Maeve Hunter’s journal of the abuse she witnessed while living in Gaddede for 2 months

October 2, 2014

https://myobservationsofhumans.wordpress.com/2014/09/26/chapter-1-abuse/

Kindness, cruelty and everything in between

Chapter 1: Abuse

This chapter chronicles my daily observation of a friend’s mother in a care home. Knowing next to nothing of the situation when I came here to visit, I decided to chart what I saw, in the interests of this blog. What I’ve written is what I notice, as an unrelated outsider from another country; my personal musings are included in italics. 

I’m in a small village far north. For the security of people involved: X refers to my friend, Y to his mother, and the care home is referred to as The Facility. X returned here, to the village where he had grown up, two years ago, when Y had a stroke, after which she was moved against her will by other family members to The Facility, a ‘top-of-the-range’ care home, where she receives no post-stroke care. Y is 92 years old.

1/01

DAY 1

When X and I arrived at The Facility, Y’s room smelled; she hadn’t been assisted up to go to the toilet. She cried and screamed for some time, clinging to X. With time, she seemed less distressed; she laughed when he spoke, but still screamed at me as X explained again and again who I was. The door was open when we arrived, all the time we were there, and when we left, so the staff could hear her (the room is soundproofed), and X showed me where they have a surveillance camera hidden pointing to her bed.

Why did nobody respond to her screams? And why hadn’t she been taken to the toilet? 

1/02

DAY 2

Y had the remains of a bib round her neck when we arrived; she had eaten breakfast in bed, alone, instead of with the others in the communal room. At first, she was very clingy to X again, and still wary of me. X and Y interact playfully. She grasped his jacket, and he pretended to struggle away, so she was using her own strength to hold on, to the point of raising herself up completely from the bed; she laughed a lot. Their communication seemed calmer than yesterday; she varied tone and expression, she responded to questions, and X understood her much of the time. When X said we needed to go so she could have lunch (visitors are not permitted to stay at mealtimes), she was upset, but took his phone and wouldn’t give it back, laughing because he couldn’t leave without it. She pulled it just out of his reach each time he tried to take it, and even ‘hid’ it under her thigh; in play like this, her movements are quick and surprisingly strong. When we left as the staff were getting her out of bed for lunch, she screamed, but when X explained that she was getting up to eat in the dining room with the other residents, she quietened down again.

We came back again later in the evening, about 8, but she was already asleep. X adjusted the lighting, we wished her goodnight and left.

How can staff claim, as they do, that Y cannot communicate and has no mental capacity? What scares Y so much about being moved by staff? Why is an active sociable woman not included in communal meals, and put to bed so early?

1/03

DAY 3

Y seemed cheerful this morning, her nameday, when we arrived. X’s dad, Z, was with her. She was communicative and smiling, sitting up at the table in her room. We asked her if she wanted to go outside, go to the store for milk; she nodded.

Watching her prepare to go outside hardly fits in this chapter of my blog; it was beautiful. X positioned the wheelchair in front of the open wardrobe. Y pointed to the coat she wanted to wear, so X took it out. He held her right hand (which she cannot move since her stroke) and pulled the sleeve over and up to her shoulder. Y leaned forward so X could bring the coat around her back. Y then put on her other sleeve by herself. X held each clasp close together while Y hooked them closed. 

She pulled herself along the path in her wheelchair holding X’s hand.

It was amazing to see the way she opened all the doors for herself: she pressed each door with her foot as she wheeled forward, then reached out with her hand to hold it open a little longer so I, walking behind X, could get through too.

She talked and sang on the way, and waved to people she knew. In the supermarket, she chose the bread, milk, etc, picked them up, and carried them on her lap. She laughed and reached out to a small child who looked at her with curiosity; he took her hand and smiled, which seemed to make her happy. When queuing up to pay, Y couldn’t reach up to the cashier’s hand to pay, so she put the money on the conveyor belt. She checked we had the groceries and receipt before leaving. On the way back, she was upset and screaming as we approached The Facility. We got there in time for the church service, so she took off her coat and joined the congregation, with X, Z and I. She seemed happy to be there, laughing and waving at the other residents, and she made sure I had a psalm-book to join in too. During the service, she was absorbed, calm, quiet except when singing the psalms. Afterwards, everyone had coffee; Y was communicative with us and with everyone who came over to greet her. Then we asked if she wanted to go out for another walk in the sunshine. She struggled to make a decision but finally assented, so she got dressed up in her coat again. Z looked at his watch and abruptly left. When we went out, her mood was much more changeable this time, singing, crying, talking; we stopped and asked if she was OK and wanted to stay outside each time she screamed out. She was very distressed on the way back to The Facility. When we got back, we sat at the table playing a music-making app on the tablet. She was frustrated when she couldn’t understand something, such as when she tried to press an icon and it didn’t work. When frustrated, she shakes her fist, pulls her hair, yells and raises her arm. She seemed very wary of me again suddenly, but X explained to her that I was there to help. When he told her that, like her, I too had worked in church music and run choirs, she softened, and touched my face. We had to leave when she had dinner at 5, which upset her a bit, but we said we’d come back later.

Y’s abilities, physical, cognitive and social, are exhibited here, yet staff at The Facility, Z and other members of the family claim she has no mental capacity. Why does Y feel worse as the day goes on, as evidenced by her behaviour?

1/03i

We returned about 8pm; Y was in bed finishing her supper. She was relatively cheerful again. X and Y had a conversation about how to teach me The Language Of The Country; she listened to me learn to count up to 20, nodded when I finished, laughed and seemed comfortable with me being there and with this activity. She spoke at length to X after the ‘lesson’ finished, which he understood to be her ideas for teaching me further (she had been a primary school teacher all her life). X spoke to her about recent election results, and they discussed it; she was clearly expressing, in body language and variation of speech, her opinions, though we couldn’t make out the words. She got very frustrated when she couldn’t ask for something to be brought to her from the table- she kept pointing and asking but screaming every time X picked up the wrong thing. She was crying and shaking her fist again. We looked through a few things; she wanted to know today’s date on the calendar, and X encouraged her to draw a circle to highlight the date, her nameday; she smiled and laughed. She browsed her recent birthday cards, reading each one and commenting to X, giving him each one as she had finished reading it. (She says ‘Oooh’ when she looks at photos and cards, and looks at them in detail.) We sang her favourite psalm from her psalm-book. Then we looked up music videos to watch and sing along to; she laughed when X showed her how to use the tablet with her finger, not her fingernail, which had frustrated her earlier today. The success of this made her more comfortable (she relaxed visibly, and seemed easier in her communication). We were still listening when the staff came in to give her medicine; they didn’t greet her or make eye contact. I heard them whispering together in the bathroom, but couldn’t understand what they were saying. They left, and about 9.40, another two staff came in to put her to bed. (Again, no greeting.) They weren’t going to brush her teeth, saying that she’d done it earlier, but they relented when X insisted (Y had had supper and yogurt with medicine since); they did not, however, let her get up to go to the toilet, though she asked to, X asked several times, and Y even took off her blanket and tried to get out of bed herself. She was distressed as they refused and began to turn her on her side for sleep, so she reached out and pulled at their clothes frantically, shouting. They sighed and seemed mildly irritated, and left when they had finished, without saying goodnight. We turned the lights down, wished her goodnight and left. She was a little distressed at first but we waited outside the door until she quietened down. She seemed very tired.

This was the first day where I think Y was comfortable with me being there.Why do the staff not greet her when they come into her room? There seems to be a lack of respect for Y as a person, not just a patient. Y engages with life and the world around her, and is understandably frustrated by her physical limitations since her stroke; X says she was always very active before now.

1/04

DAY 4

We arrived at 2.50; Y was lying down in bed, the door was closed and her room was dark. We asked if she wanted to go to play cards, one of her favourite pastimes, with her friend, B, and she assented. She pressed the button on her wristband for assistance to get up and into her wheelchair (attended to after 8 minutes). We were sent outside the room by the two members of staff. When we came back, Y was upset and crying a lot. We set out, progressing very slowly: she was very anxious and tearful. When we passed the piano in the corridor of The Facility, she stopped, opened the lid and played a few keys. X and I played a couple of chords, then songs; Y smiled and relaxed. When she wanted to continue on our trip out, she tried to close the piano lid but asked for help when it was too difficult. As we walked down the drive, Y was still a little upset, but sang and talked some of the time. She laughed at my struggling attempts to master pushing the wheelchair over bumps and steps.

B greeted her and she responded warmly, as she did when he introduced another friend, C. We sat at the table together for afternoon tea. Y chose the tea and cakes she wanted, asking to share a couple with X, and dividing them with the knife before serving X and herself. When we played a card game, Y checked with X before she committed a card to the table; she knew what to play but was not confident to play it herself, much as she struggles to make decisions sometimes.

We had to run back to The Facility for her 5 pm dinner. The staff member mushed her dinner up into a gloopy mess and shovelled it into Y’s mouth in large spoonfuls, pushing away Y’s attempts to feed herself. Y cried at her meal being spoiled. We left, and waved through the window.

Later this evening, about 7.30, we went back, with another friend, D. When we entered The Facility, we could hear her screaming. She was in her wheelchair just outside her room. As we approached, the staff member at her side moved to leave. Y lashed out at her as she passed, and she responded very strongly, restraining Y’s arms forcefully, and telling her off, far too close to her face, loudly and patronisingly. Y cried for a long time, clinging to X and D. We brought her back into her room; it took a few hours for her to calm down. D talked to her, hugged her, told her about his family and his hunting trip, responding to her attempted speech and cries. We had supper at the table in her room together, singing and talking. Y was still a little upset, crying occasionally- her sad cry mostly, not her frustrated cry. She was exhausted from crying: she gasped for breath and collapsed her head to her chest frequently. The staff came in to put her to bed at 8.45pm, and sent us all outside; they even demanded I take X’s jacket out. They closed the door, but we could still hear Y scream. We waited until 9, when one staff member asked X to come in: somehow Y’s finger under her wedding ring was bleeding, and she was very distressed that the ring had to come off for the wound to be cleaned, so she would only let X do it. She remained extremely distressed, hiding under her blanket. We sang and talked a bit, but she mostly screamed and cried. We promised to be back in the morning, and wished her goodnight; she was quieter, and waved goodbye as we left.

Why are visitors sent out of the room when the staff need to move Y? And why does all trace of our visit have to be removed, leaving Y completely isolated from the company in which she feels safe? The staff seem more forceful than necessary. What happened to Y’s hand? Why?

1/05

DAY 5

It was 4 pm when we got there and Y was in bed, in the dark, blinds down. She seemed to be low on energy today. We asked if she wanted to get up and get out in the sunshine; she assented. It took us some time to encourage her to press the help bell on her wrist for the staff to get her into her wheelchair. When she did press it (X checked that it had been pressed), it took 18 minutes before anyone came to help her. After about 10 minutes, I went out to the toilet; passing the office window on my return I could see two staff members sitting in there talking, though they were aware she had rung for help. (When I told X this, he wanted to go out and ask them whether they had heard Y ring, but Y was too distressed for him to leave her.) When Y was in her chair, we went out to sit in the sunshine before dinner; she chose a jumper, greeted her friends V and W, talked and opened the doors herself as usual (today she managed to type the door code herself, as X raised the seat of her chair up high enough that she could reach the top row of numbers). She seemed content and quiet as we sat outside; she held X’s hand. When we went back inside, Y pulled herself along using the handrail along the corridor, and looked pleased (smiling, laughing). She was anxious as she approached the dinner table (whimpering and wringing her hands), and got upset as we explained that we had to go, as we’re not allowed to be with her at mealtimes. The staff member mushed up her meal and gave her a spoon to eat it.

We went back to say goodnight later; when we arrived at 7.50, the staff were in her room, said ‘She’s in bed’ and closed the door (closing them in, us out). When they let us in, about 8.05, Y was very subdued, unlike her usual self, not communicative or responsive;it looked like she had been sedated. We sat with her, then left at 8.25.

1/06

DAY 6

Z is X’s father, Y’s husband. V, W and S are well-established friends of Y, also residents at The Facility.

We arrived at 3 pm, bringing flowers, a cake, card and presents to celebrate Y’s birthday. She was sitting up at the table in the communal area with V, W and Z; they were just finishing afternoon tea. Y opened the presents herself, smelled the flowers and read her card; she looked so happy. When X explained that the cream he had given her as a present was to massage her hands, Y picked up the jar and rubbed it over X’s hands, laughing. We moved into her room to have second afternoon tea with the cake. Y handed us each a plate, chose her tea, and cut the first slice of cake; she was laughing and smiling. While she ate, she made appreciative sounds. Eating the last small pieces on her plate, she cut it up and moved each piece using the spoon, then set down the spoon and picked up the pieces with her fingers. She ate crumbs of chocolate from the table, scraped her plate clean, and even licked the serving knife and fork clean. X asked if he could have a second piece- she nodded and talked as she pushed the plate towards him.

At one point she stared out the window and pointed for some time; we could see nothing there but she was completely absorbed.

One of the side effects of Imovane, a sedative she is given every day in high doses, is hallucination.

When Z left and we had finished tea, Y picked up the cake and brought it closer to her; she asked where the cover was, and, when I fetched it, she put it on the cake and gestured for me to take it away. We cleared the table; Y lifted her cup off the table so I could clean under it, and lifted up the lottery tickets (another present) so X could clean under them. Together X and Y scratched the lottery tickets ; she was focused (scratching out some parts, holding her thumb for good luck, shrugging when they didn’t win). X explained that the birthday presents and cake were from he and I; Y smiled and held his hand, then turned and did the same to me.

X mentioned that I play piano, and Y was happy (she said ‘oooh’, raising her eyebrows, then turned to me, smiling and making long eye contact). They asked if I would play, I said yes, so we went out to the corridor, where there is a piano, used in church services, and Y opened the lid for me. I played some psalms she knew, and she joined in singing all of them, sometimes with her eyes closed. She was smiling, singing and crying simultaneously; I wasn’t sure if it was upsetting for her, but she wanted me to keep playing, pointing to pages in the psalm book, and looking expectantly at me when I finished each tune. X joined in singing, and we continued until dinnertime- about 25 minutes. Again, we explained we had to go and come back later, and that we’d wave through the window to her as we left, but Y was still upset. A staff member was cutting up Y’s dinner as we left. It was a very small portion of a square slab of something like processed meat, with a couple of boiled potatoes on the side; it did not look appetising.

We came back at 7.50 pm. Y’s room was dark and she was in bed. I didn’t see her tonight: S asked for someone to sit with her because she was afraid of the dark and everyone else had gone, so I sat with her and W until X had left Y’s room for the night. S was looking around anxiously for the last ten minutes of our visit (we left about 8.20); I realised afterwards she needed assistance to go to the bathroom but as no staff member had passed during that time for her to ask for help, so she had to wet herself. She hadn’t asked me, perhaps because we don’t speak the same language, or because she was embarrassed.

Y is not treated like a person at The Facility. I wouldn’t treat an animal as she is treated there- the ‘food’, the questionably high dosage of sedatives all day everyday, the fact that she and other residents are not having their basic needs met (such as toilet access), never mind their individual circumstantial requirements (such as communication issues).

1/07

DAY 7

We arrived about 2.45 pm: the blinds were down and Y was in bed. Her eyes were unfocused and she seemed to struggle to stay awake. She talked to X, though she seemed wary of me again; she also seemed very upset today (crying, screaming). Y tried to get up, hurling her left arm and shoulder forward, and kicking forward with her left leg to try to roll upright into a sitting position. X reminded her she should press the button for assistance; her wristband with the button was hidden under her sleeve, halfway up her forearm, and inverted so there was no chance she could have pressed it herself without X making it accessible for her. Once she pressed it, we waited for staff to come for 20 minutes. X offered to massage her right hand (affected by her stroke) with her new hand cream while they waited. He picked up her hand and noticed it smelled bad; it had not been washed, possibly for days. X gave it to Y to smell and she agreed. So he started by cleaning her hand (Y was anxious when he went to the bathroom for just a few seconds to get paper and sanitiser). Once he finished, one staff member came in, joined after a few minutes by another. (I noticed that when the first member of staff came in, she ignored Y calling and reaching out to her, instead asking X  what Y wanted.) As we left the room, X noticed that Y had not been taken to the bathroom, and had defecated in her diaper. It took a long time for the assistants to clear this up and get Y in the wheelchair; finally, 40 minutes later, they brought her out to sit in the communal room with V and T, and we had afternoon tea.

Had she been excluded from communal afternoon tea at 2.30?

X asked Y if she wanted to share the remainder of her birthday cake with the others, and she nodded. She cut her own slice and passed me the cake to serve the others, checking that everyone had some. When X explained that we had brought her the cake as a present, she kissed his hand.

Every time anyone passed the window, she noticed and pointed them out to us, often even before we had seen them; she is really quick to observe.

We decided to take a walk around the lakeside. Y chose a hat to wear; X told her it was actually mine, though identical to one of hers. She took it off quickly, gave it back and we found hers in the drawer; she laughed when I wore mine too and we matched. When we went out, there was a child with her mother, visiting someone; she talked to us, and Y joined in, smiling at the little girl. When we left The Facility, Y noticed the breeze was cold (she said ‘ooh’ and bunched up her shoulders), so we stopped and helped her put her gloves on: she put her hand in, using her mouth to help open the glove, and then X helped her find the fingers, although she was playing by holding some fingers together, and laughing. She was communicative as usual, except when X took a phone call: then she was quiet, talking a little to herself at times, and seemed content and aware that she couldn’t talk to him when he was on the phone. (I was pushing the wheelchair, so until we reached a short stretch of flat ground where she could pull herself along by X’s hand, she couldn’t communicate with me either.) She spoke on the phone briefly, at first showing recognition when X said who it was (‘bebebe…’) and then breaking down into tears. We got back to The Facility for dinner at 5; again, she was upset that we had to leave her. When we waved through the window as we walked to the car park, she waved back, even waiting until we turned the corner in the path so she could see us and wave through the other window too.

We went back later, at 7.45, to find Y sleeping. She half-woke when we kissed her goodnight, but she seemed either extremely tired or sedated; her eyes were unfocused, her movements slow and un-co-ordinated, her speech incomprehensible.

Why is Y put to bed so often during the day? She is kept in bed until 10 am, according to other residents, and is often put to bed mid-afternoon and not let up again until the next morning. When she appears tired, is this just ‘old age’, or is the lack of stimulus, activity, social interaction something to do with it: if one is forced to spend so much time in bed, does one’s energy level go down accordingly? Or perhaps her medication, a very high daily dose of a strong sedative, for the past year, has an influence too?  

I know that Y recognises me now, and can identify me as being a supporter of her and a friend of X. The days where she behaves warily towards me are usually her less-good days in terms of her function, which indicates that when she feels less well, she is more fearful, trusting only X. Her experience of people here has influenced that response considerably, as her previous life was very sociable and community-orientated.

How can a care facility deny a person bathroom access, and risk their health through poor hygiene? Are there no standards enforced here?

1/08

DAY 8

I apologise for delay publishing this post, internet access is restricted here, as we are in a very isolated place. There was an interesting incident tonight showing Y’s musical talent.

We arrived at 4.20, and found Y in bed, very distressed, with the blind on the window beside her bed pulled down, the ear protectors used by staff on the table by her bed, and the room in darkness. When she had relaxed a bit, she tried to get up out of bed; X reminded her to press the button on her wristband. She did, but it took about ten minutes before anyone answered. We were sent from the room; two, then three, then two again, and finally just one staff member took about 15 mins to put Y in her wheelchair, during which time all residents in the home could hear her scream constantly. This visibly upset them: for example, S shuddered each time, and looked very distressed as she told X it had been worse earlier. Eventually Y was brought out and we spoke to her very briefly before we were told to leave for the residents’ dinner time.

We returned at 6.40 to see Y up in her wheelchair, in the communal room, in front of the TV. When X left the room briefly, I sat beside Y; she was quiet but noticed everything going on around her, recognising people on the TV and pointing them out to me. When there was a live song on this TV programme, she sang along, picking up the rhythm and melodic outline of the chorus.

Having spent a little time with Y now, I know that if she knew the song, she would probably sing along loudly, as usual, so was she listening to this song for the first time and copying the chorus straight off, as one who had run singing groups during her life would definitely be capable of?

Staff member 1 came over and asked Y whether she wanted tea or hot chocolate for her supper. Y assented to tea, talked to 1 cheerfully, and touched her face. 1 pushed Y’s hand away and rolled her eyes at me as she got up and left us.

Y is a person, and an observant person at that. How demeaning.

When X returned, he began to massage Y’s right hand and arm (as yesterday, he had to clean it first). With gentle massage for a long period of time, she showed a surprising amount of movement and flexibility. Meanwhile, I heard S cry out in the corridor; she couldn’t open the door to her room and was very distressed. I couldn’t open it either, so I went to look for a staff member (unsuccessfully). When I got back, S and T had worked out a way to open it. X joined us, and translated what S said, about the doors being too difficult for the residents to open; she was afraid of not being able to enter or leave her room, and when X suggested someone say this to the staff, she replied that nobody would listen to them, that someone with a stronger voice would have to say.

X and I returned to Y, wondering why everyone else had been served and had finished their supper already, and Y hadn’t got hers. It finally arrived: she was served in her wheelchair, facing the TV, so with no chance to interact with other residents. Y wouldn’t start until X and I had supper too; once I had made us some, she was happy to eat with us. After supper, we were watching a music programme on TV; Y was absorbed, singing along and enjoying it. At 8.15, two members of staff came over, told her she was going to bed now, switched off the TV and took the controls away, and quickly wheeled Y back to her room, closing X and I out. We didn’t have any time to respond.

While we waited to be allowed to wish Y goodnight, I noticed two residents try to open doors to the outside, which were locked. R, sitting on the other side of the room, pulled a funny face, so I reciprocated, which made him smile; this happened a couple of times. S was still very upset, wandering round in the corridor, gesturing towards Y’s door, whence we could hear screams, and wincing; I invited her to come sit with us so she wouldn’t be alone, which she gratefully accepted. T asked us where the staff were, he needed help, so we pointed out next time someone passed, which was seven minutes later. When we were finally permitted into the room, Y was very different; she seemed sedated and/or exhausted and unfocused. She clung to X, cried a lot, and was wary of me, covering her face with a pillow and pulling on the corner of her quilt with her teeth. We sat with her for some time. When we wished her goodnight and left, she cried a lot; we remained in the corridor outside to hear if she calmed down, but she got worse, so we went back in and sat with her a little longer, though we were told at one point to leave. We left just before ten.

1/09

DAY 9

We arrived at 7.45pm. As we walked into the building, we could smell human waste very strongly. Y’s door was lying wide open, as was the window in her room, the source of the smell: she had not been assisted to the bathroom and had defecated in bed again. Y was sitting in her wheelchair in front of the TV in the communal room. She was more cheerful than yesterday; she greeted us warmly and gestured to a seat for each of us. She assented to X beginning to massage her right hand and arm again. Today it took less time to gain great progress in flexibility: after 15 minutes, X was raising her hand to her face (which made her laugh), and extending the arm fully forward and outwards without her showing any discomfort. On the contrary, she followed what was happening on the TV show (getting involved- pointing, ‘oooh’- when the athletes competed) while laughing when X reached her hand to her nose or glasses. T was also in the room, tugging at a bandage around his leg; I saw that part of a dressing had come loose and he was trying to tuck it into the tubular dressing around his calf. He stopped and asked a staff member at one point, gesturing to his leg. She seemed to understand him, but she immediately walked away without helping him, turning her back to him and mouthing some words to her colleague in the kitchen, just out of T’s eyesight, as she left.

A resident asked clearly for help and was unnecessarily denied it. This in completely unacceptable.

I also noticed that a staff member had been watching us at intervals from the kitchen window in the opposite wing of the building, just across the drive.

We are being watched. Why? Is there something the staff want to hide?

At 8.15, a staff member approached. Without making eye contact with Y, she announced loudly that now Y was being put to bed.

Who was this aimed at? She began “Y,” but didn’t look at her and stood talking over her head; it didn’t seem to be addressed to X either.

The staff member didn’t even wait until X had helped Y unwrap her fingers and arm from his (mid-massage) before she pulled the wheelchair away and into the bedroom. X and I waited for almost 30 minutes, hearing Y scream all that time; T still sat alone trying to fix his leg dressing. (I noticed that nobody had helped him yet when we left that night.)

I asked X why it took so long to get Y into bed, and why she always appeared sedate when we said goodnight to her, even if she had been fine just before. He explained that if the process took longer it usually meant Y had been allowed to use the toilet, and her teeth were brushed. Sometimes the staff finished sooner, in which case one or both of these stages would have been skipped. He also said they gave her Imovane before starting this preparation process, so it would just be kicking in when we were allowed to see her again.

We went in to say goodnight at 8.45; Y seemed exhausted  but still fairly cheerful; she didn’t cry once in our company this visit.

Is she exhausted? If so, it’s certainly not from physical activity, except of course screaming for 30 minutes. Is she drugged? With what and in what dosage?

While X documented Y’s medication, I sat beside her bed and chatted; she murmured along, and tonight she didn’t hide her face. When X came back, we said the evening prayer together with Y, and she gave us both hugs and kisses goodnight. She got a little upset until X said we’d be back tomorrow; she calmed down and waved to us as we left.

It was eerily quiet in The Facility tonight: nobody but T had appeared, and normally we see a few faces. I noticed that one apartment door (belonging to S) was locked, and the night staff locked the front door of the building behind us.

1/10

DAY 10

We arrived at 2, for church service. Y was really happy to see us there (Z was with her). During coffee afterwards, Y’s chair was placed in front of a low coffee table, so she couldn’t reach her tea or cake; X and I were placed at the table behind Y’s wheelchair, out of her sight. I held her plate up at a comfortable height for her, kneeling on the floor. Z told me I needed to cut her cake up with the spoon for her because she couldn’t; I nodded and handed Y the spoon, whereupon she did it herself without problem. We laughed a lot because I was trying to rescue the vanilla sauce from falling onto her lap- as she pushed pieces of cake onto her spoon, sauce was slopping everywhere. She finished and gave her plate to Z to put on the table. I handed her her tea, and we clinked cups. Today, Y seemed happy and comfortable to interact with me though X was not in her line of vision; she recognised me. She warmly greeted several of her friends, holding or kissing their hands. She waved and laughed at the priest, but he smiled awkwardly and sat far from her, not greeting her; that didn’t stop her pointing and saying ‘oooh’, laughing, as he counted up the money from the collection. At some point, Z decided they were leaving so he wheeled her over to the lift, we followed, and we all went to Y’s room, where we looked at old photos from a summer vacation Z and Y had. Y was affectionate, putting her arm around Z’s shoulders and tugging his ear or hair or shirt; he laughed along with her a few times, but then got less patient, shaking her hand off. We began looking at photos of X and I helping on a farm yesterday; Y enjoyed X pointing out and naming the neighbours involved. She suddenly became very tired, so Z pressed the assistance button on her wristband and then left; it was just after 4. He reappeared briefly to say the staff refused to put Y to bed for a rest, because it was too close to 5 pm dinnertime.

This didn’t make sense, given that most times we’ve arrived, at any hour, she’s been in bed.

Anyway, X adjusted her chair so she could lie more comfortably for a nap; she helped by moving her head and legs. After napping for a while, just before 5, she woke up and stretched her left foot forward to rest her toes on the edge of the table repeatedly. Just after 5, when we were readjusting her chair, a staff member came in to tell her it was dinnertime. Y pulled herself along holding X’s hand, and again was upset when we explained we had to leave; from the corridor, we heard her cry for some time after.

We went back in this evening about 7.10. Y was sitting up having supper in the communal room, though she was placed alone at a separate table to the other residents (all silent, and presided over by one staff member, who didn’t speak or make eye contact with anyone, but took away plates and cups as soon as they were empty). Y’s wheelchair facing away from them, out the window into the dark. When she saw us, she was happy, and greeted us both warmly. She saw I had brought her some milk; she took the carton, gave it to X, and gestured that we should have supper with her, showing him what chair to sit in. I made us both some supper, checking first for Y’s permission to go into her apartment. X left briefly to help sort out some confusion among the other residents over walker-ownership (!) at the other end of the room, behind Y’s chair. After he had been away for 5 minutes, Y checked and saw that there was still hot chocolate in his cup, and she began to fret a little. He reappeared, and she was at ease again. Y talked at length to X about several things, sometimes gesturing to whatever was on the TV or pointing at something outside; she seemed to be firmly expressing opinions, using her left arm extensively to emphasise her words (waving, hitting the table with her fist or palm, holding her head). She got upset when V came over to wish her goodnight. She was distrustful, yelling at her, pushing her arm away, and even slapping her hand when V reached out to touch X’s face as he wished her goodnight. X tried to appease Y and to wish V goodnight properly, but Y’s mood had definitely changed; she showed angst and anger, at the TV, at X, at V. We moved over to the sofa beside the TV and changed channel until we found a programme she didn’t ask to be changed. X massaged Y’s right arm and hand as we watched.

During this time, I could hear two other residents, a man and a woman, screaming and crying behind closed doors.

About 8.30, a staff member came over and told Y that they were putting her to bed now; Y hit her, and the girl restrained her arm as she repeated what she had said. X asked Y if she wanted to go to bed and she screamed and cried; that indicated ‘no’. As last night, two staff members then began to pull her away before X had separated his hand from Y’s. She screamed and cried all the way to her room, and for the following 20 minutes, behind the closed door. When we were allowed in to say goodnight, Y hugged both of us warmly, and waved as we left.

Why do the staff just walk out of the room and away when they are finished? X has to ask every night if they’re finished, and if we can go in now, and they nonchalantly shrug yes. Why don’t they come over and say, since they can see us waiting there?

(One set of ear protectors, which had been sitting on the low table by the door earlier today, had been moved up onto the high shelves, and concealed by one of Y’s hats.)

Had it been used, and why was it hidden?

1/11

DAY 11

(S and P are other residents at The Facility.)

We arrived at 7.45 pm. Again, the communal room was almost empty (S and P were there were there), and silent except for the TV. Y was in bed dozing; staff member 2 told us she had been tired. Y half-woke and spoke with X, but she was clearly not in a good mood.

We saw in her bathroom, on her wallchart, that her prescription for Imovane was unusually high (5mg, instead of the maximum 3.75mg dosage recommended for people of her age, 92), and prescribed for everyday use for the past two years, which contravenes its recommended short term use. The plastic packet, empty of tablets and in the bin, showed that in fact Y had been given 7.5mg of Imovane: that is twice what is recommended for people her age. Imovane is also specifically not to be given to stroke patients, as it can stop someone suffering from post-stroke sleep apnea from breathing.

More information on this drug can be found here: http://en.wikipedia.org/wiki/Zopiclone.

When we went to say goodnight, Y was still half-asleep; she said goodnight to X but slapped me away.

On the way out, I asked X, what if Y is just really tired? She is 92, and has had a stroke. X said that she had always got up at 5 am to go to the bathroom, was out of bed and fully awake by 7am, and she went to bed about 10 or 11 pm, even in the few days immediately after her stroke. The Facility had always put her to bed for long periods of time from when she arrived there- for 24 hours at a time, on occasion. As they had continued to do this (I have witnessed that myself: whether or not Y wants to go to bed, she is put there) for two years, Y naturally has become used to this, as would anyone of any age in any state of health. Her treatment at this facility has made her so inactive and stationary.

1/12

DAY 12

We arrived at 2.45. Y was sitting up in her wheelchair at the table in her room, with Z, who was showing her some old photo albums. He moved her hand away when she went to turn the pages, and maintained a continuous commentary about the photos, despite Y’s attempted interaction. She was quite frustrated at being ignored, lashing out, hitting all of us at different times, pulling Z’s hair, screaming and shaking her arm when she looked at me. She seemed very out of sorts. We suggested a walk in the sunshine; she nodded and, as before, got dressed to go out. She chose her boots to wear- X struggled to put them on over her thick socks, which made her laugh, pulling his hair. She chose a matching coat, and though the process was slower than other days (she was crying and shouting a lot), she managed to get her coat on; X zipped it up for her to prevent her getting more frustrated. Z stood over her, watching. Hat and gloves on, she opened the door (again, more hesitantly than normally), and we left, X holding her hand as she pulled herself along. Z tried to help by pushing the chair and opening doors, though Y normally does these herself. We went down the hill of the drive, at which point Z left to go home- Y was very distressed, reaching for his hand and asking him why he was going, but he quickly said goodbye and left. She cried.

We asked where she wanted to take her walk today: she gestured the church on top of the hill, so we went there, I pushing the chair, X holding Y’s hand and talking with her. She seemed fearful of everything round her. We met a neighbour, out with her dog, an interaction Y really enjoyed, and we went into the pizzeria to say hello to the proprietor (Y whimpered as we approached, but laughed at my failed attempts to push the wheelchair over 3 steps, so X took over, and she seemed OK, looking around at customers and at the TV while we were there). We continued on our walk, stopping to read the notices at the church, some headstones and flowers in the cemetery, and sitting for a few minutes in the sunshine. Y cried a lot today. On our way down again, we passed the house of a friend of X and Y, and we asked Y if she wanted to say hello; Y shook her head and cried, so we went on. Again, as we approached The Facility, usually at the top of the hill of the drive, where you can see the full building, she screamed and cried. We offered to stay outside and walk a little more, as we still had time before dinner (it was 4.20), but she couldn’t decide, so given it was cold, we went indoors.

After she had taken off her hat, coat and gloves (she laughed as X hid one of the sets of ear protectors inside her hat and put it back on the shelf), we sat at the table in her room. She screamed when X went to document her wallchart, and even when we were both beside her, she cried a lot, shouted, and lashed out. We tried looking at some photos on the tablet; she had mastered how to swipe to the next image, but swiped angrily from one to the next without looking at them, seeming to need the physical gesture, which she accompanied with an angry sound. She quickly got frustrated with that too, and was inconsolable until dinnertime. We went out to the communal room (Y pulling herself along as usual) to the dining table, whereupon she again was upset that we had to leave.

I noticed as I left her room that her bib and still-full glass of juice from lunch were on the worktop by the sink in her room: she had eaten lunch alone in her room instead of out with the others.

On our drive back, X and I discussed her lack of co-ordination and subsequent frustration, as documented side effects of Imovane; X recounted how she had drastically worsened during her time at The Facility, giving examples of how able she had been even immediately after her stroke. He said he had seen it worsen much more since December 2013, when the doctor had begun to describe Imovane for daily longterm, not occasional, use.

When we went back about 8 pm, Y’s room was locked. We found a member of staff and asked her to open it; she offered no explanation why it was locked, but just swiped her pass to unlock it and walked off nonchalantly.

I was surprised at this behaviour- no explanation, greeting, apology, anything?

We went in to find Y in bed, predictably, lying on her back, her eyes half open, and she was very distressed. She cried, clung to X, and screamed at me. X calmed her down a bit, until when he asked if he could go to check her wallchart and I would sit beside her instead: she shouted out, then nodded. I sat on the floor- she pulled her hand away so I didn’t touch her, but I talked to her quietly, and responded to her sounds. She had one moment of panic, where she screamed a couple of times (I talked to her, saying ‘I’m here, it’s me, X’s friend’ over and over) before settling again. Otherwise she gradually dozed off. Her breathing was very strained; she was gasping and gulping for air, her airway seemed to be blocked with mucous, which she kept trying to clear (this is extremely difficult if you’re lying on your back). X returned, wished her goodnight, and we left.

I am worried about Y struggling to breathe when lying down. As well as this being uncomfortable in itself, she suffers from sleep apnea, so does this lying position put extra strain on her body to breathe?

1/13

I’m going to fast-forward this blog a bit by posting two days’ notes per day. This is because activity has escalated exponentially here, and I want to keep you up-to-date. Here are my notes from the next day I visited.

DAY 13

When we arrived at 7.30, Y was sitting up at the table in the communal room with V and R, watching TV. She was happy to see us, greeting us both warmly, before helping X remove his jacket (she pulls the zip, holds one cuff while he turns out of the jacket, then pulls off the other cuff, folds the jacket in half on her lap and hands it back to him).

While we were talking, I noticed R’s hearing aid was beeping again, and pointed it out to X, who informed a staff member, 7. 7 walked behind R, while he was dozing, tried to adjust it in his ear, then took it out to look at it more closely. R was very distressed and angry, but when he protested, 7 shushed him. He took the battery out and began to walk away. R was very upset. 7 laughed and held out his hand to shake; R shook his fist at him and again protested (saying it’s mine and holding out his hands, palm upwards). Looking at it again with a colleague, 7 decided it needed to be cleaned but that was someone else’s job, so in the meantime, to stop the beeping sound, he took the battery out. A few minutes later, 7 came back to try to replace the battery. R covered his ear. 7 pushed his hand away, forcibly removed the hearing aid and replaced the battery, then replaced the hearing aid, which was now quiet; R was extremely upset and shouting. When 7 left, R turned to me and began talking about what had happened; he also turned his hands over and showed me old wounds, pointing in the direction of the kitchen and office as he did.

Y found the whole episode entertaining. She and X were talking and she indicated that she needed the toilet, so he helped her back to the bathroom in her room (she held his hand and pulled herself along), and reminded her to press the button on her wristband. She did, we waited a few minutes, she pressed it again, we waited a few minutes; all the while she seemed OK, talking to X. She indicated to him then that it was becoming urgent, so I went out to look for someone. I looked in all the communal areas, in the open doors of rooms, in the office, and finally saw 8 in the kitchen. I excused myself for approaching her, but said that Y needed help to go to the bathroom. She nodded impatiently, and said, in English, ‘yes, yes’; she gestured to the 3 pieces of bread in front of her which she was making into sandwiches for supper, and said ‘wait a moment please’.

So she understood, and knew Y needed help, but making sandwiches was more pressing and important?

I went back to Y’s room and told X. A few minutes later, 8 came in, told us Y was going to bed now too (told us, not Y), and sent us out of the room; it was 7.50. T, in the room next to Y, was screaming as we came out. 7, the other staff member, joined 8 about 3 minutes later. I asked X why 8 had taken the wheelchair away from instead of into the bathroom. X explained that Y couldn’t be moved from her wheelchair to the commode, but they used the lift to transfer her from wheelchair to bed and from bed to commode.

This makes no sense to me. X later explained that her mobility had become extremely limited from long periods of enforced inactivity, which meant she couldn’t manage the manoeuvre from wheelchair to commode. This forces me to ask again why she is receiving no physical therapy as post-stroke rehabilitation.

We also knew Y had missed supper, the food as well as the social interaction; 8 said she had been given it earlier.

When? With dinner? And she alone had been served, when she was in a room with others? I couldn’t believe this.

We sat in the communal room hearing Y scream until 8.15. R still looked very distressed and anxious, and S was very upset, looking at Y’s door and shuddering every time she heard a scream. T appeared briefly, looking very ill and distraught, and returned to his room shortly after. When we finally saw the staff leave Y’s room, 8 was carrying a trash bag containing a diaper. We went it, saw the toilet had not been used, and noticed the smell of faeces was around Y’s bed; she had been put to bed, forced to defecate in her diaper, then they had taken it away, and left her in bed. She cried for a long time thereafter, clinging to X. About 9.30, she was finally calm enough for him to document her wallchart of medication, while I sat with her; I expressed sympathy and sadness when she cried, which seemed to help her calm down each time, though she wanted me to keep my distance and not hold her hand. X came back, and Y clung to him again. As they said evening prayer, she began to cry again; on second attempt, they finished the prayer, and she wrapped X’s hand and arm around her head. She was forcing herself to stay awake; X explained she was fearful of going to sleep because we would leave then, and she was very afraid of the staff now. She took a long time to calm down. From about 10 onwards, I heard R walking up and down the corridor, crying, talking to himself, and calling ‘hallo, hallo’. About 10.25, we wished Y goodnight, waved and blew kisses, and she waved back as we left. R was just going into his room, very upset and distressed, as we left the building. (I noticed S’s and M’s doors were locked.)

1/14

DAY 14

Today we heard Y screaming from when we got out of the car in the car park. We hurried inside. When we opened the door to her room, there were two staff members there (both wearing ear protectors), Y was in bed, I saw her legs were exposed before we were told to leave, and the door was closed behind us. After about 10 minutes (it was now 3.50), the two staff members left, carrying two trash bags, each containing used diapers. We went in; the smell of human faeces was overpowering, and emanating from Y’s bed. She was lying flat on her back, and looked drugged (very white, couldn’t focus or co-ordinate, her eyes looked panicked). She vaguely welcomed X, gradually realising who he was, clinging to him and crying. (I also noticed she has a bad toenail infection on her left foot; it must have been there untreated for some time because the nail had begun to blacken at the root.) We checked the bathroom; there was no smell there. Y had not been taken there when she needed to.

Why does this seem to be standard procedure here for Y? Doesn’t this seem a direct contravention of the human right to live in dignity?

We returned to Y, X comforting her, and we asked if she wanted to go outside to get some fresh air. She agreed that the room smelled, and assented to a walk, moving her leg as though to get up. She was confused when X told her she needed to press her wristband button to be assisted up. She half-attempted to but kept getting distracted and ended up playing with the wristband, taking it on and off both wrists, waving it in the air, biting it; we laughed. Finally she pressed the button, X holding it still for her. It was about 5 minutes before a staff member came (Y screamed at her), shortly followed by another (Y laughed and waved) to help her.

It is clear that Y has preferences among the staff; she is consistent in expressing fear, dislike or affection for different staff members.

We were sent out while they moved Y to her wheelchair. When she came out of her room, we were sitting with S, T and two visitors; they were all former neighbours. When Y joined us, they greeted her, and told me what a wonderful musician Y had been. T left, returned with a mouth organ, and began playing tunes, which Y and one of the visitors sang along to.

I was touched by how thoughtful T had been, trying to cheer Y up.

X and I danced, which entertained Y, so X took her hands and danced with her too; she was very clear on rhythm and direction, and seemed to enjoy herself. After a few songs, she got a bit tearful, so X handed her her coat, she got dressed, and we left for a walk. Y was very slow to understand the doors; X opened the first one, and talked her through how to open the next two. When we got outside, Y looked blank; X showed her the time (4.45), explained that it would be a short walk, and suggested we check out the community noticeboard just down the road. Y was very quiet until we got there. We positioned her chair so she could read the notices (i.e. see them all, point to some for X to read to her, and respond to them; she was happy that church service would be in The Facility this Sunday, for example). During one of her playful interactions with X, she investigated the contents of his jacket pocket, after which she zipped it up carefully.

Y was upset as we approached The Facility, though we tried to reassure her. She went inside, she gestured her dislike at the smell in her own room, removed her coat, and went to dinner. She was distressed when we explained we had to leave during the mealtime; she was still crying and reaching out to us as we walked past the window on the way to the car.

1/15

DAY 15

7.30 pm. The light was on in Y’s room, we saw from the car, but when we went in her door was locked, and we could hear people in there. A couple of minutes later, two staff members came out, carrying a trash bag; we asked if we could go in now and they said yes. Y was in bed, crying. She clung to X and cried for a long time. He talked to her quietly, and she eventually calmed down. When X went to the bathroom to document her medication, I sat in the armchair a little distance from the bed, so Y could see me in the lamplight, and knew I was there, but I wasn’t looking directly at her. She seemed comfortable, and we communicated easily (when she cried, I expressed sympathy, which calmed her; when she was chatty, I responded and asked questions; when she laughed, I joined her; when she screamed, I waited for her to finish and expressed empathy). She was a little distressed when I moved my hands and she couldn’t see them anymore, so I replaced them, and she was OK again. When X returned, she and he played and talked as usual, occasionally punctuated by Y sobbing for a few minutes. She was upset again when we tried to say evening prayer; she knew we would leave sometime after. She clung to X and didn’t want us to leave, but eventually got very tired and accepted that we would be back tomorrow. She waved to us as we left. The door was still locked as we left, so we made sure to leave it more ajar than normal.

What is the point of locking the door? Y is paralysed. She can’t go anywhere. What benefit is it to staff or resident?

1/16

DAY 16

We arrived just before 6. Y was in bed; other residents in the communal room said they hadn’t seen her at dinner. When we greeted her, her eyes were unfocused and she struggled to co-ordinate: she was sedated. It took a long time to calm her down, as she was very distressed, crying, screaming, clinging tightly to X. I noticed her glass of juice was on the bedside table, untouched since dinnertime. She also kept licking her lips and trying to swallow: she appeared thirsty.

Once she had settled a bit, X asked if we could massage her legs, and she assented. I was really happy that she let both of us sit on her bed, each of us massaging a leg; she relaxed at the physical contact, although she still appeared sedated. After some time, X gently flexed her legs individually; her flexibility was impressive and showed potential for more.

It was very interesting to see that when X tickled her right foot (the side affected by her stroke), Y responded by pulling her leg up towards her body and smiling; she definitely has some nerve connections functioning there. As we worked on her legs, we noticed her feet smelled unwashed and felt sticky. We removed her socks to find all her toenails badly infected with a fungal infection (easily treated, but had clearly been there for some time), and her skin looking puckered and unhealthy.

About 7.15, a staff member came in (without knocking or greeting any of us) with a tray bearing Y’s supper; she hadn’t even asked if Y wanted to get up to eat with the others. We asked her if Y could get up; she took some time to agree, whence she snapped her fingers at us, walked off to shout from the doorway for her colleague, return to the bedside rolling her eyes and shaking her head at  me, and told us to leave. We weren’t really sure what was going on, as we sat in the dining room with the others (who had finished their supper now: they had been served first), hearing Y scream. X realised that the staff weren’t sure who I was or why I was there so they were playing along at being obliging: had he asked for Y to be in company at this time of evening, he would have been refused. We wet back into the room when the two staff members left, to find Y at her own table with her supper, sitting in the dark facing out the window. We asked if she’d like to eat with the others outside instead and she immediately happily assented. Once we had sat down, and I had made X and I supper so we could eat together, Y seemed to come alive: she smiled, talked, laughed, interacted playfully with X, shared her food with him, clinked our teacups with hers, even chatted happily to V. Once she had finished, she removed her bib and agreed to X’s suggestion that we sit at the TV with T, while X massaged Y’s right hand (again, the improvement in mobility and flexibility in just a short time of massage was remarkable). Y smiled all evening. The night staff approached her at 9.40 and told her she was going to bed (although she was absorbed in the TV show, which would run for another 20 minutes); Y cried out, hit the staff member and pushed her away, all of which was ignored. X asked her if she wanted to finish watching the TV programme or go to bed. The staff interrupted to say they didn’t have enough staff to put her to bed later so she had to go now. X explained this to Y, she accepted, and was fine as they led her to her room.

Why don’t the staff just talk to her as a reasonable adult human? And why would they not have enough staff? The staff rota is publicly displayed, those two were the only two people doing the night shift, so they would be here all night, why not put Y to bed later if she wants? And why does the facility manager insist there are enough staff to sufficiently care for residents when the staff themselves know different?

When we were finally allowed in (it took until 9.30), Y was out of it; she looked completely out of her mind, unfocused and incomprehensible. She was lying flat on her back, groaning every time she moved her legs. She was coughing (a rattly chesty cough that sounded bad), wheezing, and gasping for air.

I am not a healthcare professional, but with a bad chesty cough, I know she should not be lying flat on her back!

We sat with her, X documented her medication, then we wished her goodnight. Y waved at us both as we left.

I was happy she responded to my blowing a kiss and waving goodnight to her as well as X’s, for the first time.

She had been given 7.5mg of Imovane again tonight. The front door was locked when we left.

1/17

DAY 17

We arrived at 2 pm, in time for the church service. Y was very happy to see us. We were last to arrive so we were sitting behind her (Z was beside her); she reached back to hold X’s hand several times. As usual, she sang and was absorbed in the service. Afterwards, we had coffee. Y was insistent that X sit next to her, and she complained when X hadn’t yet been given a plate or cup. She filled his plate, and kept sharing her food with him. I was sitting with S, who did the same for me, and R. A friend joined us, which made Y very happy. During coffee, Z began to tell X, Y and everyone else at the table that he and X’s sister had found a researcher who claimed Imovane was good for Y, and he praised how alert she was.

Everyone else had commented that she looked tired today. She dozed off at the table mid-conversation.

X asked why she needed to be drugged if she was so alert, and also pointed out that Y was in fact asleep, whereupon Z laughed and explained slowly that Y was 92 years old.

Z seems confused in his logic. One minute Y is so alert, the medication is good for her, the next minute, she’s asleep because she’s 92. Z is the person who has been appointed as Y’s spokesperson for her care and for legal purposes. Is this wise, when he is not clear in his reasoning?

Z pushed her to her room and asked staff to put her to bed. It was 3.50.

Observations of other residents

S: clearly enjoyed the company today but looked haggard and anxious as time passed, and when she stood up, it was apparent that she had defecated on her seat, her clothes were stained, and she walked up and down the corridor for 20 minutes asking for help before one of the staff made themselves available to help her. I saw later that her trousers had still not been changed, or her chair cleaned.

R: seemed to appreciate company during coffee- he is always alone. He talked to me briefly but realised I didn’t speak The Language Of The Country, so we just sat together quietly. When he wanted to leave, I moved my chair and placed his walker in front of him to allow him to pass; he smiled and thanked me in German.

T: he was not at the service, but arrived near the end to join in singing a couple of psalms. Nobody gave him a seat, so eventually he crossly went to his room and returned after a few minutes with a stool. He talked to a couple of people, but was soon left again on his own. I talked to him in English, he to me in The Language Of The Country, for a while, and we both seemed to understand. Later, I invited him to play some music on the harmonica again; he was happy to do so, and X and I danced. I hugged him and said thank you afterwards, and he looked very pleased.

When we went in at 4.10 to say goodbye (once the staff had left the room; Z had already left), Y looked very white, and her eyes revealed that she had been given strong sedatives again. She was vague and upset, but waved goodbye as we left.

We returned at 7.30 to find Y being put to bed; staff left her room, carrying used diapers, and we went in to see her. She was extremely distressed, confused and crying; her face was very pale and her eyes unfocused and struggling to stay open. Everyone else was in the communal room having supper; Y was excluded. We asked several times, unanswered, whether Y had had supper. About 20 minutes later, a member of staff appeared (without knocking as she came in) with a tray of supper for Y. When X and I had made our supper so we could join her, we sat together. Y was very out-of-sorts, crying and screaming a lot, fidgeting, kicking off the quilt, putting a serviette, the quilt or her nightdress in her mouth, and not really eating or drinking much. Her stomach was extremely bloated, and she seemed to be trying to rearrange herself to ease her obvious discomfort. We tried to calm her with talk, photos and music, but she was extremely distressed, and continued to be so until about 10pm. In the meantime, she had been given her medication (including 7.5mg of Zopiclone again), fed to her with yogurt. Her teeth were not cleaned, and if she had been assisted to the toilet at all, she hadn’t been between our arriving at 7.30 and leaving, Y asleep, at 10.30.

I have been concerned each visit that Y does not get enough fluids to drink. There is never a jug or glass of water in her room, and she often leaves juice untouched at mealtimes. Elderly people often need encouragement to drink more, so I have been trying to do so, but it is the staff’s responsibility to ensure her nutrition is adequate. It is unlikely Y had been assisted to the bathroom this evening (the staff carried used diapers when they left the room as we arrived). It is the staff’s responsibility to ensure these needs are met too. Thirdly, leaving her teeth unbrushed (a common occurrence, I have seen) is not only unpleasant for Y, but over the two years she has been in The Facility, I can see from photos that she has gradually lost many teeth. I am not a dentist so cannot link the two facts, but other dentists who have seen the evidence suggest that this lack of hygiene is as least partly to blame, and potentially could cause infections which would be very painful and difficult to cure. 

Is this appropriate care? Would you accept this treatment for any of your relatives, or for any other human?

I was worried to notice that Y stopped breathing, several times, for more than 20 seconds, and that her cough, rattly and chesty, sounded worse today than yesterday. She was out of it when we left, not registering either of us kissing her goodnight. As we waited outside her room, she began to cry and scream again; we began to go back in but saw one of the staff was with her already, so we left. Again, the front door was locked.

I regret that we didn’t stay, but the member of staff was insistent that she would attend to Y, blocking the entrance to the room. Y was distressed already so we didn’t want to disrupt further.

1/18

DAY 18

We arrived at 2.40 pm to see Y up at the table in the communal room, with Z and other residents, finishing her afternoon tea. She was very happy to see us both, and gestured to a chair for each of us. We sat and talked together. Y enjoyed the occasional sun shine on her face through the window, once I had pulled across a curtain to protect her eyes; she smiled and tilted her face towards the sunlight. She played and interacted with X as usual, held Z’s hand, and struggled to keep her eyes open at times. She has had a large stye on her left eye for several days, and it clearly irritates her- she keeps trying to rub it, and then her eye is red and sore-looking.

Styes are skin infections, caused by poor hygiene; had the staff not noticed or chosen not to treat it when it started?

As usual, Z behaved towards Y as though she has no mental or physical capacity, calling her ‘little Mama’, and X encouraged Y to do the things she wants to (e.g. feed herself, turn pages, pick up her cup). M, S and V sat silently at the table, looking worried.

Z has, in the past, threatened them when they have stood up for Y.

X and I suggested some fresh air; Y struggled to decide, but finally agreed. We went to her room, and she got dressed in her coat, hat and gloves as usual. Y was upset and confused as we walked to the family-run store around the corner, though the family are her good friends; she was particularly upset when X was distracted by a phone call, Z left without saying goodbye, and she was left alone with me in the store for a few moments. She quickly calmed down as she recognised the familiar surroundings.

We were invited for afternoon tea; Y chose her tea and her favourite cake. We sat at a table, I made tea, and a friend joined us; Y was happy to see him and made sure he also had tea and cake. While X talked with another customer, I ask our friend to ask Y (in The Language Of The Country) whether she wanted cold water for her tea, so it wouldn’t be too hot. She answered him, and then turned to me and gestured for me to stay at the table. Our friend had brought a pack of cards so we began to play. Y was absorbed in the game, enjoying playing as well as watching others play. She was obviously very familiar with this activity from her life before stroke, carefully arranging her cards by suit, calculating her next move, picking up cards from the table while carefully concealing them from other players. Y caught me picking up cake crumbs from the communal plate and eating them, and she laughed. Her chesty cough sounded bad today still, and she had occasional coughing fits where she was distressed and very red in the face. She was very pleased that our friend was observant every time she needed something, another serviette, or some help. After our game, we paid for our tea, bought a lottery scratch-card (Y interacted with the cashier and other customers as she paid), and went back to The Facility. As usual, she screamed and cried on our way back. We arrived with a few minutes to spare before dinner. She was confused and un-co-ordinated, missing the button to open the door by a decimetre. When Y approached the dining table, she was served a plate of pancakes with jam for her main evening meal, and a spoon was thrust in her hand. Her expression as she flung down the spoon showed disgust for the ‘meal’ and the way she was treated.

Why is she given this for her meal? There is no nutritional value or appeal for a perhaps frail appetite.

R greeted me in English today, and looked very pleased with himself. T looks more unwell each day, and seems to be isolated.

Is isolation his choice, or a staff decision?

S was also looking haggard and unwell today. We went back to Y’s room to pick up our jackets; we noticed that Y had been given 2 x 500mg of Alvedon that morning, as well as at night. We also saw that since yesterday, two of her physical therapy sessions had been ticked off her wall chart checklist as done, on dates several days before, i.e. back-dated.

I was appalled by this dishonesty.

We returned at 7.45 this evening, to find Y in bed, very drugged, in a dark room. Her eyes were half-open but she was not mentally present at all. For the first time, she didn’t register X’s greeting hug, or mine, at all. She sobbed a little in her stupor once, but was mostly silent, very pale and still, though not asleep. We left about 8.20, and waved goodbye; her eyes followed us but she made no movement.

In the communal room, T asked X how Y was, and X explained. T said he had refused to take Imovane at The Facility, though he had taken it before.

This was interesting. T knows what Imovane is, but sees it as a short-term sleeping aid, not a long-term fixed standard, as it is here. Does he know this misuse is dangerous?

Today I felt we saw 2 different Ys: Y in The Facility when she is drugged and treated like a vegetable, and Y when she isn’t in The Facility, present, playful and active

1/19

DAY 19

Forgive my dwelling on Y’s musical explorations today. I found them fascinating.

7.45pm. Y was up at the dining-room table with R, having just finished supper. She greeted X, our friend and I warmly. She talked, laughed, played at arm-wrestling with X. R reached out his hand to our friend and I to introduce himself; he seemed to enjoy following our conversation with Y. I noticed Y was very welcoming to our friend though she had never met her, but she did not like when our friend patted her forearm when she was upset- she shook our friend’s hand away. I also noticed that the chair S had sat in on Sunday, when she had not made it to the bathroom on time, still had not been cleaned.

This premises is always dirty- the tables, floor, chair, towels.

We went out to the foyer to play with the organ there. Y reached out and pulled out the stops.  X operated the bellows foot-pedal, and I the volume, while Y played, at first bashing at random, then slowly figuring out chords, favouring at first Cdim, then repeating C and F/C a few times. X and I recognised this and began singing along with her, ‘Oh when the saints go marching in’. When the next chord, G, approached in the song, Y tried to find it, and managed to find it (with her spatial, kinaesthetic and aural skills) in relation to the previous triad, playing G/B. She laughed a lot during this, and seemed really pleased with herself and our collaborative performance. I was moved.

When she wanted to return to her room, she indicated so, pushed the stops back, and gestured for me to close the lid. We returned (Y opening the doors as usual), greeting other residents as we passed them. We approached the table in her room (the room was still fully illuminated), where we sat to play cards. Y occasionally stared out the window into the darkness and pointed (was she hallucinating again?), but generally was very alert and active.

These hallucinations are a recognised side-effect of Imovane.

She and I played cards, as yesterday. When she used a tissue, she tucked it into her waistband after, to use again next time. After cards (we reached a stalemate so declared a draw and shook hands), we talked for a while, X and our friend telling Y things and Y responding, sometimes contributing a long speech herself, which seemed to fit in with the conversation. She was aware of what they were saying and was responding normally. When she started to show signs of tiredness (struggling to keep eyes open, crying slightly), it was 9.20. She pressed her button for assistance. After exactly 25 minutes, a member of staff came in, and we were sent out of the room as Y was put to bed. We listened to her scream for 25 minutes, after which one staff member emerged briefly, then returned (I think with yogurt for Y’s medication, but don’t they usually do this at the beginning of the preparation-for-bed procedure?). During this time, I went out to the toilet, and noticed a trash bag full of used diapers lying on the floor in the middle of the foyer: it hadn’t been there earlier. At 10.15, 30 minutes after we had been sent out, we were permitted back in. Y was quiet but tired. We each wished her goodnight, and she was quiet until we had left the room; we heard her cry for a while when we stood outside in the corridor. We left at 10.25.

Our friend is staying with us for a few days, and has worked with many stroke victims before. 

The substandard level of cleanliness at The Facility worries me. The residents are frail in resilience, and almost all of them use a walker or wheelchair; potential points of infection and tripping hazards are more dangerous to the vulnerable.

Today Y was intellectually engaged in activities, and enjoyed it immensely. I would love to see more activities to stimulate the residents here, to make them feel proud and not worthless.

1/20

DAY 20

I am really struggling to understand what I see here. I know this blog is challenging to our generally-held view that medical care systems exist to help those in need of care. I have lost friends and made enemies. As the church, once seen as the untouchable moral rock, has revealed itself to be corrupted by members driven by their own interests to the extent of extreme cruelty to others, perhaps a 21st-century healthcare system may now be showing through the cracks that it too may not be the epitome of intelligent empathy we want it to be. Humans are human, they are capable of great cruelty and great kindness.

I can only conclude to myself that I must not get distracted or weighted down with the multitude of tiny details that just don’t make sense. Looking at the basic fact that someone who suffered a stroke has been, and is being, denied care for that dreadful affliction makes all the other lesser injustices reinforce that here is a social structure which allows, encourages and conceals such abuse. History shows countless examples I need not state explicitly. My efforts are better spent publicising that fact.Your efforts, reader, in sharing this blog and thinking, challenging and discussing the ideas herein, can lead to great and crucial social change.

We arrived around 3.30. The local hairdresser and a staff member were in the public bathroom, the door open, in the foyer; a resident was talking as she had her hair cut. The member of staff kept shushing her.

Y was sitting up at the table in her room with Z, her sister and sister’s partner. She must have had afternoon tea in her room with them- I saw her plate and untouched teacup on the worktop. They were looking at photos. Y was happy to see us all, though to me her room felt a bit crowded with 6 visitors. Y’s sister and Z talked over Y’s head, occasionally spoke to her patronisingly, and didn’t let her do anything, like turn pages, herself. Y reached for X’s hand; Z took her hand and held it tightly. She shook him off and reached again for X.

Y’s sister told Y off when she shouted out, instead of listening to her, or realising that she was provoking her. After about 15 minutes, Z and Y’z sister left (the sister’s partner had lost interest much earlier, and had gone outside).

Here follows a list of indicators in Y’s behaviour that she was suffering from side effects of Imovane.

Y seemed OK with X, but wary of me (Imovane indicator #1); X reminded her who I was and she reached to give me a hug. We asked if she wanted to go out and get some fresh air, as it was a lovely sunny day. She struggled to make a decision (indicator #2) but finally assented. She wouldn’t choose a jacket today, staring blankly at them in the open wardrobe (indicator #3), so X picked one. She sang as she got dressed, as usual, and we joined in. I had noticed her top wasn’t properly put on, it was bunched up around her back and sides, which must have been a little uncomfortable. I pointed this out to X, so he fixed it while putting Y’s jacket around her shoulders. She interfered and gestured that she didn’t want her jacket to be closed, so we accepted that. She had forgotten how to open the door of her room with her foot (indicator #4), so we opened it for her, and we left the building. When we got to the bottom of the drive, we asked Y where she wanted to go, and she pointed to the store we had visited yesterday. We went in, but unlike yesterday, when she as happy and talkative there, she was very upset. Lots of other customers were present when she screamed and cried, but none of them greeted her; instead they glared at her when she made sound. It seemed they were almost disgusted or embarrassed by her being there.

Can you identify with feeling slightly uncomfortable when a person less in control of their ability to express themselves communicates only fear and distress? This behaviour can stimulate a number of responses: disgust, embarrassment, discomfort, pity, annoyance. It leaves almost nobody unaffected.

When she bought her lottery ticket, the cashier didn’t make eye contact or say hello. Y looked lost and confused, and was so upset she didn’t even reach out for her change and lottery tickets, as she usually does. We moved to the quiet cafe part of the store and sat to check the lottery scratch-cards we had just bought; here she seemed less agitated, but her mood was still low. We went out and walked a little further; Y cried and screamed continually, even when we stopped regularly to ask if she wanted to go back indoors. When we got back to her room, she had difficulty removing her jacket, she was frustrated and tearful, and un-co-ordinated, dropping things or moving her arm uncontrollably(indicator #5). We brought her out to dinner.

According to the menu, they had had soup for lunch and were having soup for dinner. That’s hardly a balanced diet, or substantial enough to be considered a main meal in the day.

She gestured twice that I sit with her to eat, and we had to explain over again that we were not allowed to be present at mealtimes.

I asked X what justification The Facility has for this rule. He said they claim it isn’t good for a stroke victim to have company at meals, that it disturbs and upsets them. They also refuse X to visit anytime before noon, as they claim Y has rehab then, though the other residents claim she is just left in bed.

She was crying as we left, and as we passed the window, she couldn’t see us wave because a staff member was standing in front of her spoon-feeding her.

When we returned, at 8.15, the front door of the building was locked. We gestured to staff member 7 through the window; at first I thought he shook his head and indicated ‘no’, but then he changed and gestured that he was coming to let us in.

According to law, Y can receive visitors 24/7 as this is her private residence. Why might a staff member consider refusing us entry?

We went in, and could hear Y cry from the corridor. She was in her room, in the dark. As we approached the bed, we could see her legs tangled up in the blanket; she had been kicking, an indicator of pain. Y was not present at all: her eyes looked as though she were heavily sedated, her sounds were unclear and incomprehensible, and her movements very awkward and uncontrolled. She cried continually, but we realised she was not ‘awake’ in the sense that she was not responding to us at all, so we left soon after, at 8.50. The entire communal space was in darkness and everyone was in their rooms. 5 members of staff were chatting in the office as we passed. The front door was locked again when we approached.

Why didn’t the staff answer her cries?

1/21

DAY 21

Today I learned from Z that he and the staff are aware that I am writing this blog. 

We arrived late, about 7.15. We could hear Y screaming from the car park. She was in her wheelchair, parked in front of the TV in the communal room, alone. When we got into the room, she was sobbing quietly. She was very happy to see us- X, our friend and I- and when X said we hadn’t eaten yet so we had brought pizza to eat with her, she was delighted (smiling, laughing, talking, singing). We sat around her, I brought all four of us glasses of water, and we began to eat; Y shared X’s food. She kept laughing while we ate. The other residents were having supper at the dining table; I noticed the two staff members sat with them and talked to them during their supper, which I had not seen before (i.e. staff-resident social interaction). Y was not drinking anything, and seemed thirsty (licking her lips, trying to swallow, coughing); I asked if she would prefer tea to water. She nodded, so I asked a staff member for tea for her, as they were serving tea to the others. The staff member appeared to be resentful that I asked, but brought it over anyway.

V came over when she had finished to say hello. We offered her some pizza, but she said she couldn’t, and glanced anxiously back at the two staff, who were watching her.

Why should a resident feel too intimidated to accept an invitation? This tells of the atmosphere in The Facility and the way residents are treated by staff.

Our friend and I shared some of our food with Y too; she was very happy to be part of this, eating as a group. We were watching TV. Y pointed and commented on some of the news stories, recognised some famous people, laughed and smiled at images of animals and children, and cried at upsetting images (war, street fights, illness).

How can anyone say she has no mental capacity? I learned yesterday, reading documentation from the district court case which decided Y needed a spokesperson, that this decision was based on false evidence. A doctor testified that Y had suffered irreparable brain damage, when she had actually just suffered a stroke and showed full potential to recover. This doctor had no evidence or expertise in the field of neurology to back this claim up, as he is a local GP, not a specialist. However, the court did not challenge it. It seems that corruption has affected more than just The Facility in this district.

X left to drop our friend at her hotel, leaving me with Y for about 15 minutes; Y seemed comfortable, we talked, and I checked that she had drunk all her tea.

As I have said before, I am concerned that she doesn’t get adequate liquids, and I know how difficult it can be to encourage older inactive people to drink.

At 9pm (X was back), a member of staff came over and said loudly, without looking at Y, that it was late and Y would be put to bed now. Y objected, and tried to move in her chair past the staff member so she could keep watching the programme on TV. X intervened, pointed out that the programme lasted until 9.05, and asked Y if she wanted to watch the rest; she nodded. The staff member sighed, rolled her eyes and walked away; we heard her tell her colleague behind us that X had refused to let Y go to bed. When the programme had finished and Y had refocused on us- she was aware what the situation was, that the programme would finish and then she would go back to her room-we went into her room, and sat at the table to talk. Y was playful, laughing, and interested in the photo album her sister had left there; she recognised her relatives in the pictures, said ‘oooh’ and pointed at wedding pictures, laughed, recognised locations, and followed the text with her finger. The staff came in to put her to bed then. Y was upset as we left, promising to come back in in a few minutes to say goodnight. We sat outside, hearing her scream, for 20 minutes, before we were permitted back in.

In the meantime, I saw T struggle with his walker for all of that time before a member of staff came to help him up and into his room. I also talked with S. She had been sitting in a chair outside her room, in the corridor, trying to sleep, had given up because she was not tired, and had decided to walk up and down the corridor a few times before trying again.

Why had she been sent to bed when she clearly wasn’t tired? Why did she not feel welcome to be in the communal room until she was ready for bed? She has sat with us many times before, and is comfortable around us.

She winced when Y screamed, as did I; she pointed out that I looked upset.

Why had S been trying to sleep in the corridor? I know she’s afraid of the dark and of being alone. Why don’t The Facility do anything to make S’s living quarters more amenable to her needs and preferences (such as open the door, which S isn’t strong enough to open, or leave some lights on, or let her play radio)?

We returned to wish Y goodnight. She was distressed and clung to X. She was lying flat on her back again. Her cough is getting worse still, and it sounds like there is a lot of liquid in her airways, on which she chokes when breathing. We told her that our friend was writing, and that I had reported her case to the authorities; she was interested, talking excitedly, and her eyes were very much present.

I learned today from Z that he was aware I had made this. I gave information to the national health and social care supervisory board in confidence. As happened last time a friend of X’s did this, their complaint was immediately relayed to the facility in question, but not followed up by said authority. This practice, even or especially if standard, is highly questionable.

She burst into song, a verse of ‘Amazing Grace’, and we joined in, singing loudly. We talked a little more. X documented her medication, and she was happy for me to sit with her quietly. He saw, and pointed out to me later, one set of ear protectors in the bathroom, in her medication cupboard. We said evening prayer together and she fell asleep relatively quickly. We sat with her until 10.20 pm, kissed her goodnight and left.

This blog is still a few days behind real time, so staff at The Facility knows what is going to come up in the very near future. I wonder what their response will be; so far it’s been retaliation against the residents, as you will see.

1/22

DAY 22

6.15pm: Y was in bed, in the dark, lying on her back, and looked drugged. She slowly recognised X; as she saw our friends and I, she woke up, greeted us all warmly, and was very happy and alert. She tried to get herself up out of bed, throwing her left leg over towards the side of the bed, but pressed the button for assistance when reminded. Within 5 minutes, two staff members arrived, and we sat at the table in Y’s room as they prepared to lift her into her wheelchair. They didn’t ask us to leave and we made no gesture to go.

It was interesting to see that in front of five visitors, the staff answer the call for assistance promptly, and they don’t ask us to leave when they work with Y. Are they reluctant to create a negative impression on ‘outsiders’? Or is there safety for Y in greater numbers of people around her? What kind of place is this, where the residents need protection from the staff?

I was appalled to watch these two women toss Y from side to side and hoist her up, like a piece of meat; Y screamed and hit the woman on her left as she slumped to one side n the hoist, which had not been arranged evenly under her. We talked to her as she was lowered into her chair, and her mood brightened again. We had a wonderful couple of hours together. Six of us sat round her table, we had brought toast supplies, we made hot chocolate, and one of our friends had given Y a box of chocolates. The sheer joy shown on Y’s face as she pointed around all of us and beamed and laughed moved me to tears. Her slow graceful unwrapping of the box of chocolates indicated she appreciated a beautiful gift, and was extremely happy in the moment. As we shared supper, she talked with all of us at length, and sobbed only twice (she seemed confused and bewildered at these moments). She was alert, following the conversation, in a mixture of languages, and contributing. She instinctively shared her food, as usual, making sure everyone else got a plate, a drink, toast, a chocolate, before she took any, and kept an eye on each plate to make sure we were satisfied. She and I sang, then our friend’s son did some dancing and sang her a folk song in his first language; her utter engagement and appreciation was apparent in her eyes, face, sounds and gestures. X brought his guitar, and we sang a few songs together.

I laughed when X suggested some Elvis songs, and Y’s eyes suddenly brightened, she smiled and held her finger up, as if to say ‘Yes!’.

Our friend explained that all of us bar X had to go to make an appointment, but assured Y we would be back tomorrow; she nodded, and returned each of our goodbyes warmly. She was upset when our friends started clearing up the supper table and getting ready to leave before she had finished, but we sang again together before we left, and she seemed fine. X remained with her after I left (at 8.15), and didn’t join us again until 9.45.

Y’s happiest times are spent with family and friends, doing the things she loves; these are the simple requirements of a woman who has always been active in her community. Why does The Facility appear to do  what it can to prevent the residents from a quality of life this basic, by locking them in their rooms, harassing visitors, excluding them from communal meals, and refusing to engage in social interaction with them?

1/23

DAY 23

Today, like yesterday, we see Y in company, her true self, and Y tranquillised, confused and distant.

We went to say good morning at 10.30. X and I arrived first, to find her room locked, and two staff in there getting her out of bed.

According to her daily schedule, displayed on her bedside table, Y gets up at 7 for breakfast, and has rehab (speech and physical training) during the morning. Therefore, X has been told not to visit before 12 in case of disruption to these sessions. Other residents tell us Y is rarely up before 10.

By the time our friends arrived, Y was in her wheelchair at the table in her room.

Again, staff left her there alone, and we had to call after them to ask whether we could go in. They continued walking away and shouted back something vaguely declaring they had finished. This is not a place where the patient is put first.

Y’s eyes were unfocused and her communication vague, aside from warmly greeting us both. At 11, she was brought a tray of breakfast: a bowl of yogurt with her powdered medication poured on top, a small square of bread with a slice of cheese, and half a cup of tea.

This is hardly nourishing.

We listened to a CD while she slowly ate, the five of us conducting and singing along.

It appeared that the staff felt threatened with exposure at the number of people Y had around her today. They are very anxious about our friend writing or reading documents in the communal spaces, including the corridor, and repeatedly asked her to go into Y’s room, the last time quite rudely, saying she was disrupting the ‘peace and quiet’ for the residents. At 11.50, Y had finished breakfast, and we sang together until she was told at 12 to come out for lunch. She was wheeled out by a staff member, to the communal room. We explained we had to leave, and she was very upset, pulling our friend’s jacket sleeve in the direction of the place at the table where she wanted him to sit. A plastic bib was pulled around her neck as she did. She evidently wanted company. Her food was mushed up again, and a spoon all but tossed to her to eat. We left, waving goodbye as we passed the window.

I am repeatedly surprised at the careless thoughtless way the staff handle residents here.

We returned at 5. We offered Y the invitation to eat dinner out tonight: she immediately gladly nodded, and her face lit up with a huge smile. We discussed options of venues, then Y slowly got dressed to go out (today her movements were slow and un-co-ordinated, a typical effect of Imovane). She was clearly happy though. We walked out together. On our way, two other friends rang X, so she talked to each of them at length. Again, she laughed at my feeble attempts to push the wheelchair over bumps. The first place Y had suggested was shut, so we went to her second choice, the pizzeria. The staff there were friendly and welcoming. We sat together and ordered. Y was delighted to be in company for a meal.

This was the first time since she moved to The Facility two years ago that she had been allowed to go out for a meal.

She interacted with everyone who came in, as well as us, and ate three-quarters of a huge pizza herself. She thanked the chef twice before we left.

The front door of The Facility was locked when we got there at 8.15. Once we had hailed a member of staff to let us in, we returned to Y’s room; she was a bit tired. At the table, our friends had brought some flowers, late birthday presents. Y was happy and grateful, though she was becoming fretful and unfocused. We sang ‘happy birthday’ many times, in many languages, as well as folk songs, pop songs Y had known, and psalms. Y joined in everything, and looked happy when people tapped in time to a song or harmonised.

By 9, she looked worn out. We asked if she wanted to go to bed, and she nodded very certainly. It took only 5 minutes for staff to answer her bell for assistance.

Are the staff on their best behaviour because they are outnumbered, or they don’t know what our friends are there for and they’re suspicious?

After 15 minutes, the staff left Y’s room. We asked if we could go in, they said yes, but the room was locked. X asked one staff member- he had to chase right into the office to speak to her- to unlock it, and she claimed that it had been locked because we weren’t allowed to leave the door unlocked if we went out, i.e. off premises.

This is an absurd lie because it was not locked when we came back from dinner, only when we’d been in there already, and were sitting in the communal room waiting to go back in.

The room was fully lit, and Y was in bed and looked very anxious but sedated, responding very slowly even to X’s greeting. We sat with her for a short time, until she was calm and dozing off, then kissed her goodnight and left (9.40).

Y is happy when making music, spending time with familiar friends, and eating dinner as a social activity. Who wouldn’t be? It was wonderful to see her enjoy the normality of it. Our friend took a photo at the dinner table and posted it on a social network site. Many friends worldwide commented on how glad they were to see Y looking so happy. However, the staff at The Facility have responded with extreme retaliation, as you will see over the next few posts. 

1/24

DAY 24

This morning we went in to see Y at 11, so our friends could briefly say goodbye. Y was sedated, but at least out of bed and in her wheelchair at the table in her room. Her eyes were unfocused and she was clearly struggling to process everything. Our friend gave her a hug to say hello. She looked confused and stared at him for a few minutes before smiling in response. After we had been there about ten minutes, she seemed to come to, and warmly greeted us. She particularly enjoyed our friend’s son’s animated company; she loves children. We sang, and Y joined in for a few seconds before getting very distressed and looking like she didn’t know who we were or what was going on. Once X had calmed her screams, she seemed to be OK again, as if nothing had happened.

This sudden moment of panic, and her difficulty in processing information, are relatively new symptoms in Y; they began only since she has been residing at The Facility, and worsened as her sedation is increased.

Y was very upset when our friends said goodbye. X and I told her we’d be back later, she nodded and we left.

On our way, we saw P in the communal room. She is a resident, living next door to Y, and she is wheelchair-bound, with extremely limited mobility. Her head had fallen sideways to a very awkward angle, and there were no members of staff to be seen, so we adjusted her cushions to make her more comfortable. She smiled and waved.

We met Z this morning outside The Facility (we were leaving, he was arriving). He was very angry.

1. He said Y had been ‘uncontactable’ during the day yesterday (presumably between us seeing her in the morning and in the evening); by this he meant that Y was not mentally present, staring blankly and not interacting. ‘What did you do to her,’ he asked X. This seems very strange. Firstly, how can he still claim that Y has no mental capacity and needs a legal guardian, if he notices so clearly when she is unusually not alert? Secondly, the accusation of us having ‘done’ something to Y seems unfounded. It is worth noting that in June 2014 Z and The Facility had reported X to the police, claiming he was abusing Y, which resulted in her being very tired and unfocused. These are the same people who give Y increasing doses of Imovane, which is known to have these side effects. Thirdly, Y had been fine yesterday morning and evening with us, so is Y only ‘uncontactable’ to staff and Z (by her choice or unconsciously), yet strangely ’contactable’ to us?

2. He said we were not allowed to visit Y in the mornings, according to a curfew imposed by X’s sister. This is illegal.

3. When we told him Y had just got up and hadn’t yet had breakfast, although he knows this happens, he glanced around the five of us and muttered that he would have to ‘look into this’.

4. We told him she was very drugged with Imovane and Zopiclone in potentially lethal doses (7.5mg Imovane and 5mg Zopiclone daily, though they are the same drug); he said that was correct, as it should be.

5. He mentioned that the staff had told him Y didn’t eat lunch yesterday (ten minutes after her breakfast) and that we were to blame, by visiting her before lunch and disrupting her routine.

We went back this evening at 7.20, and found Z and Y sitting in front of the TV in the communal room with everyone else, finishing supper. Y was happy to see us both, hugging and kissing us, and gesturing for us to sit with her. X suggested he go and make us some supper so we could all eat together, and Y nodded. After he went to Y’s room, I talked to Y a bit, discussing the programme on TV she was watching with interest. Z asked in The Language Of The Country whether I spoke That Language; I answered in English that although I can understand much of what is said, I can’t speak any of The Language yet. He then asked in English what my business is here. I explained that I am a friend of X’s, how I met him, and that in my work world, I’m a musician in the UK. He didn’t seem to understand, but I got the impression that he expected a different answer and was mostly surprised. He then asked when I am going back to the UK, but at that point Y starting talking loudly, so I responded to her until she had quietened down again, after which Z didn’t ask again. He got up then and said to Y (he always calls her Mamma) that they would go into the room to join X now. Y shrieked, hit his arm and pointed at the TV, where her programme was still on. He ignored her and wheeled the chair into the room, telling me to take Y’s still-unfinished cup of tea with me. Y was a bit confused and quiet, apart from laughing and hugging X when she saw him again. We sat at the table together. Y moved X’s plate of supper to her left side, where he usually sits; Z moved it over to the other side, and took the seat on her left. Y shouted in objection, but calmed down when X sat on her right and reached across to hold her left hand. We had our supper; Y took a drink from her teacup each time X drank from his. Z talked to X and I, asking lots of questions about our friends being here. When Y tried to get his attention by tugging his ear, he played along.

This is unusual- he normally gently separates himself from whatever she is doing.

X massaged Y’s right hand, and Y responded by massaging X’s other hand and arm simultaneously, rubbing his palm, extending each finger individually, and rubbing along the muscles of his forearm. She was utterly gleeful, and X and I laughed along with her; it was a beautiful response. Z clearly felt excluded, so he tried to take Y’s hand. She slapped him away and shouted at him, which he tried to laugh off but she shouted more before returning her attention to X. She kept drifting off, her head dropping, eyes not quite shutting, and breathing very slow and shallow; anytime X awakened her by asking ‘Mamma?’, she became a bit more present again.

At 8.15, two staff members came in; it seemed preplanned, Z seemed to expect them, and he said in English that we were all leaving now because Y was going to bed.  X said we would come back in to say goodnight when she had been put to bed, as we always do. Z tried to prevent this, as did the two staff members (they said ‘it’s up to Z’, to which X replied that it was up to Y). When Z left, angrily saying to us in The Language Of The Country that we were making up lies about Y and The Facility, we overheard him telling the staff outside again that we were not allowed in to say goodnight. As the two women came back into the room, they put on their ear protectors as they approached. One of them, 9, said that if Y needed someone to stay with her until she fell asleep, she would do it.

This woman has been extremely violent to Y in the past.

We sat outside. The staff turned off the light in the room and shut the door, closing us out, them in; through the soundproofed, closed door, we heard Y scream an awful panicked scream for 25 full minutes before the staff emerged and announced in a fake-cheerful voice that all was clear. We went in, adjusted the lighting to what Y’s used to, and took a long time to calm Y down. She was extremely distressed. Her eyes were glassy but panicked. As I sat with her while X documented her medication as usual, she was dozing and sobbing, kicking her left leg, really struggling to breathe (she’s had a very bad chesty cough for 6 days, it’s getting worse, and she was lying flat on her back), and indicating stomach pain: she used her left hand to pick up her right hand and rub her abdomen with both, while kicking and crying out. We sat there until 9.40. When we left, Y was still very anxious and upset, but we listened from the corridor, and she calmed down. We met staff member 9 in the corridor again, and told her Y had indicated stomach pain. She shrugged and said that Y was upset by us being there, that it was late, Y was tired, and it was because of us that she got upset at night. She then said that she and her colleague would go in and calm her down again. As soon as they entered the room and shut the door, we heard Y scream louder and louder. We left.

We knew that treating Y last night would have consequences for us and, more dangerously, for her. What kind of place retaliates with punishment when a resident is publicly seen to be happy outside The Facility? In most cases, they get away with this because the village is extremely isolated, and the structure of authority seems to be run along mafia methods. Y’s case is more of a threat, as it is more in the public eye. This is our best way to protect Y. By reading this blog, sharing it, and thinking about what I’m seeing here, we begin to change a social mindset that healthcare always has the patient’s interests at the core of its decisions. Then we can challenge the structure which allows, maybe even encourages, such mistreatment.

1/25

DAY 25

We arrived late, at 7.50. A staff member said we couldn’t go into the room yet because Y was getting her medication. When we were allowed in, Y was in bed. The lights in her room were all on and the blinds were down. She seemed cheerful and talkative. X told her that I was writing this  blog; she raised her eyebrows, looked at me, pointed, smiled, talked and laughed. He also told her about the photo our friend had posted on a social network site today (of the empty ‘activities schedule’ on the noticeboard in The Facility’s entrance hall, last dated five months ago), and she laughed. We sat with her and watched some old comedy movie clips, which she really enjoyed. At 8.45, two members of staff came in and said it was time for Y to go to bed.

She was already in bed, albeit dressed.

We were sent out- Y was upset. We waited for ten minutes, during which time Y shouted and cried.

Recall that the staff should normally take at least 20 minutes to prepare Y for bed properly, helping her to the toilet, brushing her teeth, etc.

When we went back in, Y was visibly upset, but again sedated. She cried for some time. X saw that she had the remains of her hot chocolate from supper around her mouth, chin and lips.

Had she not had her teeth brushed? There was also a new addition in the bathroom which hadn’t been there since I first visited: toilet paper. Unstarted. Had she been taken to the toilet either then?

Y gestured distress in her half-asleep state: she would rub her nose, her face, pull her own hair, then thump the bed two or three times, screaming. She would be quiet again, asleep, for another minute or so before repeating. When we left, she was upset but quietened down when we said we would be back tomorrow. We heard her sobbing for a few minutes after, from the corridor, but when she was quiet, we left (about 9.25 pm).

I have since learned (on Day 33) that it is in fact illegal for staff to request us to leave the room when they lift or move Y. It is Y’s room, so if she asks them to leave, or asks us to help her instead, all parties are legally required to do as she wishes. As well as being a legal requirement,this is standard practice in this country.

Why can’t Y decide when she wants to go to bed? As I warned, this is a continuation of the punishment of Y by isolation, for X and I acting publicly in Y’s interests (the photo of us out for dinner two nights ago). This worsens over the next few days.

1/26

DAY 26

We arrived at 3.40. The room was locked. We knocked, twice; Z answered, crossly asking why we hadn’t just come in (we pointed out the door was locked.) He and Y were sat at the table. Y greeted us both warmly. After talking for a couple of minutes (Z always talks while Y is speaking), we suggested some fresh air and a short walk to Y. Z said no, it was raining (it was not raining). We told Y that her friend at the store had invited us for coffee, and showed her the text message from her friend; Z looked at it and said, it’s not so bad, dinner at The Facility was only pancakes anyway. We presumed this was permission.

Does Z always have Y’s best interests at heart when he makes decisions regarding what she is allowed to do? Bear in mind Z is the person who has denied her post-stroke care.

Y smiled and pushed her wheelchair away from the table, ready to go. Z said he was going home now, Y cried and pulled his hand to ask him to stay. He said no. X convinced him to stay so we could at least walk him part of his way home (he passes the store anyway). He hung around looking impatient while Y got dressed warmly to go out. Meanwhile, I washed up our teacups; seeing this, Y came over to me, took my hand, smiled and patted my back. When I had finished, she smiled again, and gestured in a school-teacher way ‘right, good, let’s move on’ with her left hand (this made me laugh).

As we left, Z told staff member 7, on duty, that we were taking Y out for a meal just before her dinner, and indicated his disapproval; 7 and the other staff were unimpressed, all four of them standing in the corridor blocking our path. We proceeded anyway, Y crying a bit as we pushed through.

From a wheelchair height I imagine this must have felt intimidating.

We got to the front door and saw the rain had in fact started. Y was still keen to go out, and when we went out, she firmly held Z’s walker so they could walk side by side; I pushed the wheelchair. We laughed as Y played with pulling her wheelchair into Z’s walker and pushing away again. We got to her friend’s store, and Z left, saying goodbye over Y’s head without looking at her. She was upset, crying and screaming after him. Her friend came out of the store and she cheered up to see him. We went indoors and into the kitchen as her friend served some food to us.

Y interacted playfully with him, pulling and pushing her wheelchair holding onto his clothes. We ate together; Y let me tuck a serviette into her top. She ate well, expressing enjoyment, and gratefully kissing X’s hand several times throughout the meal. Y’s manipulative skills were precise; she could see and pick up tiny pieces of food. Her friend talked to us at intervals, and she joined in our discussion, clearly expressing opinions and trying to explain her reasons (we could understand some of her speech).

On our way back, Y was upset as we approached  The Facility again. We went to her room, where she took off her coat, and then went out to dinner. At the table, she gestured to where she wanted us to sit, and was very upset as we explained that we were not allowed to be with her at mealtimes. A plate of pancakes with jam was placed in front of her, chopped up, and a spoon placed on top; this was her main evening meal. She cried and screamed, but we had to leave. As we did, I noticed R trying to cheer Y up by playing with a spoon and pulling faces; she laughed a little. We waved through the window as we passed to the car park- she pointed and called out to us, before being shushed by a member of staff, who began to spoon-feed her just as we left her sight.

In the following account, we see conflicting ideas from the staff today.

We returned at 7.50. The room was locked. We knocked but nobody answered. We looked around for staff, and eventually I found someone to come and unlock, which she did reluctantly, clearly irritated by being summoned from the office. The room was very dark and Y was in bed, very quiet, but her eyes were still bright. She greeted us both happily, holding on to me for longer than usual. We talked, then I sat with her as X went to document her medication.

When X was leaving the bathroom, staff member 5 came in at the same time, without knocking. As X said goodnight to Y, who was almost asleep, 5 came over and started whispering that we had to leave. X turned towards her, and Y could then see her, so she screamed, pointed to the door and kicked her leg.

This seems to be a clear indication that Y wished 5 to leave her private room. By not leaving immediately when asked, 5 is breaking the law.

The staff member spoke louder and louder as she repeated that we were waking Y up and we had to leave. X stayed kneeling by the bed, holding Y’s hand as he calmed her screams. The staff member came up close to X, bent down and hissed in his face that we had to leave. She then walked towards the door. X told her the door had been locked, and followed her quickly enough to see her try to discreetly unlock it as she went. She questioned that it had been locked at all, so he pointed it out. She changed tactic then and said it was important that the door was locked, that Y was locked in for her own safety, in case anyone wandered into her room unannounced (as this staff member had done just a couple of minutes before). X asked ‘But what about the staff, aren’t there staff on night shift?’ She said of course there are, but they couldn’t be expected to take care of everyone in the facility, as people move around so much.

This is a direct translation of what she said. Do these sound like the words of someone who should be employed in elderly healthcare? Does this sound like a properly-run facility for ensuring quality of life for its residents?

X asked ‘If the door is locked, how can staff hear if she cries out for help?’ 5 didn’t answer, quickly closed the door behind her and walked away; her colleague in the corridor had listened to everything.

The front door of the building was locked again when we left.

I can’t imagine how X has survived seeing his mother treated this way for two years. The fact that she is still alive is testimony to Y’s strength and determination. How can Z say she is too weak for rehabilitation?

Disbelief

I just had a very interesting discussion with a doctor. He is a charming, very well-established, respected GP in this part of the country, who has throughout his career taken special interest in care of the elderly.

I told him what I have seen. His response was that he would not engage in or comment on this case because it could not possibly happen.

He quoted all the laws that staff at The Facility should be practising,and did not accept that they are not. For example, he flatly denied that staff would refuse to allow a person out of bed, saying that staff always motivate the elderly people to be up and active. Perhaps an elderly person may communicate that they want to stay in bed, but the staff ensure that s/he is active for at least part of the day. Keeping someone in a dark room simply does not happen, he said. Mistreatment can happen, but will always easily be solved in a care planning meeting, as it is never intentional. There is no problem with The Facility or with Y’s case, because legally and ethically what we say is happening cannot happen.

This is not the first time I have spoken to someone who flatly refuses to accept the evidence. How can it be that a healthcare system refuses to see its failings? This is supposed to be a developed, democratic country.

While it hurts me more personally when friends shrug and say, ‘Well, what are you going to do about it? That’s the way it is,’ when this utter denial comes from a medical professional, I worry.

1/27

DAY 27

I warn you now, this is quite distressing. It is also crucial in understanding the staff and Z.

We arrived at 7.15 to see S standing at the door at the end of the corridor, holding onto the window with both hands and screaming at the top of her voice, a staff member (7) approaching behind her. By the time we got indoors, 7 had walked away again, and S was still at the window.  Y was watching TV with V. Both greeted us warmly, but Y began to cry and clung to X. She was very distraught. When we investigated her room, we found a strong smell of faeces in the bathroom and a used diaper in the trash. The toilet had not been used (the commode is dusty): Y had been forced to defecate in her bed again, which always upsets her.

V got up to leave. While she and Y had been sitting together for some time (V said Y was there for supper, which must have been early tonight), Y was disturbed and lashed out at her. V touched her arm lightly and wished her goodnight.

I saw S looking very anxious so I invited her to come and sit with me. She was happy, holding my arm and thanking me. We chatted for some time, X translating occasionally; we were laughing about the fact that I understood very little of what she said but our gestures were speaking for themselves.

Meanwhile, X, with Y’s consent, went to massage her right hand. It was unwashed again; when he cleaned it thoroughly, he showed me that she has a fungal infection developing between the fingers, which are usually clamped together. While massaging, he realised Y smelled really bad, and wondered if it was her clothes, or something on her skin around her neck and shoulders; I couldn’t identify the smell, but when I checked her wallchart, it appeared she hadn’t been washed in several days. She also has no record of her toilet usage for the past three days, and her last physical therapy session was dated six days ago (when, it was noted, Y ‘didn’t co-operate with the session’). This is contrary to her schedule provided by The Facility, which states that she is offered therapy (KP) every weekday morning from 10am.

S and I continued talking; she warned me that some staff were angry with me. She also begged me (I’m not exaggerating) not to leave her alone there, and to tell her when we were leaving so I could walk her to her room because she was afraid of the staff and trusted me. She asked whether I would be here for Christmas, if we could have coffee together sometime, and whether she could come for a walk with us and Y one day.

Y’s massage was productive. Her muscles were very stiff, X said, but she progressed to fully extending and stretching her fingers and arm after an hour.

S then expressed that she would like some coffee. I helped her up and walked to the kitchen with her. We knocked; 7 waved us away. We waited a moment, and 9 opened the door, pushing it forward so it hit S’s foot. I said ‘S would like some coffee’. He snorted and looked surprised, as did 7. S walked into the kitchen. 4 and the other staff member approached and asked what was going on. 9 explained, and said he’d bring it out to her. We left the kitchen, surrounded by the four staff; 4 taunted ‘Well, did you have a good walk, S?’ We returned to the table, and 9 set down a cup of coffee and a biscuit; S thanked him and looked very pleased. (Later, she expressed surprise that we too, sitting at the table, hadn’t also been brought coffee, as is normal courtesy.)

It was funny to notice a vase of fresh flowers on every table today; there had never been any before. Over the past few days, staff often put an arm round a resident’s shoulders while talking to them: this is for show, I think, as the residents look as surprised and unnerved as I would be in that position.

At 9.07pm, 9 and 4 approached. 9 leaned on the arm of Y’s chair and said to X, ‘Now we’re going to start to make Y ready, and you can decide if you want to say goodnight now or wait’ (X said ‘Ask mom’). Y had been following the TV programme with interest (she and X had even discussed it with 7 a few minutes before), so she objected clearly, lashing out, screaming and trying to push his hands off her wheelchair. He maintained his hold and asked her ’Do you want to go to bed?’ Y hit him. ‘Don’t hit me.’ 9 turned to X again, ‘She needs to go to bed if she is going to be able to brush her teeth and do everything she needs to do.’ X said, ‘Talk to her then, she understands’. 9 spoke to Y (‘Shall we brush teeth and get ready?’), who pushed him away. 4 said to X, ‘Y is saying yes’ (Y was still screaming, pushing 9 away and lashing out at him). S pitched in, telling the staff to behave and leave Y alone, that Y was clearly saying no and the staff weren’t listening to her, which X backed up. Y screamed and hit 9 again; S said, ‘There you go’. He said, ‘What?’ in a threatening voice, and S repeated her last comment.

I am worried about retaliation for S.

S repeated that the staff aren’t listening, and ‘that’s the fact of the matter’. 9 asked X, ‘What do you want us to do?’; X said, ‘Talk to mom, she’s the one living here and I think you’re here to help her’. 9 said, ‘But you’re holding her hand. She’s objecting now but we both know she needs this so she will feel OK and be able to do what needs to be done.’ Y screamed at length. X said 9 was talking over Y’s head, and asked him to talk directly to Y; 9 denied this.  9 turned away and gestured annoyance at 4. She approached then, crouching beside the chair and strongly taking hold of Y’s arm before she was in her line of vision, to prevent her lashing out. 4 repeated, ‘It’s time to brush teeth and go to bed. Hitting me, you don’t do that. Come, we start with brushing some teeth. It’s time now.’

This is no way to speak to any adult.

They tried to pull Y away; Y cried, screamed and lashed out. 4 then stood up and said in a threatening tone, ‘X, let go of her hand’ (Y was still holding X’s hand post-massage- he was not gripping her hand at all, so he said, ‘I’m not holding her hand’). ‘No, and she’s not holding either’ said 4 sarcastically. She asked again that X take his hand away; he repeated that he wasn’t holding her hand, and asked that they talk to Y, not over her. Y was clearly not ready to go to bed yet, she was awake, engaged in an activity, and was expressing herself comprehensibly. 4 and 9 stood glaring at X for a few minutes, then stormed away muttering to each other.

Y was gleeful at this small victory- she hugged X and touched his face. Next minute, all the lights were switched off. In the dark, Y was anxious for a few seconds, then gestured appreciation at S, laughed and smiled for some minutes. I hugged S and thanked her. This was a very brave action, and both of us knew she would be punished in some way by the staff. We continued watching TV, Y objecting to some people’s faces (!). She also sang.

After a few minutes, it appeared the staff had called Z to tell him. He marched in, very angry, followed by 9 and 4, also looking angry. All the lights were suddenly switched on again. He approached me first, coming very close to my face, and said, ‘It is time for Y to go to bed, she is 92 years’, while striking me twice on the shoulder with his outstretched pointing hand. I said, ‘Don’t touch me.’ He pulled back, then approached me again; I immediately said ‘Please don’t touch me.’ He laughed, but was shaking with anger and red-faced. Y screamed angrily. He turned to X, striking him too:

1. ‘X (using his full name), if you have any sense, Y is 92 and she has a sickness that you have never understood.’ Y screamed. X said that Y understands, so it’s not necessary to talk over her head. Z denied this, and Y began to hit and push Z away. ‘Do you see what she’s doing?’ X said. ‘Yes, yes, yes, I know, I have seen’ said Z. Y objected again and began to cry with anger.

2. X asked, ‘Are you happy with this?’ over Y’s screams. Z retorted, ‘Are you happy?’

3. Y screamed again; ‘Ah yes, little mama, I know that you agree with our son,’ Z replied. Y laughed and reached out for X. (Is Z deriding Y, or is he openly acknowledging there is no need for Y to have him as her spokesperson, as she is clearly capable of her own thoughts and decisions?)

Z turned to me and said that I was not allowed to be here, that visiting time was over, that I could be here anytime between 12.30 and 4, so why didn’t I just come for all of that time every day.

National law declares that imposing visiting hours is illegal.

This is where discussion begins to get nonsensical.

He said to Y, ‘Now you know X had to go to bed when he went to school, so that he would feel good the next day.’ They laughed together. He addressed X again, accusing him of winding her up, which was why she was screaming; Y objected in Xs defence. Z went back to saying that Y has a sickness that X doesn’t understand, and that we (X and I) use it against her, as agitators.

X asked Y to be quiet for a moment so he could talk to Z; she immediately stopped and smiled.

X answered Z, ‘I know this sickness she has and that you have refused Mom care for that sickness. How can you defend this? She needs care for her sickness.’ Z laughed and said, ‘No, she seems to feel well by this treatment’; Y objected very strongly, hitting, crying, screaming. Z said to Y, ‘Tell X to come here during the day and not the night’, and he laughed.

This is absurd and cruel, to deride Y’s communication methods thus.

Y screamed again. 4 interrupted, ‘Now Y has to go into her room because she is waking up everyone’. X asked 4, ‘Are you blaming mom for waking them up?’

(The point was that Y made no sound unprovoked.)

4 answered, ‘You know very well you’re supposed to be in there (gestured towards Y’s room), you have nothing to do in here. We don’t blame her, we blame you for this. Let go of her hand! Now!’

This is the welcoming public space for residents and their guests?

Z turned to me: ‘The time is up now.’ I answered, ‘That’s illegal,’; Z and 9 laughed and turned away. Z turned back to me and said, ‘I hope you finish now. Go. If X don’t go, you go home.’ 4 and 9 told me I had to leave. I said, several times, ‘I will stay with X.’ 9 said OK, but I had to go into Y’s room, to which I readily assented. S looked very afraid; X said no, stay with S, she asked you to. To the staff, he said, ‘You can’t force her (i.e. me) to go into Y’s room’. I turned to S and said that if she wanted to stay here, I would stay with her, and if she wanted to go to her room, I would stay with X. The staff told me I had no right to even walk with S to her room because I was not her next-of-kin.

This is illegal.

4 addressed me in The Language Of The Country, telling me to get out of the communal room. I asked her to repeat herself as I am slow to understand The Language. She said (in The Language) that’s too bad, she doesn’t speak English. I pointed out that I had heard her speak English to me before; she said sarcastically (in The Language), ‘Have you? Oh well done.’ 9, who could speak English, repeated that I was not allowed to help S; he asked if I worked here, I said no, then he looked smug and said to leave business here to the staff. They walked S away quickly. As she left, I kissed her goodnight, and she turned to wink at me and raised her fist (a gesture I understood to be supportive).

X asked Z again ‘Would you consider again the treatment Mom needs?’. Z didn’t answer. X asked ‘So you let them mistreat mom like this and you don’t do anything?’ Z snapped, ‘Did we mistreat you, X, did we mistreat you when we asked you to go to bed?’ X said,  ‘But this is not what the case is about.’ Z pretended to slap X’s face as he objected, ‘Yes, that is what it’s about. It’s impossible to talk to you. Can you listen to me?’ X said ‘Mom needs care because she had a stroke’; Z asked, ‘Is she going to stay up all night? Is that the right treatment? Is that the right treatment?’ X said, ‘I think the right treatment is to talk to mom, treat her like a person, don’t give her Imovane, and let her go to bed feeling safe in the evening’. Once Imovane was mentioned, Z switched tactic, telling us what a nice day he had had with Y yesterday; he said she had been given a shower (not according to her record), that she slept afterwards, ‘but then X would have said she was on drugs, but she wasn’t, because she threw the blanket off herself’. X replied, ‘well, you’re drugged if you’re given drugs’. Z objected and X repeated himself; Z repeated that she threw off the blanket, that they let her go to the bathroom when she wanted, she defecated, and then they played a board game twice. He couldn’t remember if they had gone outside or not. ‘And that you don’t do if you’re on drugs and empty in your head,’ he finished. X said ‘You don’t really understand this. If you give a person drugs, and that person manages to get from A to B, does that mean the person is not drugged?’ Z reminded us accusingly that on Day 24, when we had been out for pizza, the next day she was unresponsive when he got there (we had been there that morning before him and she was not unresponsive).

All this time, Y was silent but looked distressed. X tried to explain the conflicting arguments to me in English.

Z said, in response to X repeating that a drugged person is a person who is given drugs, that he takes 5 medications, all of which proclaim side effects, ‘so should I not take these then?’ X replied that it depends on what medication and why he takes them. Unsatisfied, Z said, ‘Answer now! Should I not take them?’ X repeated his last comment. Z replied, ‘Yes, for me, they have helped, and I can choose between two things, to be sick or the chance to become better’. X said, ‘So that’s why you should not give Zopiclone’, implying that it does not help Y. Z didn’t recognise the name of the medication. X suggested that Z try 5mg of it and see what he thinks; he added, ‘But you should know this, if you take alcohol every night, then you’d also be drugged’. Z claimed then, ‘But we stopped giving her Imovane and then she couldn’t sleep at night’. X said, ‘Well of course, because of how they treat her.’

I could see 4 and 9 gesturing and whispering to each other at several intervals. X mentioned that Y had not been taken to the bathroom, and that she and/or her clothes were unwashed, asking Z to find out why. Z said he had been there up to 4 pm today and she didn’t smell then. He said that X smelled bad too, and mimicked sniffing X’s clothes and asking what the smell was. X mentioned also that Y’s hand smelled unwashed, and I said that she had a skin infection; we asked whether Z should check this out, since staff were evidently available now (hovering behind Z).  X added that she probably needed to be washed tonight. ‘X,’ Z said, ‘the researchers have concluded that sleep is crucial’.

How does this answer the question asked?

X replied that it has also been proved that keeping someone in bed for 16 hours a day is extremely dangerous. ‘Why has everybody else died except Y?’ Z asked. ‘Many people have died, I read in the newspaper, in their 60s and 70s. I’m above that already,’ (‘That’s good,’ interjected X) ‘and Y is much over that, she’s on overtime already, and she’s alive.’ X added ‘Well, let her stay alive then.’

Z went on that his father had wanted to go to bed at 8 and wouldn’t let them keep him up. X called a return to the subject, asking about Y’s smell and whether she would be washed before bed. Z said, ‘No, but they usually change her clothes’. X asked if this would be checked, and Z said no, he wouldn’t wake her up (at this point, Y was sitting alone in her room in her wheelchair, without staff), but would check in the morning. The staff then went in to her room to put Y to bed, so X said that Y couldn’t be in bed already. Z said, ‘No, you should not go into the room. It’s like we have church service here and you come late,and then Y is happy to see you so she is shouting, and then the priest can’t start the service!’ X asked, ‘What kind of service would you like, a boring silent one?’ Z continued muttering that people shouldn’t be allowed to come late to church: ‘it’s enough that R starts snoring in the service, but we’re used to that’. X disagreed, saying the service should be open and welcome to anyone, as the people they are, even if they snore or talk or sing loudly.

This conversation continues at length, but I don’t want to transcribe it because IT HAS NOTHING TO DO WITH ANYTHING. This is just getting ridiculously irrelevant to the fact that Y has no choice in her daily life.

X said, ‘But mom needs to be able to express herself at any time’. Z launched into a tirade of times when X has been late for things.

Again, I tuned out because this is irrelevant and nonsensical.

In short, Z refused to enquire of staff why Y wasn’t taken to the bathroom, and why she was unwashed and smelly.  All this time, we could hear Y scream in her room. Eventually Z calmed down, and sat beside me on the sofa, talking quite normally, before putting on his hat, picking up my jacket from where it had fallen, and leaving. X and I stayed a little longer, then checked through Y’s door: the room was appropriately lit and Y was quietly breathing and making sounds, though she was kicking, so she was not comfortable or calm. We left at 10.25; the front door was locked again, and we were watched by 9 and a night duty staff member I didn’t recognise, all the way to the car.

Incredulously, I remind you that Z is Y’s legal guardian and spokesperson. In this incident, it is clear that Z has a violent aggressive nature, and that he seems very confused in his logic behind decisions regarding Y’s care, not the least of which is that she suffered a stroke and he refused that she be treated for it.

1/28

DAY 28

We arrived at 8 pm. There was a notice stuck to the entrance door, on municipal council notepaper, which approximately translates as follows:

Local Care Facility ‘The Facility’

Decision regarding limitation of visitors’ access to communal spaces

During the period 9th October 2014 until 30th November 2014, visitors are referred to the apartment of the person living there, alternatively that the visit is in the entrance hall of The Facility.

If you have any questions, call

Facility Manager xxxx xx xx 01

Nurse I xxxx xx xx 06

This appears to be a direct response to our altercation with staff yesterday.

I am seeking legal advice, but early indications show that this is illegal in this country. It is also worth noting that, although this seems a peculiar time-frame, and no reason is given, staff are aware, from Z, that I am planning to return to my family in another country in December.

We proceeded to Y’s room; it was very dark, Y was in bed, half-asleep, her eyes were unfocused and her breathing erratic. When X documented her medication, he noticed that two backdated physical therapy sessions had been marked as done. I am suspicious that my report to Healthcare Ombudsman yesterday has been leaked to The Facility, hence this and our isolation from other residents when visiting.

If standard, this seems a highly questionable practice. Healthcare was privatised here in the mid-1990s, and standards have fallen since then, by all accounts. The fact that the ‘ombudsman’ is in fact a government body, i.e. there is no independent body to oversee that healthcare is carried out to a set standard, indicates the difficulties faced by those who wish to challenge something in the system.

I did notice, through the slightly open door of Y’s room, that T was walking around looking for staff, in his underwear, his trousers round his ankles, and he seemed very distressed. After a few minutes spent looking and failing to find a member of staff (though the facility manager and two staff members were in the office), he sat in his usual chair. A member of staff who began patrolling the corridor outside Y’s room then shooed him back to his room before continuing her sentry. We left soon after arriving, so as not to disturb Y. She smiled and said goodbye, and clung to X for a few minutes as he said goodnight. As we left, I noticed most apartment doors were locked (by staff or residents?). We left at 8.40.

1/29

DAY 29

We arrived at 4.35. Y was sitting in front of the TV. Three other residents were in the room awaiting 5pm dinner. We greeted her, she gestured for X to pull up a chair and we sat down. We spoke for a few minutes. At 4.45, 6 (a staff member) approached from behind and put her hands on the wheelchair. She said there was a rule that we were not allowed to be in the communal room, and began pulling the chair away (Y could not see 6, and looked surprised and anxious). X asked why; 6 replied that her manager had set the rule, she was just following orders. She repeated in English that we had to be in Y’s room and pulled the chair away. Y’s fingers were still interlaced with X’s (she had been holding his hand since we arrived), and she cried out as they were wrenched apart. We followed; the other residents looked shocked and fearful. I apologised for disturbing them (I was being sarcastic, but the look on their faces were of surprise and anxiety). We sat at the table in Y’s room instead, X explaining to her why we had moved, to calm her distress.

Even if the rule imposed was legal, how could it possibly be difficult for staff to approach the person concerned, so they can be seen, and explain what they are going to do, before acting? Y is a reasonable adult, she can understand, as is shown by X. Give her that respect at least.

The fact that the staff deny responsibility for their actions, claiming to just follow orders, harks back to other examples in history when people have similarly disengaged from the abuses they are carrying out.

We decided that since we were in there, we would sing. X picked up the guitar; Y was so happy (‘ooh-ooh-ooh-oooh!’). He then realised he needed to remove his jacket to play, so Y reached out and held the guitar for him. When she accidentally bashed it against the wheels of her chair, she looked apologetic, and glanced at X. He said it was OK and she smiled. He strummed the strings: they needed tuning. He showed Y an app on his phone for tuning the guitar; it identifies the pitch and changes from orange to green when the sound is in tune. Y nodded and watched with interest, gesturing when the note-letter-name turned green. We sang a couple of songs in The Language Of The Country, Y noticing approvingly when I knew the words and joined in. X and Y then taught me the words of another song, a bit at a time, and we sang it together. Y smiled kindly when I struggled with some of the unfamiliar sounds, and nodded when I got it right. She expressed preference for some songs above others, and for me tapping the table in time to some songs but not others. While we sang ‘Oh when the saints go marching in’, at every key change (at the beginning of each verse), Y waved her arm and sang a bit louder. She conducted in some parts and tapped in time on the table in others, singing all the time, and she finished the last chorus with a flourish with her arm. We all laughed together. At 5.07, we realised we were late for dinner, so we went out to the communal room. Before we did, X again explained that we could not stay during the meal, and Y got upset, even when we said we’d be back after.

Words can’t describe the look on her face at this terrible realisation, fresh to her every day. As a mother and socially active community member pre-stroke, coming from a rural background, she cannot imagine anything worse than being left alone to eat meals. It would not take much to allow this basic request for company, but would make Y’s life so much more bearable. The same goes for all the residents here. This is just one of the many ways The Facility intentionally reduces quality of life for its residents.

She was really happy and hugged X when he said that we were writing to authorities and had contacted the police, and that things were going to change for the better, even the tiny details like ensuring she could eat meals in the company of her friends and family.

In the dining room, dinner was late anyway. We brought Y to her place. R was coughing and struggling to breathe, and his mouth was foaming a little. I brought him a serviette but didn’t know what else to do. S wasn’t at the table. She emerged from her room, walking up and down the corridor, very distressed and haggard, looking for a member of staff; she was not wearing trousers, and needed assistance to get dressed. After a couple of minutes, 6 approached, pushing Q in her wheelchair. She saw that I had approached S to kiss her hello and I was asking her how I could help, so she left Q (i.e. left the wheelchair in the middle of the room, without saying anything to Q, who looked confused) and pushed me away, putting her arm round S’s shoulders and coaxing her back to her room.

She pushed me by standing in front of me, facing the same direction, and walked backwards, wrapping her arm around S as she did, so cutting me off. It seemed a very smooth move. Practised?

I was surprised and stepped out of the way. We collected our jackets; Y was still crying so X returned to explain to her again that we would be back later, and she calmed down a little. I said ‘Bon appetit’ to everyone; V and W smirked back at me. Y waved to us as we passed the window.

We went back at 7.50. We heard Y scream and cry from the car park- it was horrifying, she sounded like she was being torn apart. I noticed the premises smelled very strongly of human waste, and also the floor was filthy (the floor in Y’s room is usually dirty, but this was the corridor and dining room as well). We met V along the corridor. She was very distressed. At first she said ‘I don’t know if it’s worth saying it,’ but finally admitted something was wrong. She wouldn’t divulge further (she looked around anxiously), but we suspected she was referring to something that had happened with Y, and we reassured her that we were working on it and that things would get better. We continued- I greeted T on our way and he smiled and reached out for my hand. The smell was getting worse. We opened the door of Y’s room and the smell was overpowering; it smelled of human waste and another smell, like old blood or something rotting. It made it difficult to breathe for the first few moments, and I felt nauseous. How could anyone leave someone lying in this? We guessed that Y had not been assisted to the bathroom again; while we had been talking to V, 6 (staff member) had walked past on her way to the office, and tossed a trash bag with several used diapers on the floor beside us as she went.

Apart from posing a tripping hazard and a hygiene issue, this is a very antisocial act.

Our guess was confirmed when we went into the bathroom and found no trace of smell there. X approached Y, and she cried for a long time, very long pained cries. I admit that to see her suffer made me cry too. She was very drugged, she couldn’t co-ordinate her head movement or limbs well, she was extremely upset, and waved me away, clinging tightly to X; X described her as ‘devastated and ashamed’ of having been forced to defecate in bed again. She was also clearly physically uncomfortable, kicking her legs and trying to move herself around. When X went to the bathroom to document her medication, I sat on the floor (I don’t think Y registered I was there or who I was at this point). She seemed to have nightmares or hallucinations, in her half-sleep- she would scream, point, wave her arm as though trying to hit something away from herself, then collapse into sobs. She did this repeatedly. We waved at the surveillance camera hidden in her room, which Z says the staff use to watch Y, but there was no response from staff.

In an emergency, would they even assist Y were we not there? Is having hidden surveillance cameras in every private residence in The Facility legal, ethical or necessary? I am awaiting an answer on that from the police and from the national healthcare ombudsman. I have been waiting 8 days now, at time of posting.

I also noticed that, although she had been lying on her side for the past two nights, so her cough was less troublesome (it still sounded very unhealthy when she was upright), she kept clearing what sounded like a dry throat and licking her lips: she was thirsty.

I am still concerned that she doesn’t get enough fluids. Her tea or juice is often left untouched, and there is never a glass or jug of water in her room.

X returned just in time: Y had suddenly noticed me and was frightened, as she hadn’t registered I was there before. She clung to him and cried, though we tried to wish her goodnight several times. Eventually she let go and we left, adjusting the lights so she would feel more comfortable. We stood outside in the corridor debating whether to go back in, as she was crying loudly and calling for X. In the meantime, I saw S eating supper alone. I hugged her hello, and she said (X translated) that she wished we were allowed to be in the room with all of the residents. She was angry and upset. She rarely has visitors and has said she is lonely at times. I thanked her for standing up for Y; she nodded and put her hand to her heart. A staff member approached and stood glaring at us until we left. The front door was locked again.

It appears that the staff are relying on my being broken down and giving in from the intimidation and guilt that it is my fault residents are being punished. While it is incredibly difficult to see and emotionally draining, I know the only way to change it long-term is to be here and to publicise what is going on, as well as chase up reports to the various authorities. What is going on is not because I am here, but because these residents are defenceless, the location is isolated, the structure in place to protect and serve citizens is flawed, and it is easier for staff to neglect and disengage than to do their job properly. Human nature, to one extreme.

1/30

DAY 30

As of tomorrow, 18/10/14, I will return to posting only once a day, as I need to spend more time with Y and chasing up the various authorities to whom I have reported the case. 

This post is quite distressing.

We arrived at 6.40pm. As we greeted T and W, who were both happy to see us, staff member 7 approached and said Y had ‘had a bad day’, that Z and some others had visited, he didn’t know what they had done, but Y was extremely tired.

Had Z arrived to find Y exhausted after spending time with us, uproar would have ensued, and we would be accused of any number of abuses.

We thought this a strange way to greet visitors, but we said OK and went into her room. It was very dark- only one small lamp was on. We adjusted the lighting and found Y lying in bed (it was 6.45pm), heavily sedated, unfocused and unaware of her surroundings. She lay with the top part of the bed slightly tilted up, but the pillow cast to one side, so her head tipped back at an angle which looked very uncomfortable. Her two upper arms were propped up with pillows, forcing her shoulders and arms to fold in over her chest. She was really struggling to breathe and her face and arms were very white. She hugged X hello and cried. She hugged me too, smiling, laughing and pulling playfully at my jumper. I noticed her skin was very cold and clammy, and pointed it out to X. She pulled me back to her when I went to extricate myself, and she laughed. I could see her face then suddenly cloud over, and she was very distressed, not knowing who I was. She grabbed my hair, wrapped it tightly in her hand, and pulled my head back and forth, from side to side. X and I took a long time to loosen her grip, though I didn’t want to distress her further by showing any distress. We sat with her. She dropped back into half-sleep after letting my hair go.

X and I noticed that she was breathing more poorly than usual, and X said he had noticed this significantly worsen in relation to how much sedative she was given (Imovane is dangerous for a stroke victim who suffers from sleep apnea, as Y does, by making breathing very difficult). She also still had that chesty cough, so her breath sounded sore and rattling. She would breathe about 7 times, then stop for anything from 15 seconds to a minute, before breathing again (usually 3 deep gulping pained breaths, and then a few ‘recovery’ breaths, before she stopped again). As time passed, her breathing between stops sounded harder and slower, and I became very worried.

We had heard supper being served out in the dining room (late, at 7.50), and had wondered if Y would be given any. 7 now came in, carrying a plate and cup for Y, but when he saw the room was dark, he assumed Y was sleeping (though he saw us sitting there waving him in) and he made to leave. X called him over and expressed our concerns about Y. 7 checked her pulse, touched her forehead and skin, and agreed that something was wrong (retrospective note: the facility manager, 15, told us at 10.35pm that 7 had not thought there was any need for concern). He said he would contact 15, who is both facility manager and the duty manager for the night shift tonight, but that he ‘couldn’t promise anything’, and he left.

1. Surely the duty manager is obliged to be on the premises and accessible in case of emergency?

2. The facility manager told us at 10.35pm that 7 had not contacted her; this may or may not be true.

3. We did not see 7 again- no return to say he’d done anything, that 15 was on her way, that his shift was ending but he had passed on our concerns, nothing. This same man claimed a few days later that he is not responsible for any of the residents.

I objected to the way he handled Y. He had touched her face, forehead and forearm without telling her first. He tried to take her pulse on her neck, reaching across the front of her neck to the other side, when she awoke from her deep stupor to weakly reach up to try to take his arm away, whereupon he took hold of her wrist, placed it back across her stomach, and tried to take her pulse at her wrist instead. He said pulse was normal, but she was very pale, clammy and cold, and he could see her severe difficulty breathing. He gently slapped her cheeks a few times to see if any colour arose. I disliked him touching her without explaining what he was doing, and putting his forearm across her throat. I was shocked at him slapping her face, however gently. X explained that had 7 considered something was seriously or critically wrong, maybe that was OK to behave like that. I’m not convinced. I think it careless, potentially damaging, and extremely disrespectful.

We waited 50 minutes, until 8.50pm, for a response from 7 or the facility manager. Y’s breathing was getting slower and more difficult. I was extremely worried- she looked like a corpse, her head thrown back, mouth open, tongue rolling in her mouth (I worried she would choke), very white and cold, and at times not breathing. I said I wanted to call a doctor. On X’s suggestion, I rang a friend of X and Y, who manages a stroke rehab centre, and asked him what I should do. He said Y was an old woman who was very weak, and they would not be able to cure her, while saying at the same time I needed to call an ambulance and get her to the hospital. He spoke to X then, repeating that an ambulance, or a doctor, needed to be consulted.

X thought that I should call for the ambulance. The local ambulance staff are employed by 15, the facility manager, and had previously been used by her against X, throwing him out or preventing him coming in to the building. If he called, they may not come.

I called 112 then and told them what was happening. They sent an ambulance, one of the two based in the village. The two ambulance staff arrived a few minutes later, at 9.10pm. They opened the door hesitantly and looked in. I waved them in. They stayed at the door and asked had someone called an ambulance. I said I had, they looked surprised, and they stormed in, complaining loudly that I had not given the right address, room number or name (all not true). I told them exactly what I said to the 112 person. They said they hadn’t received that message. I said, ‘Well, there must have been confusion in communication. More importantly, Y is unwell,’ and I gestured to her bed.

The ambulance staff had been followed into the room by a staff member I didn’t recognise, who looked bemused at the situation as she introduced herself in The Language Of The Country and in English, and shook our hands before leaving. The ambulance crew seemed very irritated as they began to take her vitals, roughly waking her with their handling. Y was afraid and cried out. (The ambulance woman, no.xx8, snapped at us ‘She was asleep! Now look!’) The ambulance man (no.xx9) held Y’s flailing arm still while no.xx8 checked oxygen levels, pulse, blood pressure and temperature. These all read normal, as xx8 shook the instruments at us angrily to show the readings. They complained to us that there was nothing wrong, all was fine. I rang the 112 person again, as he had said to ring him back if I had any further concerns. I reported what was going on, knowing he could not do anything more, but I wanted it recorded in case anything happened subsequently, which I explained to him. He said OK, and I hung up.

No.xx8 answered her own phone then, and went to leave the room to take the call, but she couldn’t open the door.

I have mentioned it before, but here is further evidence that these doors are not suitable for use by weak elderly people, if a strong woman in her late thirties struggles to open them.

I went over and assisted her, explaining that the doors were very stiff. She left. No.xx9 was watching me and looked a bit surprised, so I said, ‘They sometimes lock her (gesturing to Y) in so she can’t escape too,’ and he smiled. I sat beside Y again. X was holding her hand to calm her, while talking to our friend at the stroke rehab centre at the same time. The ambulance man, xx9, asked me whether Y had been given sleeping tablets. I said yes, what tablets, what dosage, how often, and how long she had been given them. He made a taken-aback facial expression, then excused himself, saying they were going to talk to the nurse (I wasn’t sure who this referred to, as I had only seen 7 and the new girl there, and neither of them were nurses). X finished his call (our friend had told him to request a doctor, which X had done, while saying at the same time that it can be hard to accept when a relative is extremely unwell and/or dying). We sat with Y, calming her. (15 told us at 10.35pm that the ambulance staff had said there was nothing wrong and they were not going to pursue it. She said they had not mentioned X’s request for a doctor.) The ambulance staff came in again, and told us nothing was wrong with Y, this was not an emergency, they denied that Y was pale or cold or had any problem breathing. They also mentioned that 15 and Z had talked (though they didn’t say when or how it related to the incident) and that the request for a doctor had been refused. They left.

Mentioning that 15 and Z had talked is just another passing attempt to make us feel intimidated or unsure.

All this time, Y was extremely confused, afraid and not aware where she was or who anyone around her was, and she was laughing, crying, and indicating discomfort (kicking, pulling her quilt off, pulling her hair, rubbing the stye in her eye). We sat with her until 10.30pm, trying to keep her as calm and comfortable as possible. She was very upset when we went to leave: she didn’t want us to go.

We saw 15 in the dining room and asked her a couple of questions, which she reluctantly answered. We left at 10.40pm. The front door was locked.

What does one do when staff, facility manager and support staff behave thus? Is this in the best interests of the residents? What does it say about the priorities of care?

1/31

DAY 31

Today’s post will come in two installments, to give the reader sufficient time to digest this. There are no bounds to the absurdity of a human’s argument when they are aware that they are doing something deemed unacceptable by other humans.

I was uncomfortable today when we arrived. It was just after 2, which is usually when church service begins. Z had used X being late for church service as an accusation two days ago, and I feared if we were late again, he would accuse us of disrupting the service. Then I realised how ridiculous it was to be fearful of the accusations of a confused, aggressive old man, a realisation backed up by today’s evidence. However, I can see how the older ladies residing at The Facility are frightened and intimidated by him.

We arrived at 2.05 to find Y closed into a completely dark room, in bed. Z was there, sitting beside her holding her hand, and as we came in, he gestured frantically at us to be quiet. Y was happy to see us (I noticed she looked less pale than yesterday, and her temperature felt normal) and talked to us, trying to get up herself as she did. Z was red-faced as he asked me, in English, ‘What did you do here yesterday night?’ I answered, ‘When we arrived, Y was unwell, I called an ambulance, the ambulance staff said there was nothing wrong with her, and Y was still unwell when we left last night.’ X told him the full story in his native language. Z was very angry, saying that Y had been a wreck all day today, exhausted and ‘unreachable’. He pointed out that he had dressed smartly and had planned to go to church service with Y, but she hadn’t been well enough to go and that was our fault.

Ah, there it is. This was going to be retold in some way whereby mistreatment of Y (in this case, forcing her to stay in bed all day, when she had indicated she wanted to get up, and keeping her in the dark at that) is blamed on our presence. Time and time again, X has been told (by staff, facility manager, Z, police and healthcare supervisory authorities) that all problems he sees are directly caused by him, that he is a threat in the staff’s work environment, to the extent of preventing them from being able to do their job, to care for the residents. Today I was glad that I could at least share some of that unjustified accusation, to reduce the burden on X. Again, how he has survived two years of this harassment astounds me.

Z then started a long discussion with X about the day we had taken Y out for pizza, telling us that pizza was a completely inappropriate meal for her. All this time, Y held X’s hand, smiled, and looked at X or I. She occasionally interjected, trying very hard to annunciate words. Each time, X and I listened, but Z continued talking over her. X explained to Y that we were talking about the day we went for pizza; she smiled, said ‘ooooh’ and made a thumbs-up with her left hand.

Is that not the clearest expression of opinion?

Y tried again to get up, and X told her she needed to press the button for assistance. She understood, and immediately began to cry and shake her head; she did not want the staff in her room. X explained that if she needed to get up, she had to ask the staff for assistance. She reluctantly assented to press it. As soon as she had, she threw off her blanket and tried to pull herself up, kicking her leg. Two staff members (7 and 3) came in (Y screamed and stiffened up when she saw them) and approached Z; they bent to hear him whisper to them.

The staff always behave thus, ignoring the resident and his/her clear wishes. In this case, approaching Z directly when Y has buzzed for assistance, emphasises this habit.

7 then went to get ear protectors, as 3 said quietly that she would ask the facility manager (15), and left the room. She returned a moment later, whispering to Z that 15 wanted to speak with him, so he left. Both staff clamped on their ear protectors. Y screamed, a look of pure terror on her face (I can’t describe this, it was horrific), and we were told to leave the room. We stood outside for a couple of minutes, Y screaming and crying, awful pained cries. The two staff exited, saying ‘It’s OK’, walking away quickly and not making eye contact. We ran into the room, where Y was sitting up at the table, crying and hitting the table hard. She looked traumatised. We hugged her and talked to her, and she calmed down, holding both of us tightly. X assured her we would report this and it would change, and gestured that I was helping with this. Y smiled and took my hand. 7 returned with afternoon tea for Y. When he set the tray down, Y pointed at the table in front of me, then in front of X, gesturing that we too needed tea, so I got up and made some. Y set our cups down for us, X on her right, I on her left.

Ever the hostess.

All this time she drifted between smiling and holding our hands, and sobbing desolately, hitting the table in frustration. Z was still out, talking to 15 in the office, so I blew a kiss at the surveillance camera for them to see. When I had made tea, Z returned. I offered him tea too, and he assented. I offered him my chair beside Y, as the table is crowded, and I could fit in a small space, but he refused. We sat together in silence, sipping tea. Z then turned to me to speak in English. Summary follows.

Z- You are writing a blog.

Me- Yes I am. Have you read it?

Z- No. It is important to see all opinions when writing.

Me- Yes, it is very important. I am writing exactly what I see, nothing more or less.

Z- Now, X has lots of girls, and he makes them think the same way as him. I don’t know, maybe you are one of them.

Me- I think for myself. (Z laughed.)

Z- Are you sure? Are you sure your thoughts are your own?

Me- Are you sure your thoughts are your own? Is there a girl influencing your thoughts?

I was implying that I was aware of the controlling influence X’s sister has on Z’s decisions regarding Y’s care.

Z- One girl told me that the (national) healthcare system is bad and the system in the US is good.

Me- Are you talking about this place or about the healthcare system in general? (no answer) I have only heard good things about the (national) system, and when I am here I am writing exactly what I see.

Z- I will show you that the (national) healthcare system is very good. I had rheumatism, very bad, I nearly was in a wheelchair (gesturing at Y), but then I was sent to a rheumatism treatment facility, where I stayed for 5 weeks, and I was completely better. That shows that it was a good healthcare system.

I thought it sick that he had gestured to Y thus, deriding her.

Me-  Yes, that is excellent. So you had a specific illness, rheumatism, and you were given treatment for that problem. That sounds perfect. Y has had a stroke, but she has not been treated for her stroke.

Z- The second example, I am diabetic. (We worked out that he was a Type 2 diabetic.) When I went to the doctor, they offered me a new treatment on the market. I said I would try it, and it has worked, and I am better.

M- Excellent! You look well. So you had diabetes, and you received treatment for diabetes. Y had a stroke but hasn’t been treated for stroke. Why?

Z reached out and began tapping my arm as he spoke. I asked him not to touch me. He then laughed and made a mocking gesture to move as far from me as he could, saying ‘sorry, sorry’. I said ‘thank you, that counts as physical assault. Now, continue.’

Z- I had a heart attack while I was out in the mountains. I was able to get home (I interjected ‘Oh that’s good, you were able to get home by yourself’, implying that Y didn’t have this chance), and the ambulance took me to (the nearest large hospital). They did all the tests and sent me straight away as an emergency to (a central hospital) for surgery. That was very good health care.

M- Yes it is, excellent. And you are lucky to be strong to survive all these things. Y has had a stroke but isn’t getting treatment for that- why?

Z- My prostate! I was treated immediately and very well. Also, I went to Peru, ate something bad, and was sick. They took me to hospital immediately and overnight I was better. I thought the Peruvian healthcare was very good. I saw millions of people starving in ghettoes, and for them, Peruvian healthcare is not very good. (He shook his finger at me.) So you cannot just look at one example.

M- You are right. It sounds from your experiences that (national) healthcare is very good. I have very little experience of it. That is why I can only write exactly what I see here.

At this point, Y began to cry- she had been gesturing to X to stand up for her against Z. I didn’t want to distress her further so I didn’t continue asking why she was denied appropriate care when Z was happy to take it for himself. We changed subject. Z mentioned in passing that he was aware I had reported Y’s case to the national healthcare supervisory ombudsman.

So this information, a confidential report, had been leaked directly to Z and to The Facility. That explains the animosity towards me, when the staff had been relatively disinterested in me for the first few weeks. It also explains why X and I are being harassed, and the other residents aggravated, for daring to suggest that this place is not the picture-perfect care home it tells the authorities it is.

We sat in silence some more before asking Y if she would like to go out for some fresh air. She really struggled with decisions today, but she seemed to indicate assent by bringing her left hand down to the edge of the table to push herself away, as she did yesterday, but then forgot what she was doing, or couldn’t work it out. She got upset and frustrated. Once she was calm, we said we would help her. We asked again if she would like fresh air, and she brought her hand to the edge of the table again, so we helped her push her chair away. Z prepared to leave, as did Y, putting on a warm coat, scarf and gloves. When Z was ready, he waved and walked towards the door. X asked if he would walk with us, as Y cried out and reached for him.

It is awe-inspiring that Y still loves her husband so much, despite being fully aware that he has denied her the only chance she has at any quality of life. Oh, for such dedication to be reciprocated.

Z stayed until Y was ready to go out. I showed her two blankets and asked which she would like around her knees. She shook her head slowly and dropped her head to her chest, which usually means she doesn’t want to make a decision. We chose one.

X noticed the lift used to carry her from chair to bed was positioned very awkwardly around her, and would be dangerous if she were in the lift. He and Z raised Y, one on each side, while I adjusted it under her. She was distressed and crying, because she hadn’t understood what was going on. X apologised and explained again, but when she kept crying he said OK and stopped, gesturing to Z, who was still trying to raise Y and rearrange the lift himself.

The door opened while Y was getting her shoes on. S was there, looking very upset. Y was distressed and pointed at her, shouting, so I quickly stepped outside the room to S, leaving X and Z to finish helping Y. S was crying and explaining that she thought she was going to have visitors who would take her home today, but they hadn’t come, and when she rang them, they said they were too busy.

How often does this happen? How many families have installed an elderly relative in a care home to relieve them of the pressure of taking care of them, allowing them more time to themselves, to forget the individual they have shut away?

I listened to her and hugged her. She felt and looked very weak, so I helped her into a chair by Y’s door. X, Y and Z emerged and began to walk out of the building. I said I would sit with S for a minute and catch up. I knelt on the floor holding her hand, then (when she had stopped crying) explained I had to go help Y, took my jacket and followed. On my way I greeted T- he touched my face and smiled.

We walked Z home. It was cold and windy, and Y was wrapped warmly. She was a little upset when he said goodbye and went indoors, but when he was out of sight, she was fine, and took X’s hand to continue with our walk. We asked her which way she wanted to go, and again she was distressed at decision-making, so we hugged her and chose a path, which we told her before we started. She was very upset today- I wasn’t surprised, since she had been closed into a dark room all day, and she is afraid of the dark. The fresh air brought some colour to her face, and she enjoyed saying hello to the chef at the pizzeria, and talking to a local friend as he drove past. We returned to The Facility (Y cried and screamed all the way up the driveway) about 4.35pm.

There has been a trolley of firewood parked in front of the assisted door opening button for wheelchair access for some days, blocking it from use.

Y was upset so I opened the doors for her instead of asking her too: she didn’t seem in the mood. We went into Y’s room, where she took off her outdoor layers, and sat at the table. I went back outside the room because S was sitting where I had left her, very shaky and upset. I knelt beside her and held her hands, and we talked a little. She kept leaning forward and whispering in my ear, though I couldn’t understand what she was saying- it seemed very important to her. She looked questioningly at the staff who kept drifting past the kitchen window looking at us. I told S that they were watching me and she nodded. I kept the door to Y’s room open. X played guitar and sang some songs for Y. S and I listened and joined in too. S began to seem calm and smiled. We were both surprised when 5pm came and went, and dinner had not begun. The other residents were looking confused too. T looked particularly lost, so I invited him over to be with S and I, which he gladly did.

At 5.15, FIVE staff members suddenly gathered around us in a circle. One placed gently restraining hands on T’s walker, one on S’s arms, and they told me brusquely in The Language Of The Country to go into Y’s room now. I said, ‘But it’s dinnertime now, X and Y are on their way out here so we’ll be going anyway.’ They insisted loudly and aggressively that I go into the room. I tried to get up, but S clung to me and begged me not to go. Two staff members held her back as I kissed her, said I’d be back soon, and went into the room. One of the staff members, 2, had gone in to take Y out of her own room- Y’s wheelchair was pulled away quickly.

No explanation to Y. She was not asked. She was dragged. What kind of treatment is this? And yet the staff claim we are actively preventing them from being able to care for the residents.

X told me when they left that 2 had said that if we wanted to stay, Y could eat in her room instead, with us, which Y agreed to. She had then been quickly taken away, and we were told to leave.

We documented her medication on her wall chart. We saw the toilet hadn’t been used, the toilet paper was untouched, and a used diaper was in the trash; Z had said when we arrived that Y had been assisted to use the toilet earlier, but it seemed that was untrue. We left at 5.40, waving through the window to Y and S as we left.

Lies, intimidation, absurdly circuitous argument. Reporting exactly what I see is much easier.

…..

Part the Second…

We returned at 8pm. Everyone was having supper in the communal room except Y and S. I found S walking around anxiously, looking for her walker, finding it, leaving it somewhere else, and asking over and over again that we don’t leave without saying goodbye (she was confused and distressed). Y’s door was closed but not locked, and we could hear her scream, so we went straight in. We saw two staff members at the table, one either side of Y’s wheelchair. They immediately bustled us out of the room, saying Y was having her medication and would be put to bed now, and that we couldn’t be in there. X called out to Y that we were outside and we would be with her soon; she heard and cheered up.

We sat outside the door, wondering that if we weren’t allowed in communal space or in Y’s room, where exactly we were supposed to be.

We spoke to V and S. R greeted and complimented me in English. I thanked him and kissed his cheek; he looked very happy.

Y was screaming all the time. The staff left the room 20 minutes later. They didn’t look at or speak to us when they left, but began to lead S and V away from us, then finally told us we were supposed to be in Y’s room.

There is a lack of courtesy both to us and more importantly, to the other residents, who are trafficked around to suit the staff’s intentions. Surely this is the reverse of what should happen?

We thanked them and went in. The room was very dark, and Y was crying in bed. She had a bruise on the right of her chin, a bright red mark from her mouth down to her pulse point on the right of her neck, and a small scratch in the skin just below this mark. I can’t be sure the bruise wasn’t there already, as it was bright purple, but the red mark and scratch were definitely new since earlier today. She clung to X for a long time, screaming and crying. I asked her if I could adjust the lamp to the lighting she likes, and she assented. She hesitantly gave me a hug, as X reminded her who I was. She was still quite present but very distressed after the staff had been in. X said he needed to go to the bathroom to document her medication, and suggested that she hold my hand instead of his while he took off his jacket first. She did, hesitantly at first, as though she were confused, but soon we were talking at length, playing and giggling together. We continued for about 20 minutes. When X returned, he pulled up a chair and joined us; Y kept hold of my hands in hers.

I saw she had yogurt around her lips and on her nose, so her face hadn’t been washed or her teeth brushed as she was put to bed.

We talked a little, then X picked up the guitar and we sang a few songs together. Y calmed down a lot over two hours, and spent a lot of that time laughing, talking and singing. She fell asleep peacefully; she looked comfortable, her breathing was steady, and she didn’t cry or indicate nightmares or discomfort. The night shift staff member, a new girl we saw for the first time last night, came in to check on Y.

This was unusual- unlike other staff, she was active on her shift, checking each resident.

She told us she had checked up on Y last night after we had gone, and that ‘she had a good night’s sleep’.

This seems to contradict Z’s claim that Y had been a distraught exhausted wreck when he arrived.

She said Y looked peaceful in her sleep, and hoped she would have another good night.

It was quite nice to leave tonight knowing that there was someone there who would check on Y, and knowing that Y was calmer in her sleep tonight than usual, after some quality time together.

We left at 10.15pm. The front door was locked.

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DAY 32

A brief and uneventful visit today. I observed the attitude of the staff, and their hints of intimidation.

We arrived at 8.10pm. The front door of the building was locked. We rang for someone to open it, and after 5 or 6 minutes a member of staff appeared. When we got to Y’s room, 9 appeared from the room next door and said ‘She’s asleep’.

Does he mean we should not go in?

Y’s door was closed. We opened it as quietly as possible. When we went in, the room was completely dark, and Y was awake, moaning and sobbing a little. She greeted X, clinging to him, her movements slow, and her speech vague. She didn’t want to let him go. She was wary of me, so I said hi quietly, and then stayed at the doorway, where I wouldn’t disturb her. X checked her wallchart. We noticed the roll of toilet paper had mysteriously disappeared again, and was not in the room anywhere. I saw on the wall chart that Y had apparently had physical therapy for her rehab on the past three mornings, and that she had used the toilet this morning. (Yesterday, Z claimed she had been assisted to the bathroom, but this was not marked on the wallchart.) We said goodnight, and Y waved as we left, at 8.50pm.

Outside the room we saw S talking to a member of staff from her room, saying again that she wasn’t able to open her door herself and that frightened her. The girl asked if she wanted to come out or go to bed, and S replied that she wanted to go to bed herself when she wanted, without any help, and walked out along the corridor. The member of staff tutted and left.

I thought S’s request quite reasonable. Why deny her a little independence in a task she is very capable of performing?

As we went out, I noticed all the rooms were closed and all but two were locked. Aside from the two staff members hovering in the corridor watching us, 9 was sitting in the office, his feet up. I wondered why all the staff had nothing to do on a night shift, except put everyone to bed before 9 and lock them in.

The front door of the building was locked when we approached it again.

1/33

DAY 33

Interesting things I learned today:

1. It’s illegal for us to be asked to leave the room when the staff work with Y. In fact, if it is Y’s wish, we are required to help, to work with the staff. We can move her, help her to the bathroom, and help her up, legally, if she wants us to.

2. It’s Y’s room so she can ask for staff to leave.

3. It is likely that the staff will claim we are lying and moving Y against her wishes unless we have evidence to the contrary.

4. According to their own rule that we must stay in Y’s room if we are visiting, and are not allowed in communal space, if they tell us to leave the room while they move Y, we can refuse.

We arrived at 6.45pm. We were stopped outside Y’s room, the door blocked by two staff members who said Y was being put to bed now, she was tired. We could see through the doorway that Y was already in bed.

If Y was already in bed, how could it be claimed that now she was going to be put to bed? Why did the staff lie? What are they hiding?

We were refused entry so we sat in the communal room. T, Q, R, and, later, S were all served supper there, each separately, one after the other, so they weren’t really eating together.

It was interesting to see that earlier today I had posted about Q, whose mobility is extremely limited; she was found slumped over at a painful angle in her chair by X and I, and, in the absence of any staff, we helped prop her upright with cushions, for which she was grateful. This evening, Q was comfortably propped up with cushions in her chair, which she had never been as long as I have been here.

At 7.10pm, the two staff left Y’s room, carrying her dinner tray.

So she had not been let out of her room for dinner, and was not going to get any supper.

We had heard her screaming and crying continually from 6.45 until 7.05. Instead of telling us that we could go in to see her now, three of the staff crowded round us and said we were not allowed to be in the communal space any more. They said of Y, ‘she’s asleep,’ so we went in very quietly, at 7.10. Y was in fact asleep, unlike last night (recall, staff said she was asleep and she was not). She was deeply asleep, not even murmuring when X kissed her hello.

What had happened within 5 minutes, that she changed from screaming to unwakeable?

We documented her medication, and I saw the floor in her room was filthy with food, dirt and unidentifiable pieces on the floor, as well as stains of unwashed spills. We left the room, wishing Y goodnight.

I felt guilty tonight for letting Y down by not being able to spend more of the day with her. Were we there more, perhaps she would not be left in bed, alone, in the dark, all day. Then I thought, what kind of a place is this, where I feel I need to protect Y from the people who she pays extortionately well to attend to her, but who instead lock her in, isolate her, and treat her cruelly?

V approached us, leaving her supper. She smiled, greeted us warmly and held my hand. She said she wanted to spend some time with us. We talked briefly, but two staff members were hovering glaring at us and reminding us we were not allowed to be here, so V said she would walk us out to the door; she had previously been forbidden to invite us into her own private apartment to talk.

This was a very brave and selfless gesture- all three of us know she will be punished for supporting us and so indirectly standing up for Y and objecting to her mistreatment. It is also unreasonable that staff dictate to her that she cannot invite her friends into her own private space. It would not take very much effort to make the atmosphere here welcoming, but the staff are purposely making it unwelcoming, as is well-known in the village.

She spoke to us in the entrance hall, telling us the staff were mistreating her. We can see from other residents that they are being mistreated more since we are here- T looks thinner and ill, for example, and S is much more confused, grey-faced and sick-looking than she was a couple of weeks ago. I feel guilty for this, but X says that they have done this before at The Facility: the pattern goes that if X does something, in some way stands up to the injustice of Y’s mistreatment (this time by taking her out for dinner), Y gets the solitary treatment, locked in her room for days on end, and the other residents suffer too, though we have no concrete evidence bar them looking ill, appearing more drugged (S), and a fearful anxious silence among them. Then the pattern goes that the staff stage a ‘meeting’, falsely accuse X of something absurd, and say that it is his fault all the residents including Y are suffering. They create some false evidence, and Z and staff members testify to whatever it is. We know there is a ‘care planning meeting’ scheduled in two days’ time, and we expect this will be the occasion they choose to unleash their newest accusation.

1/34

DAY 34

I know several readers are finding it difficult to keep track of who is who. Until I can guarantee the legality of not being anonymous, and the security of all parties involved, I will keep writing thus, however. Here is a reminder of who is who:

Y is most important. She is the 92-year-old stroke victim. X is her son, my friend, who I accompany when he visits her every day. Z is X’s father, Y’s husband, and also her legal spokesperson.

Other residents are P-W. Staff are numbered 1-15. It doesn’t matter much if you get these mixed up, it’s mostly for my own records. People who stand up for Y, objecting to how she is treated, include V and S.

I hope this helps.

We arrived at 6.45. We met V sitting in the corridor. She greeted us both warmly. X asked if she was OK, she said yes, but staff often locked her out of her own private room, so she was keeping guard to make sure they didn’t.

Y was in her wheelchair in the dining room, alone, positioned facing out a barricaded door into the pitch-darkness. I noticed that the TV controls had been removed. We greeted her, but she was not very alert today. She was confused, slow-moving and vague, even in response to X, though she was definitely happy to see us. After about ten minutes she began to brighten up, at which point two staff told us we had to go into her room now, we weren’t allowed out in this communal room. We asked why, they said it was 15’s rule, they weren’t responsible for it. We asked weren’t they responsible for Y, they said no, 15 (the facility manager) is, we aren’t responsible for Y or any of the residents. X asked weren’t they responsible for reporting mistreatment here, as this is their legal duty, but they said they had reported him, personally, for two years, because he was the only problem they could see.

Let me reiterate: in this country it is a healthcare worker’s legal obligation to report to the inspectorate if they make a mistake or see any mistreatment, deliberate or accidental, at work. By denying that this is going on, all staff members here are breaking the law. When I can guarantee legality of giving more information in this blog, I will update this post with a link to the English translation of this Act.

We went to Y’s room. As we walked there, I saw that the other residents were being prevented from being in contact with us. To keep them out of the dining room until we were gone, the staff were seating them in the corridor and serving them supper there. I took a couple of pictures, though staff objected and hid from the camera.

The residents, all of whom enjoy and look forward to our company as the only regular visitors, are unhappy at being cut off from us. The Facility are using this isolation to retaliate against my reports to authorities; both we (including Y) and the other residents are made to suffer.

We closed the door of Y’s room behind us. At the table, X answered a phone call, and wrote himself notes as he talked. Y and I chatted together, laughed a lot and sang; Y then read through X’s notes, pointing at words and saying them slowly so I could understand (despite her speech impairment). She tried to fix a piece of fabric on a floral display that had come loose; she held it in place and I pegged it down with a bobby pin from my hair. Y laughed and gave me a high-five. X and I could hear muffled screams from some room nearby, but couldn’t work out who. I think it sounded like R but can’t be sure.

We played Ludo together. Y set up the board, with beautifully precise finger control. She played well, absorbed in the game, and she won. Her moving her counter along the spaces, simultaneously picking up the opponent’s counter which she had captured, and placing it back in their home base, laughing as she did, shows impressive fine motor control.

It doesn’t take very much for Y to feel like this is her home. People around her who care about her and listen to what she has to say, respond to what she wants, and interact with her in different ways: surely every person should be entitled to this in their life? Surely this should be a priority in a facility like this?

As we talked some more, T came into the room. He was confused because all the lights in the communal room had been put out and the staff were nowhere to be seen. Y didn’t really want him in her room, so X stayed with her and played guitar while I accompanied T to his room. As we don’t speak the same language, X translated to T that I would help him; T replied that I didn’t look like I was going to kill him, so that would be fine.

While this was intended as a joke, there was an underlying element of fear in his voice. It worries me that residents here cannot trust the staff around them.

He took my arm in his as we walked out of the room, along the corridor, and towards his room. He hesitated, read his own name plaque on the door a couple of times aloud, and peered into his room- it was dark too. I asked if he would like to sit in a chair in the still-illuminated corridor, where S was, so he would have light and company, but he didn’t want to sit in a corridor. (Swas perched on her walker by the kitchen door, huddled and distressed, glancing at the dark room.) I walked him into his room, where he pointed at some photos of his grandchildren, and gestured for me to sit down. I was anxious that he would be punished by staff if they saw me there, so I apologised, excused myself, and returned to Y’s room.

We talked together some more, X filling Y in on what we had been doing today, and what stage my various reports had reached. She was interested and very happy that we were making progress, gesturing by waving her finger in the air and hitting her fist on the table, with triumphant sounds and a big smile.

I was feeling very guilty for leaving T and S behind, but this made me feel motivated again.

I excused myself to go to the bathroom. On my way, two staff members followed me down the corridor. At the door out into the entrance hall, where the visitors’ toilet is, there was a crowd gathered, making a lot of noise. I couldn’t follow what had happened, but when I arrived, S was trying to walk out of the building, saying she wanted to go home, P was trying to tell her she couldn’t, it was snowing outside, and 3 staff were all talking at the same time in different tones (calming, irritated, forceful), trying to convince her to go back to her room. I slipped past, and on my return, they were still there. One of the staff said in English ‘Just push past her,’ speaking of S, but I refused. S saw me, and began to walk out of my way. I was followed by one staff member all the way to Y’s room.

It had reached 9.30, and no staff had brought Y supper (scheduled for 7.30) or checked on her. We pointed this out to Y and she indicated that she would make us supper. Together with X,  she did so. She took milk from the fridge. She was distressed that it read ‘best before (yesterday’s date)’, and wanted me to throw it away, but we opened, smelled and tasted it, and she agreed it was fine.

So she read the date, knew it was yesterday’s, and made a judgement based on that. No mental capacity? Unable to read? Ridiculous claims by Z and X’s sister yet again disproved.

She filled three cups, passed the cups to X to put in the microwave, then took spreads out of the fridge. Y also saw a blox of chocolates in her fridge; she opened it, passed a chocolate behind her to me, then one to X, then took one herself.

Ever the hostess.

She carried the spreads over to the table, and I brought bread. She checked all three of us had plate, cutlery, bread and a cup before starting. She made herself a sandwich and ate. She put chocolate powder into the hot milk and stirred it. She was clearly happy to be eating in company, constantly checking our cups and plates, smiling, laughing and pointing to each of us in turn and drawing a circle in the air. She ate two sandwiches and drank all her hot chocolate.

At 10, 9 (staff) knocked on the door and politely told us that the alarm buttons were not working, and to tell a member of staff when Y wanted to be put to bed. We were all very pleasantly surprised by his manner.

About 10.15, Y began to look tired. X suggested that he and I clear up; Y said absolutely not, with sound and gesture. She started stacking the dishes and pushed her wheelchair away from the table. She and X cleared up, then he washed the dishes, and she dried them and put them away, smiling all the while. When they had finished, she looked tired. X asked if she wanted to go to bed, and she nodded. He said then that we would go and fetch staff, and she screamed and cried.

This happened again and again for the next hour. As Y got more tired, she was also more terrified at the idea of the staff coming in. We couldn’t work out anything else we could do. X even said he would try to be in the room while the staff put her to bed (legally, Y’s choice), but she was still extremely distressed. She grew wary of me as her fear escalated, so I stayed back out of her way. At 11.15 she was so tired she was dropping off in her wheelchair, so X and I asked staff to come and assist her to bed. The staff member we spoke to walked away as we were talking, closing a door behind her, between us. She opened it again a few moments later and said staff were all busy, Y would have to wait.

How are they all busy when three staff are working a night shift normally only done by one or two staff?

When we returned, I heard the surveillance camera in Y’s room making unusual noises, clicks and beeps I hadn’t heard before.

We went back to Y, who looked devastated that we had called staff. We both felt terribly guilty. X asked if she wanted to brush her teeth, and she assented.  She closed the bathroom door behind her and X, pulled herself in towards the sink, turned on the tap and picked up her toothbrush. She was very upset to see it was filthy, and tried to clean it. The glass was filthy too, so X also tried to clean both. It took a long time to calm her down again after this, but when she did, she brushed her teeth herself, and did it very well. As she emerged from the bathroom, two staff arrived to put her to bed; it was 11.35. She screamed when she saw them, and did not stop. We left, and she cried behind us.

We sat in the (dark) communal room waiting. We saw the ambulance pull up, and two crew enter the building. They came into the office, round the corner from us, so we could hear X’s name mentioned, and that ‘he had done something’ before the door closed.

As I said before, the ambulance service in the village are not so much paramedics, as they are personal security staff for their boss, the facility manager.

We heard Y scream and cry, more distressed than usual. At 11.45, one staff member emerged, then returned with yogurt, to give Y her medication (so there was little point in her having brushed her teeth). At 11.50, the two staff emerged and said ‘OK, go in’. We entered. Y had pulled the quilt over her face and was sobbing quietly. She shrieked and kept her face hidden when X greeted her; she was upset at being betrayed. We both felt terrible. X documented her medication, and we both noticed a strong smell of fresh urine from a diaper in the trash (Y had not been allowed to use the toilet again). We also saw one set of ear protectors had been moved from the shelf outside into the bathroom, so presumably they had been used. We left just after midnight. The front door was locked, and the ambulance crew were nowhere to be seen, though the van was there. We were watched as we walked to the car, and could see staff member 11 call someone on her mobile as we left the building, and go into Y’s room.

I feel sickened that Y should be so afraid of the staff who are supposed to care for her.

We also guessed that we would be blamed for ‘keeping her up all night’, and that retaliations were imminent. This was proved correct, as you will see.

1/35

DAY 35

I will write today’s post in a couple of installments; this evening part two will follow.

This day was a long and very distressing day for X and I- I can’t imagine what it was like for Y.

We arrived at 11, for Y’s care planning meeting; 15, the facility manager, arrived at the same time. The corridors of the facility were dark, lights switched off. In the office, Z and the PT were sitting at the table. 15 barricaded the door and told me in The Language Of The Country that I was not allowed in. I had checked earlier that morning that legally, X is entitled to have a silent witness present in the meeting for support, even if they are not part of the family. 15 said no, I said that was illegal: she placed her arm across the doorway close to my neck, smiled, and repeated I was not allowed in.

This is attempted intimidation, on top of the already illegal action.

She then turned to X and said that Y had requested that I not be in the meeting (most likely a lie, as will be evidenced later). We were surprised and offered to go and ask Y; 15 refused and was angry. I said to X that I would go outside and ring the person in the police with whom I had contact while reporting the case, to verify the legalities.

At any time during the next hour, I was watched from the entrance hall and communal rooms on one or other side of the drive by at least two, sometimes four, staff members at a time. 

I went outside. I rang my contact in the municipal police: she was on lunch-break. I rang her office; her colleagues couldn’t comment on a case they were not handling. I rang the local police, who refused to comment on the illegal action I was reporting.

This was interesting, considering I emailed the mayor, their employer, one day previously, questioning why he had made threats against X’s and Y’s personal security if the case was reported to any authority.

The national emergency phone-line redirected me to the national non-emergency operators, who said that they could not comment, as I could only ask police in the district/municipality concerned.

This is a very complicated dysfunctional system.

I tried the municipal police contact again, with no success. I gave up, and went indoors to sit in the entrance hall until the meeting was over. Staff member 7 was there, pretending he wasn’t watching me; I said good morning, and he looked away without answering, though I was sitting opposite him and nobody else was there. Several other staff members not-so-nonchalantly passed through, and I greeted them all cheerfully too.

Finally, at noon, 15 and Z came out. I greeted them both. Z left; 15 stood in front of the door as I approached to go in. She blocked the way as she said ‘Y is sleeping’ (lie, as shown later). I replied that I would go to X; she continued to block my way and said ‘X is coming’ (lie, as shown later). I pressed the unlock button, then quickly passed her to push the door open, saying ‘No, I’ll go to him, we are visiting Y’. Once I had opened the door, 15 stood in the open space blocking my way. I gestured ‘after you’, which she reluctantly responded to, and pretended she needed to go into the office. I was followed by two members of staff all the way to Y’s room.

I greeted S, V and W, who were sitting in the corridor, as I passed, blowing them all kisses; I usually kiss them hello, but they were hemmed in either side by staff.

There seemed to be unusually many staff members here today- according to the schedule on the wall, there were seven, not the usual four or five for this early shift.

P was practising harmonica in his room, and it was lovely to have some sign of life in the place. I knocked Y’s door, and went in, saying ‘Hello X, hello Y’; there were also two members of staff there. Y was awake, in bed, though very out-of-it, white, cold, clammy, and her eyes showed sedation. She looked awful since we had last seen her. One staff member, 2, was leaning over her, stroking her forehead and saying ‘Yes, you’re too tired for lunch, aren’t you’ before leaving.

X then told me that straight after the meeting, 15 had told all the staff that Y was too tired for lunch today (though she had not seen Y today). Z had left straight after the meeting without visiting his wife either. Strange, given the meeting was supposed to be about planning Y’s care.

We sat with Y for a while. She was upset, clinging to X, moving and speaking slowly and vaguely. We talked and she began to brighten, but indicated she definitely did not want us to leave. After an hour, she gestured that she wanted to get up, so X helped her press the assistance button by holding the wristband still for her. While we waited, we watched some old movie clips she likes; she adjusted the back support on her bed herself, X holding the controls up for her.

After ten minutes (it was 1.25, and her scheduled lunchtime is 12), X went to ask for staff assistance, as Y was clearly hungry and impatient to get up. Two staff members came in; Y screamed and looked panicked when she saw them. We promised she was getting up for lunch, that we would see her in a minute, and we left. She screamed for seven minutes before the door opened; X and I sat in chairs outside her room.

A mentally stable person screams and panics when she sees the staff. This is evidence enough of their capability as care-givers. Why is this whole case even happening when that is so obvious?

She was brought to the table (everyone else had left), a bib pulled around her neck, and a bowl of soup placed in front of her. X went out to collect some food for us too, so we could maximise time with Y. He asked her if I could sit with her, that he would be back in five minutes; she nodded. When X left, the four members of staff who were sitting in the same room watching me (was there nothing else for them to do?) started, and 2 came over to say that if I were not going with X, I would have to sit in Y’s room until Y had finished her lunch. I wasn’t sure what to do, so I ran after X to ask him. He came back in, and we talked to Y and 2 again. The only option for either of us to be with Y was if she had lunch in her room, alone, behind a closed door. We accepted this, though Y was a little disgruntled at all the fuss when she was hungry. We finally settled, she and I, at the table in her room.

There were pieces of bread from Y’s breakfast on the table. They hadn’t been there when we had supper with her last night. Y had evidently had breakfast alone in her room too.

X left again; Y was a little confused that it was just me there and not X too, but refocused on her food, and seemed unbothered by it then. I moved my phone on the table; Y gestured that she wanted me to take it off the table, so I did. We looked out the window- it was a beautiful sunny day- and both of us smiled when the sun hit our faces. Y sang a song between mouthfuls; I listened and admired it. Mostly we sat in silence, Y eating. X returned, and Y was delighted that we were eating together. She shared some of both our meals.

I had agreed to come out and ask for Y’s dessert when she finished her soup; when I did, the four staff were still sitting outside in the communal room, watching Y’s door and doing nothing. 2 came in to ask Y which jam she wanted with her pancakes; Y closed her eyes and dropped her head, refusing to communicate, so 2 spoke to X instead. X said that Y had expressed no preference. 2 left and returned with a plate of chopped-up pancakes, jam and cream.

As usual, there was a plastic attachment around the plate, designed to ‘help’ a less-mobile patient, but actually not providing much help, but making the person feel ‘disabled’ in some way.

The ‘food’ looked awful. Y shrieked when she saw it, and gestured that she would prefer our food. 2 had to agree it looked better, but left the dessert on the worktop as she left.

While 2’s interaction today is civil, her manner is patronising and dictatorial towards Y.

1/35i

DAY 35 (i)

This is the second part of today’s journal. We begin where I left off in the last post, at lunchtime.

Once Y had eaten her fill, we talked for a few minutes before X suggested some fresh air and a walk outside. Y nodded, and began clearing the table. Staff member 2 came in to take away our food containers (or check up on us again unnecessarily?). We got ready to go out:Y was slow and confused putting on her coat.

She was lashing out at us both a lot today. This happens when she is pent-up and frustrated, usually from having been forced to stay in bed for long periods; we guessed she hadn’t been up for much of the day before we arrived.

We left; the four staff members watching Y’s door started when we came out of the room.

Y had forgotten a scarf, so I ran back in to get one for her- I was watched by staff, who were silent to my greetings, to, in and from her room. S was sitting by Y’s door, waiting for me. I quickly kissed her and said I’d be back soon. Two staff members moved towards me as I did so.

I rejoined X and Y outside. We walked to the store to see our friend. He hugged Y in greeting, and she was happy. We walked to the hotel and round the campsite, admiring the lake in the sun, and pausing for Y to feel the sun on her face. Today, X pulled the wheelchair along from the side, and I walked on the other side, so Y could feel like we were walking three abreast, not behind her. Two locals passed and greeted X and I but not Y.

Do people in wheelchairs often get overlooked, ignored, eye contact avoided? Why? Are they not people? Do others feel awkward, embarrassed, not-sure-where-to-look around wheelchair-bound people?

We returned to the store, where our friend invited us for coffee. His two young sons were there, which delighted Y.

I was quite upset at this stage, following what X had told me about the ‘care planning’ meeting. However, I reflected that this village functions as a fake democracy, controlled by the corrupt few. People in the village are aware of the mistreatment that goes on at The Facility, many have lost elderly friends and family members there, and they felt it was wrong, yet they could not be involved in challenging The Facility, because they know they may lose their jobs or some aspect of their personal security. ‘That’s how it is here,’ locals say.

When we told Y it was time to go back for dinner, she shrieked. She cried all the way back, and let go of X’s hand, refusing to pull herself along, on the last stretch of the drive. We felt very guilty as we brought her to her room; she was too distressed to open the first two doors, but opened the third herself. We helped her out of her coat, and to the dining table (now she held X’s hand again and pulled herself along). When she realised we could not stay to eat with her again, she screamed and cried. We went to her room, documented her medication, and left; as we passed the window, Y was slumped, her eyes almost closed, her chin dropped to her chest. This reminded me of her posture when she ‘shut down’ and wouldn’t communicate with staff member 2 earlier.

We returned at 8. Again, strangely, the facility, manager, staff member 15 arrived at the same time. It was good to hear P still playing harmonica in his room. Y was in bed, in the dark, and almost asleep. She saw us, but wasn’t entirely mentally present. She held tightly to X’s shirt and wouldn’t let go, so we sat with her, in silence. The surveillance camera was making unusual noises again. We wished Y goodnight and left at 9.10.

How would it feel, to live in fear like this?

1/36

DAY 36

This is upsetting. I cried for a long time when I got home.

We arrived at 7.25pm. Y was in a pitch-dark room, in bed, asleep, a CD playing loudly in her room. The CD was on track 10, so must have been playing for approximately half an hour. It was so loud I was surprised she could sleep, before I remembered she is sedated; there is no chance staff could hear her cry out over the sound. I noticed that the door was locked, though staff had left it ajar in anticipation of us arriving; when we closed it behind us, it was completely locked. We adjusted the lighting, and went to document her medication on her wall chart. In the bathroom, one set of ear protectors lay on the shelf. A used diaper and a disposable bed-sheet smelling very strongly of urine lay in the trash, and the commode was dusty; Y had not been taken to the toilet today. We deduced that she must have been put to bed after dinner, if she had urinated in bed since. X’s guitar has been moved twice since he last played here, first behind a chair by the window, where Y couldn’t see it, and tonight to the small space by the door, under the coat hooks.

It’s just a small detail, but like leaving the door locked and ajar, we are being subtly threatened.

We left Y at 8.25. V walked us to the door, talking, holding my hands; she clearly wanted company. At the door, S was sitting, glancing around anxiously, hunched over, fidgeting and crying. I knelt beside her and held her hands. She was extremely afraid, I could see, and she talked for a few minutes- all incomprehensible nonsense. The only thing we could make out was that she was sure the staff were going to shoot her tonight. We tried to reassure her that she would be OK tonight, and we would see her tomorrow, but she clung to my hand and began to cry. I kissed and hugged her, and we left. The front door was locked again.

As we walked to the car, we discussed how very rapidly S’s health is going downhill. She has, over just the past couple of weeks, suddenly become very mentally unstable and confused. She looks grey, thinner than ever, frail, shaky, and her eyes are red and panicked. I can see that she is dying and will not last much longer here. I can also that something un-natural is happening to her, i.e. she is not just reaching her natural end-of-life, but is being pushed there. Thirdly, I know that this is my punishment for criticising this place. This, X explains, has happened before. Someone reports, then sees a resident suddenly get much worse very quickly, the resident dies, and the reporter feels so guilty that they leave and shut up. While there is no worse feeling than knowing it is because I am here and I befriended her that S is being driven crazy and killed, the only worse thing I can do is to stop reporting; this must be stopped and must not happen anywhere, ever again.

1/37

DAY 37

Again, this was a long day, so I’ll post part of today’s journal now, and the rest this evening.

We arrived at 1.55pm; it was a Sunday. Y was in bed, and Z was standing by the table. We asked them both why Y wasn’t up to go to the church service. Z answered that she was too tired. Meanwhile, Y greeted X. She was drugged and confused; she clung to him for some time. Z then said there was no church service today, it was being held in another town in the parish.

Why change explanation?

Y clung to X still. She slowly brightened up and woke from her confusion, and she greeted me too. We asked if she wanted to get up. She said yes, and flung her arm round X’s neck, trying to pull herself up. We encouraged her to press the button on her wristband for assistance, which she did. Ten minutes later, staff members 5 and 8 arrived, ear protectors around their necks already. Y began to scream when she saw them. X told Y, correctly, that the law says that he or Z could stay in the room and help move her, if she wanted, and she was happy. X asked Z if he wanted to stay. He refused, put on his coat and left (I mean he left the building- he went home).

Is this an appropriate response from a guardian to his trustee, when she is afraid and he could offer support?

Y indicated she wanted X to stay, so X told 5 he would. She said no (as I said, this is illegal). X suggested she listen to Y, who wanted him to be there. She said she was listening. X asked how she could listen when she wore ear protectors. She said, ‘I can hear fine’, clamped on her ear protectors, smiled sarcastically and pushed X towards the door.

This is illegal and highly inappropriate behaviour of a healthcare professional toward’s a client’s relative.

Y screamed and reached for X, looking horrified that he was not keeping to his word that he would be with her.

We stood outside, X feeling terrible. V approached, took his hand, and sympathised with how difficult this was for him. She expressed severe concern over the mistreatment of Y. X was appreciative of this support, so we both hugged her.

Even in a place such as this, in the midst of cruelty unfathomable to most humans, glimmers of empathy and kindness still show from people who are every day beaten down, abused, made to feel valueless, made to feel their lives are not worth living.

We sat. X and V overheard two other residents, Q and W, at the dining table, speaking of the general discontent among the residents about the extremely poor standard of care they receive. Q agreed that care was far from acceptable here, but declared that they couldn’t complain, because ‘there were worse places’. We worked out from the rest of the conversation that staff had told her this, and, as a vulnerable old lady who unquestioningly respects authority, she believed them.

What does this say about misuse of power or influence?

Meanwhile, I saw R struggle as he tried to pick up his plate and cup from his afternoon tea, to bring to the kitchen: quite a difficult balancing act when one uses a walker. He succeeded, but I was watching so I could step in to assist if he needed it.

Perhaps this could be an idea for staff to take up: create a nurturing environment where people feel safe to use whatever abilities they have, and be ready to help if the person requests it.

A member of staff (whom I didn’t recognise) passed us. She said to X, V and I that the alarm system (i.e. the buttons residents have on their wristbands t press for assistance) wasn’t working again. X asked when they would be fixed, and she said she didn’t know. V pointed out that if the alarms didn’t work, then more staff should be paid to be on duty, so that anytime assistance was required by a resident, someone would be nearby to help. The staff member shrugged and said she was not the person to talk to.

Who was then? And why does she not seem to even care?

Fifteen minutes later, the two staff left Y’s room wordlessly, carrying a soiled disposable bed sheet and diaper. We went in to see Y slumped in her chair, crying at the table in her room.

This was an unforgettably tragic scene that has not left my mind since.

We sat with her, and hugged her. Staff member 8 returned in a few minutes with afternoon tea for Y. Y was embarrassed that we too had not been served, and showed distress and discomfort as a hostess. We said it was OK, we would make tea and join her. As X made tea, Y divided her food- a slice of cake and a biscuit- into three equal pieces, pushed her plate to the centre of the table, and gestured for us to take some. She even gave some of her portion to X as well. We shared the food and talked; Y looked happy.

As I said earlier, glimmers of human kindness are all the more noticeable here, astonishing even, given the abuse these people receive from fellow humans.

After tea, X opened Google Maps on his tablet, and showed Y the satellite picture of the village, pointing out The Facility. Y was interested, and traced areas she knew well on the map with her finger. X then showed her Ireland on the map, explaining I came from there. She was distressed and waved for the image to be taken away. X told her about when he had been to Ireland, and showed where; Y was interested and listened to his stories. I showed her then where I come from, and she got upset again.

I was confused as to why Y seemed to be rejecting me. Gradually X worked out that this showed similar traits to another case he had experienced here, which seemed a likely explanation. A friend of Y’s, who stood up for her, was portrayed as an enemy to Y, by Z and staff, so Y would turn against her and mistrust her.

This is another punishment to me for reporting and for being here. However, I am here to help X and Y, so even if Y loses trust in me, I will still do everything I can to stand up for her and X.

1/37i

DAY 37 (continued)

Apologies for the delay. I will divulge details of my interactions with relevant authorities, which occupies far more time than it ought! Meanwhile, here is the remainder of my chronicle of Day 37.

Y was a bit dazed still, so X picked up the guitar and we sang together, which often wakes her up. She was enthusiastic, gesturing, conducting, tapping in time, singing all the while. I sang an Irish song she recognised and she joined in; at the end she took my hand and smiled. V came in, sat with us (Y greeted her), and sang too; she wanted company, she said it was too quiet outside. I didn’t know the words to the songs in The Language Of The Country, but I knew the tunes so I sang along anyway; Y turned to me, pointed and complimented my singing.

Ever observant, she pointed and laughed as a flock of birds swooped past the window, and waved at a couple of toddlers playing in the snow.

When Y began dozing off, and losing track of what we were doing, we stopped singing, V left (Y said goodbye, holding her hand), and we asked Y if she wanted to get some fresh air before dinner. She put her hand on the table to try to push her wheelchair away, as she does when she wants to go outside, but she seemed to forget why her hand was there, and got upset.

She often got frustrated by her own forgetfulness and un-coordinated movements; she knows these are caused by her medication, and that is an extremely distressing inescapable trap, I imagine.

We said we’d help. We asked again if she wanted to go out, and when she placed her hand on the table, we pushed her chair in the direction she wanted. She cheered up.

Y got dressed to go out. This process took a long time today, as Y kept losing track of what we were doing, and crying with frustration and confusion. Finally, she was warmly wrapped, and we went out; staff stopped us in the corridor to remind us dinner was in 25 minutes, and to ask if we planned to be back. Staff member 8 followed us and opened the door for Y. Staff member 9 passed us on his way in to work, glared and was silent.

I don’t mind if he expresses disregard for me or for us, but for a member of staff not to greet a resident there was extremely rude, I thought.

We walked on the snow. Y was entertained, as X told her we had driven on the snow to get here, and the car had been sliding a bit. Y laughed, and made a car engine noise while gesturing losing control at a steering wheel.

It is so good to hear her laugh and joke with us; she glows with happiness when we respond.

We were very careful on the ice on the hill down to the road, but Y was giggling. We didn’t have much time, so we suggested we check the nearby community noticeboard for upcoming events. Y read all the notices and laughed when X struggled to push the wheelchair through deeper snow so Y could get a good angle to read from. Generally though, she was quiet on her walk today, sinking into herself. When we returned, Y crying as usual, she at least had a better colour in her face, which the staff commented on.

As we returned to her room, I saw Q in her wheelchair in front of the TV. Her head was lolling very far back, completely unsupported, and she was struggling to rearrange herself, as she is extremely weak and limited in mobility. I was worried so I turned, saw 9, and said to him ‘It’s Q, her head is falling back’, gesturing what I meant. He didn’t speak to me but walked over to Q and saw I was correct. He began readjusting her head support as we went into Y’s room.

Isn’t this his job? Why his apparent disdain? Why is he working in a caring profession?

Y removed her coat, etc. She was again very nervous around me, so I kept my distance, and X told her again what I was doing to help her. She smiled and reached for my hand, but the next second she was screaming in distress at me again.

It seemed she was not having a good day in response to her medication, but since yesterday there is definitely a change in her regard for me too. I don’t know what has been said, but anyway, onwards with the mission to help.

I am sad, which is what was intended I think, but I am not intimidated out of continuing my job.

We brought Y to the dinner table, told her we’d be back after dinner, and left: usual distressed response.

We returned tonight at 7.40pm. Y’s door was locked. Staff member 12 opened it, while explaining that it was policy to lock all the doors at night, to prevent confused residents walking into someone else’s bedroom. (This is the newest excuse the staff have provided.)  X asked ‘but what about the staff on night duty?’, to which she didn’t respond. We went into the room, and about a minute later, 8 had opened the door behind us, fiddled at the lock for a bit, then left the door half open. It was still in ‘locked’ position.

Was she just trying to open the door so the staff could see/hear us, or what was going on? I had approached and asked her what she was doing when she was there but she ignored me, then walked away.

While 12 was unlocking the door for us, I saw S asking another member of staff to leave her door open, as she couldn’t open it herself and she was afraid of being closed in.

Y was in bed, not asleep, but again sedated and confused. We both greeted her with a hug; we noticed that she smelled bad. X thought it was her mouth, as her teeth had not been brushed again. I thought it smelled like something rancid spilled on her skin, maybe milk or vomit.

We checked her medication: 7.5mg Zopiclone had been administered again tonight. 12 (staff) came in unexpectedly at one point, asking ‘is everything alright in here?’ It’s reassuring that she was checking up on Y but it felt a bit awkward, like she was checking up on us.

At 8.20, Y was asleep so we wished her goodnight and left. (The washing machine in her bathroom was on a spin cycle, and was very loud. I don’t know how she managed to sleep through that noise.) Outside in the corridor, S had opened her door wide, and sat in a chair in the corridor, two jumpers and a warm hat on, trying to sleep. I did not go and kiss her goodnight because two staff members were watching us to make sure we left immediately. We left.

I felt terribly guilty right then, for being intimidated out of giving S the support she needed. I resolve to be stronger.

1/38

DAY 38

This was another long day, so I will post some now and the rest this evening.

I would like to thank you for reading this. Change can only happen if the issues we see here are acknowledged and objected to. World Stroke Day is this coming week, 29th October. Perhaps you know someone who has suffered a stroke, and could visit or call them to remind them that they are an invaluable and loved person. Or perhaps you don’t, but could contact your national Stroke Association to see if you could donate some time or capital to help make stroke victims’ lives a bit more joyful. Or perhaps you feel helpless but that you would like to do something? Then open your eyes. Can you see anyone who is being mistreated, disregarded, made to feel worthless, in any way? Stand up for them. Support them through change for the better. Be there to remind them every step of the way that because they exist, society is richer.

We arrived at 11.30am. Four residents were parked at the table for lunch already, and all other rooms were locked.

S was at the table. She waved keenly at me, I hugged her hello, and she clung to me, repeating, ‘I am so glad you’re here, I’m so glad you’re here,’ gesturing that she meant X too.

Y’s room was locked, and we could hear her scream. We knocked, three times, at intervals. No staff were to be seen. Then we heard voices in Y’s room, and the hoist being operated. When it stopped, we knocked again, wondering what was going on. The door opened a few minutes later, and Y was wheeled out in her chair by staff member 8.

So Y had just been brought out of bed. She had not eaten or brushed her teeth, as we could smell. Her bed was still warm under the blankets.

She was very happy to see us, and greeted us both warmly. 8 parked her chair at the dining table; it was 11.40, and lunch was at 12. We asked why she was being placed there already, but were not answered. We spoke to Y then, and 8 snapped that we were not allowed to be here, that was the rule. X asked why, she repeated that was the rule, and tried to push X back. Y shrieked and hit 8 when she saw her strike out at X, her son. 8 turned and forcefully restrained Y’s arm, hissing again that we were not allowed in this room and we would all have to go back to Y’s room. She quickly shoved Y’s wheelchair, very roughly, into her room before signing the wall chart in the bathroom that Y had been taken to the bathroom twice this morning, had had a shower, and had done her physical exercises. Then she closed and locked the door behind us.

The room smelled of human waste. Y was confused, as was I, at what had just happened. We sat at the table there in Y’s room instead, talking. Y seemed sleepy this morning. We wondered what she had done yesterday, when we hadn’t visited, to leave her so sleepy today.

Had we been there, we would undoubtedly be blamed for exhausting her.

As singing often brightens her up, X picked up his guitar (moved again to beside the door, and facing the corner, which is damaging for the instrument). As he did, Y seemed to come alive, quietly humming a melody, waving her arm in peculiar dance-like gestures, and raising her eyes to the sky outside. She ended when X returned, her head uplifted, arm outstretched- it was a completely beautiful spontaneous artistic moment. She had been in her own world, and took a moment to become present again.  We sang a song together. 13 (staff) came in at midday to ask Y if she wanted to come out to the dining room for lunch, or stay in here with us. Y nodded enthusiastically to stay in with us, so 13 left to fetch her lunch.

This was the first time I had seen any staff member directly address a question to Y. Are they making an effort as they read what I am reporting here? That would be wonderful.

She returned a few minutes later with a tray of lunch for Y, and put a plastic bib around her neck before leaving. X said he would go out and pick up some pizza for us so we could eat together. He asked Y if it was OK that I stay with her for the few minutes until he came back; she nodded and waved him goodbye.  She and I sat together, looking out at the snow.

I have learned she is a little afraid when I speak to her because she can’t understand my language, so we sit quietly, communicate in gesture, or I find some conversation topic whereby I can use my extremely limited vocabulary in her native language, which she greatly appreciates.

Staff member 8 came in (without knocking) and looked angry, so I quickly explained that X had just gone out to get us food so we could eat together. She glanced at me, said nothing, and started moving the things off Y’s tray, though Y objected. 8 stuck the spoon in Y’s soup and told her to eat. Y gestured that she would wait until we three could eat together. 8 tutted and placed some of the things (dessert, a stray haircomb, a serviette) just out of Y’s reach before she marched out again, and locked the door behind her.

Why lock the door? Where did she think we might run away to? 

X returned, and set our pizza on the table;Y made space by moving things. We ate together, sharing our food. Afterwards, X suggested Y brush her teeth, since she hadn’t done so today.

We checked- her toothbrush was dry. So too was the bathmat, shower floor and sponge, so she had not had a shower, contrary to what was written on her wall chart.

Y agreed, and they went into the bathroom, where Y brushed her teeth herself. She returned to the table, smiling; she must have felt more comfortable, I imagine.

Her dental hygiene has been grossly neglected by staff over the two years she has been here. Her teeth are so rarely brushed that, although she had a full set of strong healthy teeth when she arrived, they are rotting, infected, and she has lost most of them. So too have many residents here, I notice. Aside from causing her excruciating pain when she does brush them, there is huge danger from potential infection for a woman of her age.

As we talked some more and cleared up from lunch, Y’s eyes had begun to glaze over, she was upset, and her movements become awkward. We asked if she would like to go and get some fresh air. She assented, so we brought her over to her wardrobe, and she got dressed in her outdoor clothes. As she did, 8 marched in, again without knocking or greeting Y, and rummaged through a few cupboards before leaving and locking us in again.

How very strange! Is she working in a storage warehouse?

As we finished, we could smell faeces very strongly around Y. We realised too late why she had suddenly become upset. We asked if she needed to go to the toilet, and she nodded. X helped her press the assistance button (Y was too confused, un-co-ordinated and distressed) at 2pm, and it was answered within a few minutes, by 8. She asked curtly what we wanted, and X replied that Y needed the bathroom. 8 looked down at Y saying, ‘I thought you were going out.’ X answered, ‘Yes, but Mom needs the bathroom.’ 8 laughed, rolled her eyes and walked away saying, ‘What a mess!’ X removed Y’s outdoor wear before 8 and 13 returned. Y buried her chin in her chest; she seemed ashamed and frightened. We said we’d be back in in a moment, and left the room. We sat outside in the dining room. The TV was off and the controls confiscated again.

I excused myself to go to the visitors’ bathroom in the entrance hall. S was sitting at the door as I went out, and was keen to come out with me. I explained I was going to the bathroom and would be back in a moment, but she insisted, and sat in the entrance hall. (As an aside, the visitors’ bathroom was filthy.) When I came back out, I talked to S for a while. I mostly couldn’t follow what she was saying, but I listened anyway. Then she suddenly brightened and asked why X’s Pappa had not been in today; I replied that I didn’t know, and she sniffed disapprovingly. We talked some more. S suddenly leaned forward and burst into tears. I hurried to support her and hugged her for some minutes while she sobbed on my shoulder. Once she was calm, I apologised and said I needed to return to Y. S nodded that she understood and waved to me, ‘bye for now’ as I left. I noticed as I left that she smelled like she had been wearing a soiled diaper for a long time.

I returned to X, who was still waiting, after 17 minutes. Y was screaming and crying. 13 left, carrying several soiled diapers and a soiled disposable bedsheet. After a couple more minutes, 8 came out, with Y’s lunch tray. We asked if she was finished, and, walking away from us all the while, she said yes, adding ‘but she’s lying down, she was tired’.

But Y had said she wanted to go for a walk. What had happened in the last 17 minutes? And had the staff even asked her what she wanted? It seemed that she was being punished for needing the bathroom, by being forced to bed and, we saw, denied afternoon tea, which was then (at 2.30) served to everyone else.

We went into the room. Y looked anxious and confused, lying in bed. She was flat on her back again, coughing badly and still struggling to breathe.

She dozed off after 15 minutes (as I would too, if put to bed, told I was tired, and sedated every day with strong drugs). My point here is that the staff use ‘she’s tired’ as an excuse for leaving her out of many activities (church and meals, for two examples), and for isolating her in the dark. 

I sat with her, observing that her breathing again kept stopping for up to 45 seconds at a time. This makes me very anxious. X meanwhile documented her medication. The staff had just now marked that Y had diarrhoea, as she defecated three times today, by their records. This may be the case, or it may not, since I doubt that they had to change her diaper, much less assist her to the toilet, twice this morning, as they were only taking her out of bed when we arrived at 11.30.

We left just before 3, telling Y we’d be back later. She was awake enough to nod, say goodbye and wave to us as we left.

1/38i

DAY 38 (continued)

We returned at 6.55pm. Y was in the living room, watching TV. Staff member 2 approached within a few minutes to tell us to leave and go to Y’s room.

Y wanted to watch her TV programme, but she was forced to make a decision between doing what she was doing and being in company. Why should she have to make this choice?

X asked why; 2 said she was just following the rules set by the facility manager. X said he had had a meeting with the facility manager recently where she had said that the rule was at staff’s request, because X was a danger/threat in their work environment. 2 shrugged and said, ‘There are more staff than me.’ X asked who then had requested this ban, but 2 refused to discuss it. X asked whether 2 thought that staff should have the courage to stand up to their boss if they disagreed with her rules, and 2 said that courage had nothing to do with it, before walking away. V came over to hug X and I in greeting. She held our hands as she talked to us both. 2 returned and told us more insistently we had to leave the room. Y chose to be with us instead of continuing watching her TV programme, so we went to her room. X and I made ourselves supper, so we could eat along with Y. Y gave most of her sandwich to X. He tried to return it, saying thanks but he didn’t like the topping; Y picked off the topping, put it on her plate, and gestured for X to eat the bread. He thanked her; she smiled. After supper, we watched some old movie clips and Youtube music videos; Y smiled and tapped along in time to the music. During one song, 2 and 6 entered (without knocking). 6 saw the video, recognised the song and clamped her arm around Y’s shoulders as she watched too; Y was frightened and shrieked. Meanwhile, 2 told X over Y’s head, ‘We’re putting Y to bed now.’ The two staff closed the blinds slowly during the song; Y watched nervously. The song finished, and Y was still laughing at the funny video as 6 grabbed the wheelchair and pulled her back quickly. Y cried out (she was still holding X’s hand, and held on tightly, so her body leaned forward in the chair as it was pulled back); 6 pulled Y back by the shoulders, wheeling her backwards into the bathroom and locking the door. Y’s screams were horrific. 2 bustled us out and closed the door behind us.

It was 8.50, all the bedroom doors were closed, and no residents or staff could be seen. The communal room was dark, though R still sat at the table, looking confused. We sat in the corridor outside Y’s room. 6 came out carrying a trash bag; she told us we weren’t allowed there (in the communal room) and we had to go out. When we asked why, she rolled her eyes and repeated that ‘the boss’ had set the rules. When X asked whether she thought it was appropriate, she answered, ‘We don’t think for ourselves, we just do what the boss says.’

This goes against the national law which states that every staff member is responsible not only for their actions, but for reporting themselves or their employer if they see abuse. 6’s excuse is not one which should be heard from a healthcare professional who is working with vulnerable people. I believe that all adult humans are responsible for their own actions; with dependents, this responsibility increases.

She went to the kitchen to fetch yogurt for Y’s medication, and on her return, she refused to make eye contact but repeated we were not allowed in the communal space. We asked if we could be in Y’s room in that case; she said no, and went into the room, closing the door behind her. At 9.10, both staff emerged and said, ‘It’s clear’. Y was very sleepy when we went in. She still stopped breathing regularly, and sounded like there was a lot of liquid in her airways, which made her breathing sound very laboured. We documented her medication. A newly soiled diaper smelling of faeces was in the trash in the bathroom, but no bowel activity was documented on her wall chart; this further emphasises that the chart bears little likeness to reality. We wished her goodnight (she was almost asleep) and left at 9.40.

As we walked out, 6 was friendly and chatty, as she is our neighbour in the tiny area where we are living. How can she be a nightmare care assistant one minute and perfectly nice and approachable the next? A local told me yesterday that the staff here are all actually very nice (apart from the facility manager, she said); now I see that, outside of their work mode or environment they may well be, but that does not forgive their professional misconduct.

1/39

DAY 39

We arrived at 7.10pm. V was sitting in the entrance hall, so we talked; she was very worried about Y and how she is being mistreated. We said we had seen her through the window, sitting in the dining room for supper, alone, facing out a window into the dark. V nodded, saying that Y was being punished; she added that she knew how difficult it was for X to see his mom abused like this, and that she was very proud of us for visiting and reporting as we are. We thanked her and went into the dining room to greet Y (V was herded in by two staff behind us). Y was very happy to see us, hugging us both. She was just finishing her supper when the other residents were being brought in for theirs.

Why do staff isolate residents as punishment? Punishment for what crime? Who are the staff to punish those they purport to care for? What kind of place is this?

R talked to me, asking where his backpack was, it had been ‘over there’ and ‘they’ had moved it. I wasn’t sure if this had happened or if R was confused, but I sympathised nonetheless. We talked to Y; I noticed she was wearing her wedding rig again, for the first day since they were removed to tend to a wound on her finger. We pointed it out and she seemed unaware that it had ever been missing. We also noticed a BandAid on her forefinger of the same hand; what had happened?

She began a coughing fit. Her cough is worsening, leaves her exhausted, and sounds very painful (X and I worry that with lying in bed so much of the time, she may be getting pneumonia). A staff member approached behind Y and told us the rule said we had to go to ‘her’ (the only reference to Y) room, starting to pull the wheelchair away as she spoke. We asked why, pointing out that Y was still eating supper, and after a moment of weakly repeating herself, she walked away, gesturing irritation; Y smiled. She burst into song, and X and I joined in. 8, another staff member, told X we should stop because the other residents didn’t like to hear Y sing; none of the other residents, all present, had objected in any way (if anything, the opposite). We finished the song anyway. T turned round to us (we were at the small table beside the main table, where Y and R, the residents who are usually isolated, are placed normally) and told us he had been practising harmonica again. We had heard, so we praised him, and asked when he would play for us next. He glanced at Y and said he had yet some practice to do (I love that he wants to play well in front of Y, as she is a good musician). He looked happy at the compliment though.

R approached me again, and talked at length; I didn’t understand but when X translated, ‘He says he wants to die. He asked what is the quickest way,’ I couldn’t help but cry. Y noticed, and tried to cheer me up.

This was the most touching moment of the day. The deepest tragedy is met with deepest concern. These people are truly amazing.

Finally, when Y had finished her supper and had agreed to leave the room, we went to her room instead. We noticed a strange addition to her name plaque on her door; it now read ‘Y and Z’! I was gobsmacked, so I took a photo, much to the discomfort of the staff, and entertainment of some residents at the table. Y did not appear to have any new room-mate when we went in, however…

What are the staff here trying to do? Prove Z’s dedication to Y? It’s just ridiculous.

When we had sat at the table, we asked Y about it. She looked blank. We told her what it said; she raised her eyebrows, then started to shout angrily and thump the table with her fist. We asked if she wanted to see it and she made a very definite gesture ‘yes’. We wheeled her out to look at it. She pointed and read, laughed incredulously once, then burst into tears. X reassured her that it was just a silly mistake and would be rectified, and we returned to her room, closing the door (I heard it locked behind us).

Y’s response is telling of her relationship with Z; she knows he denies her appropriate care, and puts on a show of dedication for authorities when forced too.

Y continued to cry for a few minutes, so we talked about different things she likes to cheer her up- the local dance festival X had organised in 2012 (she had noticed X’s festival T shirt, pointed at the image, and read the slogan), different friends who were supporting us, what we were doing about writing and reporting. She pointed to the dresser; she had a poster from the dance festival, and wanted to see it. It had gone. We checked all the drawers, under everything else: Y was upset, so X promised to try to find her another.

She had been so proud of it. Who had removed her private and treasured possession, and why?

We opened a music-making app on the tablet, and together we worked out and played some chords. Y was skillful pressing icons on the tablet, following our construction of chords, and playing them on the device. We moved on, X picking up the guitar, and tuning it using another app (this again interested Y). He took a phone call, during which Y was quiet, politely waiting for him to finish the call. She and I talked quietly to pass time, sang a bit, and admired some of the ornaments around her room. She saw the bobby pin from my hair on the table, and laughed, remembering when we had used it to fix something a couple of days ago. Guitar tuned, we had just sung a couple of songs when two staff members walked in. They said ‘Right…’ to X, which meant that they were putting Y to bed. He asked Y if she wanted to go to bed now. She objected and stared at him, as though wondering why he was asking when we were singing together. One staff member came into Y’s line of vision, and told her in a condescending tone that she was going to bed now. Y shouted and thumped her.

It must surely be obvious that Y is expressing a preference. Why is it not acknowledged or responded to?

Meanwhile, her wheelchair was pulled towards the bathroom; she screamed and reached out to us as we were forced to leave. It was 8.35.

We waited in the empty communal room. T was playing harmonica again. I could hear R calling ‘hallo, hallo’; his and all the other doors were locked. S shuffled into the room, and I sat beside her, hugged her and listened to her. Most of her speech was incomprehensible, but I understood she was very glad I was there, that she felt safe with me, and she took my hands, holding them tight. She wished me goodnight and left. At 8.50, we were allowed back into the room. Y was in bed, crying a little. She hugged us. Her room was too dark, so when I asked if I could change the lighting for her, she agreed. I sat with her when X went to the bathroom to document; she dozed off, but her sleep was broken by sobbing, agitation and coughing. She kissed us both goodnight, and we left at 9.35.

Staff member 8 was again a lovely friendly chatty neighbour when she wasn’t in ‘work mode’ and treating Y roughly, i.e. when we were leaving. I can’t understand the split personalities I see among staff here.

Corruption

Today I want to provide a little context to my chronicle.

Amid the most spectacular mountainous landscape, this village lies far north, about 140km from the nearest town, and 240km from the nearest large town. The village’s population is about 400-500. Most people were born and bred here, went to the local school, and returned here to work and raise their families. Everyone has family in the village. Very recently, a small immigrant population has moved into the village, to mixed response.

The walls and trees have eyes and ears here. One can say something to another person in the privacy of one’s own home, and before the day is out, the entire village knows all the details. People gossip idly about the suspicious deaths, mysterious assaults, questionable job losses, but nobody will publicly or formally divulge information. Intimidation into silence has even driven some to suicide.

90% of the people here are hardworking, honest and community-minded, generous with their time and skills. A small minority, as is unfortunately so often the case, maintain a reign of terror. This is a very strong accusation, but what I see here falls nothing short of a mafia-run society. The village is not alone in this; the entire municipality, in all its functions, is driven by a small number of individuals who are ambitious beyond concern for anyone else, manipulative and controlling.

I can back this up with a number of experiences, though I have only been here for six weeks.

Let me begin with the core dilemma, my reason for being here. A stroke victim is denied care for her indescribably painful affliction, one of the most common ailments in the so-called developed world today. Leaving aside the complications of family involved in this decision, the fact that the healthcare and judicial system both overlook this basic fact beggars belief.

When Y had her stroke (In June 2012), a referral to rehabilitation was promised for her by the doctor in ICU, as is standard practice.  Something then happened during Y’s second week in ICU- X was not present but his sister was- with the result that this decision was changed. Access to the records has always been denied. What happened?

Y was moved to The Facility (in July 2012) against her will, a place which could not accommodate her needs, and on top of this, had a dreadful reputation for mistreatment. This was arranged by her husband and daughter, who claimed that Y could not speak for herself.

Much later, these two claimed that by suffering a stroke, Y now had irreparable brain damage and could not recover even with rehabilitation. This was accepted and declared legally valid by the district court, based on false evidence provided by an unscrupulous GP. (This doctor had initially also written Y a referral for rehabilitation, but changed his mind when Z ‘clarified’ the situation to him. A second opinion was sought from a crony in the next village. Neither doctor has sufficient neurological expertise to assess this or make any such claim.)

Z was much later (between September 2012 and February 2013) officially appointed as Y’s legal spokesperson, in a highly questionable manoeuvre approved by the municipally-controlled, though theoretically independent, Guardian.

When Y first arrived at The Facility (in July 2012), her daughter ensured the staff would lock Y in her room in the dark, alone, forced to stay in bed, claiming she needed ‘rest’ in her weak state.

X heard about this treatment from another resident’s visiting daughter, and saw it with his own eyes later that month. He questioned this treatment and the fact that Y was being denied post-stroke care. His sister reiterated that the treatment was necessary, for Y to ‘scream out her anxieties’, to come to terms with her new post-stroke state, to process her internal impressions.

Realising his concerns were falling on deaf ears, X consulted a local man who was regarded as knowledgeable; he was well-known as a very influential man in village life. This man then went to The Facility and reinforced Z’s affirmation to the residents who agreed with X, that Y should not have rehabilitation. Because this man has power in this small village, The Facility used his command as support for their actions. When one resident continued to object despite intimidation from Z, she was declared mentally unstable and therefore unreliable.

X continued to object. Some villagers whispered support, but were too intimidated to ever do this publicly; they knew there would be severe consequences. Even friends of X from outside the locality or country would visit, witness the abuse, and express outrage, but were quickly intimidated into silence or disengagement. Thus the intimidators gradually isolated X, in the hopes of forcing him to abandon the pursuit of justice.

X refused to give up.

He was denied medical attention when he fell seriously ill, forcing him to travel 800km for urgent care. Even then, so far from the municipality, he was refused the standard tests by the doctor he visited, whose husband coincidentally was from the village; later she was more helpful, but encouraged X not to get too involved in Y’s case ‘for the sake of his health’.

He was directly threatened by the municipality mayor, that he and Y were not safe if any of this abuse was brought out publicly.

At farcical ‘care planning’ meetings at The Facility, he is publicly or privately harassed; falsely accused of abuse, mental instability, dishonesty, manipulation; and threatened. The local ambulance crew, dubiously claiming to be answerable to the facility manager, is used as her personal security service, forcing X to leave the building, or refusing him entry, when he tries to visit his mother.

Villagers advise X not to report to the local police, as any report made against the municipality will endanger Y, him and anyone supporting him.

The local church sees the abuse and looks the other way. Y is a devout practising Christian, pained more by this corruption of the church she has actively attended all her life than any of the other authorities.

Even the local newspaper, cronies of the municipality mayor, ran an article on how X was a threat in the workplace for the poor staff at The Facility.

It is not just locally that the abuse is denied. Nationally, the health and social care inspectorate claim to fulfil their role by relaying reports of mistreatment directly back to the accused facility. The purpose of this, that the mistreatment will be rectified, assumes the honesty of the facility, and their will to improve the experience of their residents. It does not account for a facility carrying out abuse intentionally, and has no structure in place to deal with such a case. The national police refuse to help, claiming that local police must be involved first if a case is to proceed to the next level. There is no structure in place to deal with an ‘inefficient’ (their term) local police force who ignore crimes reported if these are against their cronies, the municipal politicians. Government ministers I have contacted pass the buck, from minister for justice, to minister for health, to minister for the elderly, back to local politicians, and all deny that their department has any role in the matter. Leading medical experts in the field claim to support X’s pursuit, and agree that Y’s circumstances are extremely life-threatening, but they all refuse to say anything publicly, citing as reason that they will lose their job. So the whole healthcare profession does not allow peer criticism for improvement of service, or simply for prevention of mistreatment and murder. There is no independent ombudsman to report to (only the health and social care inspectorate I first mentioned), unlike any other country, as far as I am aware.

Nobody could have imagined how long this would take, or what hardships suffered, for an aim that seems legally and to all human senses straightforward: seeking appropriate care for a common affliction. Harassment has taken its toll on X’s and Y’s physical and emotional fortitude, understandably; Z and X’s sister have used this to claim mental instability on the part of X and Y, as suits their self-centred goals.

The battle which ought not ever even be necessary is not yet won. Every day, the victim, Y, is still in the same predicament. Every day, new ways are found by her antagonists to thwart her chances to recover or to have a decent life. Every day, X wakes up knowing he needs and wants to help Y have the basic quality of life any human deserves, and that in this absurd situation, that involves fighting long and hard.

I’m on X’s and Y’s side. Are you?

1/40

It’s World Stroke Day.

In case you witness symptoms of a stroke, recognise the signs and act immediately: http://www.strokeassociation.org/idc/groups/stroke-public/@wcm/@hcm/@sta/documents/downloadable/ucm_467609.pdf

DAY 40

An aside: in the store today, a friendly local was telling us at length about the problems in the village’s immigrant community, where 5 people, members of IS, are lethally threatening about 30 of their compatriots. This local was very angry and upset by this, declaring that this should not happen. Why then do the villagers accept mistreatment of locals against locals, in The Facility?

We did not visit Y yesterday. Every Saturday so far, Z has complained that Y has been exhausted, because we have visited on Friday night. We wanted to experiment to see if Y was any better if we didn’t visit on Friday evening.

We arrived at 2.05 today. The flag outside was at half-mast; we were told on entering the building that Q had passed away that morning. We met two friends in the car park on our way in. This couple are very long-established friends of Y, who visit her with Z every Saturday. Apparently this week, they had arrived and sat OUTSIDE Y’s room waiting for Z. He didn’t appear. They were concerned, especially as he usually lets them know if he needs to cancel, and they couldn’t reach him on his home phone or mobile. They then left without visiting Y, to go to Z’s house to check up on him. They did not return.

X wondered who they had come to see anyway.

We went in, to find a staff member at the table in Y’s room, talking to her.

It was a bit odd, as this had never happened before, but staff seem to be making a big effort to show how attentive they are to residents since I have been reporting, so we are still grateful that staff were interacting socially with her, even if it was for show.

Y was in very poor form today.

So our experiment shows that it makes no difference whether we visit on Friday night or not, she is still confused and dozing off on Saturday during the day- perhaps something to do with the excessive sedative medication she is given?

We had brought her some cookies to have in her cupboards so she can offer coffee to any visitors (we had cleared a heap of out-of-date snacks from her cupboard last time); she was at first confused, but happy once we explained slowly why we had brought them. Staff returned with morning coffee for Y, explaining to us (not Y) that the undertakers were arriving for Q, so everyone was being served morning coffee in their rooms, to avoid upset. Staff member 11 leaned over, blocking me from Y, talking to her face for a short time. She took Y’s hand; Y took 11’s fingers, quickly clamped her thumb and fingers so as to immobilise her, and flung her hand away. This was a strong gesture from an otherwise vague and seemingly-tired resident. 11 left.

Y divided her cake in three again, and gestured for us to share with her. After she had finished her tea, we asked if she wanted to go out for some fresh air; it was a beautiful sunny day. She assented and pushed herself from the table. It took a long time for her to get warmly dressed; she kept getting confused, frustrated and tearful. We eventually left around 3.

As we walked down the street, we saw Z with his daughter’s partner; they greeted Y, who was very excited to see them. They explained that they were going hunting together. (That maybe explains why Z had apparently forgotten about Y and her friends earlier.) The second man seemed very awkward and uncomfortable around Y, laughing at her when she pointed or made sound or grabbed his clothes. They left after saying hello, and we continued on our walk.

It was a weird interaction.

Y cheered up as we paused in the sun for a few minutes, we were greeted by neighbours, and some small children playing in the snow engaged with her. Otherwise, she was mostly quiet, confused and upset. We visited her friend in the store on our way back. Y was very happy to see him, and he reciprocated by hugging her warmly. We sat in the cafe and had coffee. Y had a long coughing fit that sounded very painful and distressed her greatly. We tried to comfort her. Y’s response to me suddenly changed again; she screamed at me several times. I was a bit shaken by this. X explained to her again what I am doing. She understood and gratefully took my hand. We continued back to The Facility, where Y slowly took off her outdoor clothes again (she was still very distressed and confused), before we sat at the table (it was 4.45) to talk until dinnertime. Y was very uncomfortable around me again. We left Y to the dining table, where she was, as usual, upset that we were not joining her.

X documented her medication. I was standing by the door of the room, the door pulled closed but not sealed. I heard dinner being served and, aside from Y screaming, complete silence in the room. Then I heard R, who had until now been shouting behind the locked door of his room, being led through to the room. He started to shout in English, ‘I wish… all the life… has ended’. There followed a staff member snapping at him to speak in The Language Of The Country, and then R trying to formulate another sentence, muttering English and other words. When he was seated, he shouted out once more, ‘I want to die. R (stating his full name), I want to die.’ I knew he was shouting in English for me to hear. This was an incredibly brave thing for him to do.

We left at 5.20.

1/40i

DAY 40 (CONTINUED)

We returned this evening at 7.55. Everyone was seated in the dining room having supper, except Y. We greeted them all, then went to Y’s room to find it dark but for one small lamp, and her fast asleep in bed.

She must have been in bed for some time to fall so deeply asleep. When had she been put to bed? Staff later told us their standard answer, that she had gone to bed just before we arrived, that she had had a good evening, had eaten well and had a nice time, then said she was tired, so she was brought to bed.

We left Y’s room after a short time. S approached us in the corridor, and we greeted her. She indicated that her bedroom door was closed and she couldn’t open it. We offered to help. When we opened the door, she tried the handle a few times herself, but could not depress it sufficiently, so we pulled it wide open for her. She went in tentatively, looked around, and said sadly ‘This isn’t nice. This isn’t home.’ She returned to the door, and, wishing us goodnight, said that she wished I could stay with her, so she would be safe. I hugged her and said I’d see her tomorrow.

We left at 8.40.

1/41

Following World Stroke Day yesterday, I have been reflecting on the nature of this affliction, and its effect on a victim’s life. The almost miraculous work of rehabilitation is surely one of the most humane advancements of medicine. That rehabilitation is now standard practice, following the immediate intensive hospital care post-stroke, in the developed world is a victory for human empathy. That a stroke victim’s family still fight to deny the victim this care, and encourage directly contravening treatment is all the more horrific.

DAY 41

We arrived at 1.55, for church service. The room was very full- Y was present (Z, off hunting as he had told us yesterday, was not). She greeted us both very warmly, as did the other residents. It was a longer service than usual, and Y was not at her best (a little confused), so she struggled to concentrate. However, she loved the singing, listened to the readings, and was clearly happy to be among a large group of people. After the service, she greeted everyone who approached her (many locals from the village, and her friends from yesterday’s botched visit, as well as the residents). We chatted with everyone at our table during coffee after the service. Y was keen to make sure X and I both had a seat and a cup, and she filled our plates with food. Her cough today was still persistent, and she was exhausted and very distressed after every coughing fit; she seemed to be in pain from coughing. I sat between Y, V and R. I made sure R had coffee and food, and someone to talk to, though he was fairly quiet today. V had been placed back against a wall, far from any table, so I pulled my chair over beside her and we chatted, without any common language. We met a new church-goer, a young man who had volunteered in care homes in his native country, and who was keen to both speak English and meet some of the residents here. I introduced him to R, S and T, who were all very happy to talk with him. He immediately noticed R’s hearing aid was beeping and crackling again, so he asked me to point out a member of staff who he could ask to help fix it. I pointed out 7. When our new friend asked 7 about it, he left the room and didn’t return. Y was still drugged and vague, but she enjoyed the company greatly; she burst into song, as she often does when she’s happy (X and I joined in, as did some residents, though staff glared at us).

After coffee, we asked Y if she wanted to get some fresh air before dinner, as it would get dark soon. She nodded, so we went to her room to fetch her warm clothes. She was slow to get dressed, and stopped, upset and frustrated, regularly. We left at 4.10, Y opening the doors herself, and pulling herself along holding X’s hand. As soon as she left the building, she brightened up. We walked by the lake, enjoying the view and the mild air. As we returned, she began to fret and cry; we kept stopping to ask if she was OK. We approached The Facility, Y shouting and crying, but pointing towards the door, as she knew she had no option but to go back. At 4.45, we arrived and went to Y’s room. She changed, and we had time to sing a song together, to cheer her up, before dinner. As usual, she was distressed when we had to leave.

As I waited for X to document Y’s medication, I could see Y was not eating. All other residents were approached by staff to check that they were OK, except Y. She was also placed at a separate table, alone and far from anyone else, looking out the window into the dark. Dinner started at 5; Y ate one spoonful at 5.25, then set her spoon down again. Her meal looked burnt and sloppy: absolutely unappetising.

(X saw a soiled diaper in the trash; although this hadn’t been marked on her wall chart, the chart showed that Y had not defecated in the previous two days (i.e. since staff claimed she had diarrhoea). I include this detail just to illustrate again that neither Y’s health is maintained, nor are her records.)

We left at 5.30.

1/42

DAY 42

We arrived at 7.40pm. The residents (all except S) were seated at the dining table for supper; Y was seated at a separate table, alone, and positioned facing away from the others, out the window into the night. She was very happy to see us, laughing and hugging us both. We talked a little.

1 and 2 (staff) approached, telling us we had to go to Y’s room. Again we questioned why, and again were met with ‘It’s the rule, set by 15 (the facility manager)’. They began to pull away Y’s chair while she was still eating some bread; she spluttered in surprise and screamed in objection. X pointed this out to the staff. They waited until she had swallowed the bread, then pulled at the wheelchair again. Y was upset, gesturing that she wanted to stay and finish her cup of tea. Staff saw that we were supporting Y and were not going to try to make her change her mind. They walked away, had a hurried angry conversation together, then returned and roughly pulled the wheelchair backwards. Y shrieked, holding on to her teacup. They tried to force her to set it down or hand it to X, but she held onto it firmly. 1 then prised it with force from Y’s hand as 2 pulled the chair away, both miscalling X for not taking the cup from Y. They wheeled Y quickly into her room (she was very upset, crying loudly); the other residents were upset by Y’s treatment, we could see as we followed them. Y was unceremoniously deposited just out of reach of the table, crying. The door was locked behind us.

We sat with her, hugged her and tried to calm her. As she relaxed, she noticed two letters on the table. One envelope had already been opened. It was addressed to Y and Z at The Facility (this made us suspicious, as it seemed to be trying to drive home the point about Y’s new name plaque on her door, declaring Z lives there too). It contained a card from X’s cousin, who is closely involved with his sister in trying to prevent Y receiving care. The second envelope, marked from the municipal officials, was addressed to X. Y handed it to him, but he suggested she open it and they read it together, as it would be the minutes of the care planning meeting. She did, and, unfolding the letter, immediately spotted X’s name, pointed it out and smiled. She read through, X reading over her shoulder. For the first few seconds she seemed bemused, then she got distressed and cried. The letter included ‘minutes’ from the previous two care planning meetings, or, in actual fact, wildly inaccurate claims about what had been said and ‘agreed’. As Y read how The Facility was committed to providing her with appropriate support in mind and body 24/7, and how sedatives are necessary for her (without them, they claim her sleep at night is poor, and her daytime activity negatively affected, in direct contradiction of what I have seen), she was very angry and upset.

We put the letters to one side. X told Y that our friend A was coming today; she was happy, and wanted to see a picture of A. X opened his email to show her. He also noticed a message from another friend, in support of Y; as a thank-you, Y agreed they should send a photo and message in return. It cheered her up to pose for a photo and contribute to the message. She burst out singing (she does this when she is happy).

We started watching an Elvis song video on Youtube. 1 and 3 knocked, then came into the room. It was 8.30pm. They marched up to the wheelchair, told X that Y was going to bed now and tried to pull her away. Y clung to X’s hand strongly (his fingers turned purple at the tips!) and gestured that she wanted to watch for the rest of the song. The staff repeatedly tried to take her away, pulling the chair back (she kept her grip, pulling herself forward in the chair), moving direction (her flexibility was demonstrated as she twisted her arm behind and to the side to maintain her hold), scolding her and X, and eventually, at the end of the song, clamping on their ear protectors, prising Y’s hand from X’s, shoving her wheelchair into the bathroom, and telling us to ‘get out’.

We waited in the (empty and funereal) communal room from 8.35pm until 8.50pm. Y’s door was locked behind the staff as they emerged; 1 returned to open it. (I noticed in the meantime that all other doors were locked.) Y was in bed, and though she had been screaming and crying, she smiled to see us and hugged us both. She refused to let go of X’s hand again, as we sat and talked with her. She began to doze off after about 15 minutes, but her sleep was broken with kicking, screaming, shaking her fist and crying. From about 9.40pm, she seemed to be in a deeper sleep. Her breathing was very erratic again. She was lying flat on her back, despite the chesty cough. She showed symptoms of sleep apnea, i.e. she stopped breathing for long periods of time, then would gasp and wheeze a few breaths, quieten down and stop breathing again (repeated every minute or so). There is a lot of liquid in her airways, blocking her breathing.

We documented her medication, wished her goodnight and left. We saw all the doors were locked as we left at 10.30pm. From the car park, as S’s curtains were open, I could see her standing at her bedroom door, hitting it and shouting; she did not want to be locked in and could not open the door herself.

Today, the facility manager told us that The Facility have, for the past two years, done everything in their power to help Y have a good and healthy life. How the healthcare system allows this woman to get away with outright lies, I cannot understand. When residents give up their fight to survive in this place and die, she and her staff claim that the resident was old and died of natural causes. I believe one cannot claim that being driven to death by mistreatment, isolation, excessive sedation, enforced inactivity and repression of any stimulation, is a ‘natural cause’. For this reason, I am publicising the case and the issue across Europe and the world; perhaps this will illuminate to the country that change must be made. I thank you, my good readers, for reading and sharing this blog and thus playing an essential part. I am ever grateful.

1/43

DAY 43

I am still horrified as I write this long account. It is appalling to witness the dishonesty and abuse which is not nearly often enough challenged in this facility. And equally it is humbling to witness the bravery and selflessness of those who jeopardise their own well-being for the sake of standing up in support of a more vulnerable comrade. Kindness and cruelty.

We arrived at 2.40pm. All staff bar one were seated in the entrance hall having a meeting. Most residents (and one staff member) were having afternoon tea in the dining room, except R (we didn’t see him at all today) and Y. Y was in her room, in bed, alone, in the dark, sitting eating her snack. She was very happy to see all of us, especially A; she hugged him and didn’t want to let go for a long time. A spoke a few phrases in The Language Of The Country: she was impressed. Together they used an app for learning The Language. Y was really pleased to be involved there.

She wanted to get up, but didn’t want to let go of A’s hand, so she asked X to press the button for assistance. Staff took some time to come; when they did, Y looked very afraid. She wanted us to stay in the room, but we were told impolitely to get out. We waited in the communal room. T and S greeted us; W waved from her sentry post guarding her room. Y screamed and cried. Finally we were permitted back in to Y’s room. She was upset, and clung to X.

Today she was badly affected by Imovane, frustrated, upset, un-co-ordinated and slow to process her thoughts and actions.

We asked if she wanted to go out for some fresh air, but she could see it was raining and she didn’t really want to. She had just finished her afternoon tea when we arrived, but she realised we had not had any, so she offered us some chocolates, to celebrate A’s arrival. Y took the box from the refrigerator, and offered each of her guests a chocolate before checking that she had not missed anyone, and taking one herself.

She gestured behind her. We weren’t sure what she meant so we tried a few options. We tried putting the chocolates away: that wasn’t it. We offered to take her to the bathroom: that wasn’t it. A realised she was gesturing to the door, she wanted to go out, with the chocolates: she wanted to share them with the others, perhaps? We pushed her chair along the corridor- she was too confused to hold X’s hand and pull herself along today (effect of Imovane). We paused at the piano, where Y played a few thirds, then a perfect B flat minor chord; she was proud of herself, then instructed us to go on. She did not offer the box of chocolates to anyone; she seemed to have forgotten where we were and what we were doing (effect of Imovane). We ended up in the entrance hall, where we paused and talked. Y accidentally spilled the box over; she looked surprised and cross with herself for having lost co-ordination briefly (effect of Imovane). We went back into the corridor- she was pulling herself along by X’s hand again.

She wanted to watch TV, she gestured, so we went in to the communal room, and found an old film on one channel. We watched. About ten minutes in, I noticed 3 staff walk in single file down the corridor past Y’s room. Shortly after, facility manager (staff 15) and her sidekick, 14, walked over to us and told us we had to leave the communal room and go to Y’s room. X asked why; they said it’s the rule. A and I continued to ask why. Both women, who speak English well, spoke in The Language Of The Country (when I asked them to switch, they said in The Language, ‘No, you understand The Language very well’; when I asked again, they said ‘X can translate’). They repeated that this was the rule, that 15 had decided this rule for the present time, that the communal room was for staff and residents only, that residents were threatened by us, that residents did not want us there, that we were there to visit Y and so we must stay only in Y’s room. As they talked, Y was wheeled into her room. I remained in the corridor asking why. When they said I was only there to visit Y, I said I also wanted to see P, R, S, T U, V, W; no, the women interrupted, I was not their (i.e. the residents’) friend, they did not know me. I pointed out that if they asked these people, they would say I was their friend, their only visitor for the past six weeks, and often their confidant. After some continued pointless arguing, I said that 15 was telling lies if she said that I had no relationship with any resident besides Y. She said, ‘No, you are lying!’ (without qualifying the accusation). All this time she was also trying to close me into Y’s room, pushing the door against me with increasing pressure. I stood my ground, asking why they were shutting Y into her room, which they denied, and eventually they gave up and walked away. Several residents overheard. I returned to Y’s room to join the others at the table; Y was crying and distressed.

As we talked and she calmed down a little (she was still in very poor form today), I could overhear an interesting conversation out in the corridor (I had left the door open on purpose). I moved to the doorway to listen. T was asking a staff member why they had behaved as they did. She answered that we were breaking the rules, and added that we were reporters who were writing lies; T continued to object and ask why.

I was grateful he was being so brave and forthright.

At the table, we continued to talk and watched some music videos. We were joined by guests twice! (Y welcomed everyone, though she was at first uncomfortable when she could see a reflection in the dark window but the person had not yet come into her line of vision.) T came in ; he talked for a while, then I accompanied him back out to his preferred chair in the communal room. A little later, S came in to say hello too.

At 5pm, Y had been showing anxiety for a little while, and we realised she needed the bathroom. X brought her to the bathroom, and she rang for assistance. At 5.08 A asked a member of staff to come and help; he was told they would when available, as they were setting up for dinner. Eventually, at 5.13, two staff members came in. They were rude, telling us to get out as they clamped on ear protectors. Y screamed.

We sat outside in the corridor; we carefully avoided the dining room as residents were eating then and we respected their private mealtime together.

We were eventually allowed back in. Y was seated at her table, back to the door, staring out the window. One staff member said curtly that Y could come out to eat and we had to sit in her room and wait, or Y could stay in her room with us. We asked Y- she was keen to eat with us, and very keen to have pizza delivered for her too. Staff member 10 marched in and slammed a plate of dinner on the table in front of Y, with a spoon shoved in at one side. It looked utterly revolting. Y shrieked and pushed it away. 10 put it back in front of Y; she pushed it away again. X asked Y if she would like pizza instead, and she said yes again. We ordered some, cleared the table and sat down to share our meal, singing a psalm together first. Y ate well, eating three-quarters of a large pizza herself.

It was funny to watch her develop a technique; I cut a slice, she folded it in two lengthways, and folded the centre inwards, to make a tidy easy-to-eat piece. She laughed in delight that she had found a way to do it herself.

She poured herself a glass of milk (it took a few tries, as she kept forgetting what she was doing). S came in again when she had finished dinner; I coaxed her to sit with me, and shared my food with her. She was initially very nervous about eating with us, but quickly showed that she was glad, and she ate hungrily (a reflection on nutrition here, perhaps?). She thanked us and praised the food many times. She expressed happiness to meet A (she is normally withdrawn around new people), and invited all of us to come and visit her anytime we wanted.

Does this not contradict 15’s claim that none of the other residents wanted us around?

As S left, 10 was furious with us for not telling staff that she was with us.

I was humbled with gratitude that T and S were so brave to stand up and show the staff in this way that they supported us.

At 8pm, Y needed the toilet again. Staff answered her call for assistance quite quickly this time, but we were told that after she had been taken to the toilet, she would be put to bed.

Yes, Y was dozing off in her chair. But when we do activities she wakes up and engages. Putting her to bed instead does not help, in fact it worsens the problem. And Imovane is the cause of the original symptoms, not genuine tiredness.

Waiting outside in the communal room, everyone, I saw, had gone to their rooms, except T. All doors were closed and most were locked, except R’s; the door was ajar, and the room completely dark.

Why hadn’t he been out of his room anytime between 2.40 and 8 today? It is unlike him.

U had been locked outside. He tapped the window for attention. I let him in. His walker was indoors, he was outdoors with no warm layers or shoes, and he had been locked out. He was shivering and had wet feet when he came in; later, when he was warmly dressed, he found and thanked me.

At 8.25pm we were permitted back into the room. Y was in bed, the lights were low. She was flat on her back again, pillows either side, making her airways constricted by packing her in tightly. X documented her medication while A and I sat with her. She was quiet but awake. At 8.40 we wished her goodnight and left.

1/44

DAY 44

There are many characters involved in today’s events. Just to remind you, N-W are residents, 1-14 are staff, 15 is the facility manager, X is my friend, Y is his mother, the stroke victim who resides here, and Z is her husband and legal spokesperson.

We arrived at 7.30pm. Residents were having supper, and greeted us warmly (I was glad to see R- he wasn’t around yesterday). Staff said Y had gone to bed an hour and a half ago. We went into Y’s room- it was completely dark, she was in bed and very drugged, to the point of senselessness. She slowly recognised X and hugged him for a long time. She looked at me blankly when I greeted her, and waved me away with her hand; she screamed at A.

When she is very afraid she clings to X and does not want to see anyone else.

On her bedside table lay a plate and cup from a snack sometime earlier in the day; the tea cup was cold, so it wasn’t anytime recently. The room smelled of faeces, though the bathroom smelled fine; Y had been forced to defecate in bed again. She was very distressed and ashamed, and did not want visitors, bar X to comfort her. A and I stayed out of her view as X documented her medication. She was upset, kicking and screaming; X returned to her side.

She gestured discomfort and need to go to the bathroom. X pressed the button for assistance (Y was too out-of-it to do so herself). Within a few minutes, a member of staff arrived. X explained what Y had indicated, and expressed concern that Y was so drugged. The member of staff replied, ‘She’s not drugged, she’s just tired,’ before leaving in search of a colleague to help Y to the bathroom. As Y became more and more uncomfortable, we were anxious to help, so A and I went in search of staff; none were in this wing of the building. A finally saw 10 over in the opposite wing, through the window, talking to her colleague. Finally, after 15 minutes, 6 and 7 arrived with 10 and told us to leave the building. We objected, saying we would leave the room but not the building. The staff then refused to help Y until we left. We refused, saying it was the staff’s job to help Y, and that we would not leave until we were sure she was being taken care of. Staff refused to communicate in English, though all three of them can, and 7 rang 15, the facility manager.

X went to help a resident, U, who had asked him for help with a matter concerning his cell phone. A and I stayed in the corridor outside Y’s room, where staff continued to harass us to leave, and refused to communicate. After 5 minutes, Y was screaming in distress and discomfort. A explained this to staff, who looked the other way, ignoring us.

I called a friend (an expert in stroke care) for advice whether what the staff were doing was legal, as I wanted to check before I called the police. He advised against contacting the police, expressing doubt that this could actually be happening, assuming I was being melodramatic. He reluctantly agreed to speak to a staff member in The Language Of The Country to find out why they were refusing to take Y to the bathroom, but all the staff members I asked left.

Several other members of staff appeared to be taking residents away from us against the residents’ will; T, who had returned my gesture of ‘this is crazy’, was locked in his room, for example, and all the other bedrooms were locked too. S refused to move, sitting in a chair in the middle of the corridor. When I knelt beside her, she expressed understanding and horror at what was happening, took both my hands, and patted them.

This was the first time she had comforted me, not the other way round; I was touched.

I saw R having a coughing fit, turning red, and white liquid foaming round his mouth. I asked staff to help him, whether they were going to help Y or not; three staff members walked away from him, but 10 went over to him. I was angry and asked staff to do their job. 7 replied this was not his problem. 15 appeared and we continued to have the ‘get out now’/’we’re not leaving until we can see Y is safe’ argument. She tried to physically threaten me: she blocked my path with her arms and pushed my chest backwards, telling me to get out; she stood so close when hissing ‘get out now’ at me that she was standing on my foot; she brought her face almost touching mine. She spoke to both of us in The Language Of The Country, though neither of us can speak this language. She eventually conceded to talk in English when A said he had decided to take a couple of months off work to help X and Y. She argued that residents felt threatened by us because they didn’t know us, and that as facility manager, she had to take care of everyone’s concerns.

Let us think. Looking from one room to the next, there’s S (who is close to me), then Q’s room (she always waved to us), then Y, then T (who enjoys our company), then P (same), then U (who is very friendly, speaks in English to me, and had just asked X to help him fix his cell phone), then R (I know I am the only person he talks to here), then W (a long-standing friend of X and Y, who always greets me too), then N (a very close friend of Y and V, who has, until Z threatened her, stood up for Y and objected to her treatment), and finally V. These are all the residents who see us, as they live in this part of the building. Which of those is the facility manager claiming is afraid of us?

I continued to point out that Y was not being attended to, and was that not her job? 15 said that it was she who made the rules here, and we had to obey them. We saw X and U moving out to the entrance lobby of the building; it later transpired that 15 had forced them out of U’s room, whence U had called X to help (i.e. against the resident’s express wishes, 15 forced him and his invitee to leave his private room). Finally, over 30 minutes after pressing the bell for assistance, Y was attended too. When staff emerged from her room carrying a soiled diaper, A and I agreed to leave.

As we walked, noticing again that all the residents’ rooms were locked, V opened her door and tried to come out; 6 and 15 pushed her back inside and locked the door again, telling her that her medication was coming soon (I called, ‘bye V, good night’, aware that she was coming out to check we were OK, not looking for her medication). We went outside to join X, who was finishing fixing U’s phone; 15 had promised to continue our conversation in English. When U had wished us goodnight and left, A asked 15 again, what she would do if she saw her own mother lying in bed, needing the bathroom and being refused, would she stay or go. After a long meandering monologue on X bringing many friends to visit and disrupting the routine they had crafted especially for Y, on how anxious Z is that Y is well, on how the staff have for two years done everything they can to make Y happy and healthy, 15 answered the question: yes, she would walk away. A pointed out that in his 2 days’ experience, no care plan was kept to, and the treatment he had seen was unacceptable. 15 said it was X’s fault, and ours by association, that he made the staff’s lives too difficult, that they were so frustrated with X always arguing with them that they could no longer do their job. (She now said the staff objected to us; earlier she had claimed the residents objected.) We decided that this was going nowhere, so we parted company, and 15 reluctantly agreed to A’s suggestion that they meet again and discuss things in a couple of weeks. We left at 9.45pm.

I am concerned for Y’s and the other residents’ safety. 15 can easily put any of their lives at risk directly (e.g. by giving them inappropriate medication and leaving them lying in such a way where they can’t breathe or help themselves), while locking them in their sound-proofed room, so their screams for help cannot be heard; she can then claim that they are old so they died of natural causes, and she can get away with that. In our case, she is even blaming X’s presence for the staff not being able to do their job, and so if Y dies, she will most likely find some way to blame X, and he will be punished for it. This is not unfounded: she has previously accused X of ‘giving Y a second stroke’ when she had in fact given Y potentially lethal medication and refused X visiting access while it was working, leaving Y helpless, in agony and abandoned.

The system here will not challenge her claims, her lies, so we have to.

1/45

DAY 45

I will post today’s journal in two installments again. Today we can see Z’s confusion in his logic behind his statements regarding Y, which raises the question whether he is the best candidate to act as her guardian and legal spokesperson.

We arrived at 3pm; T, R and U greeted us warmly. We met Z leaving Y’s room; he said Y had been too tired to get up that morning (staff said the opposite, that she had been up), but that now he had taken her for a walk around the village, and now she was very happy. When X said we had not stayed to wish Y goodnight last night, Z changed story, saying Y had been fine and in bright mood all day, the sedatives had no side effects whatsoever, and now she was tired after being out in the fresh air.

He seemed unsure whether Y was tired or awake, bright or low in mood.

He approached A, demanding, ‘Who are you?’, then, ‘From where?’, before laughing loudly and walking away. Two staff were in Y’s room, putting Y to bed. One left, carrying soiled diapers, while the other (10) stayed for a long time, then came out to say Y was asleep.

Meanwhile we had been talking to S, who approached us. She was very happy, smiling and talkative; it was lovely to see her being socially confident. She asked us if there was anything she could do to help us, then flung her arms wide to hug us all together.

We went into the room. 10 tried to make us leave. She clamped her hands on my upper arms and tried to steer me away; I said, ‘Don’t touch me,’ and she immediately let go, saying, ‘I don’t, I don’t’. She approached X, accusing him of waking Y (Y had been awake when we came in, and happy to see X). She was angry, and threatened, ‘We are taking notes on you. Things are going to be tough for you.’ She left.

This is an explicit threat from a staff member to a resident’s relative. Is this not illegal?

Y was drugged senseless.

We documented Y’s medication and sat with her as she dozed off, sobbing and flailing her arm. She fell asleep, face buried in a pillow, hand lying hooked over the side of the bed. We left at 4pm.

1/45i

We returned at 5 to join Y for dinner. Residents were eating silently in the communal area, while Y was alone, in bed, in the same position as when we had left her, and now her hand was marked from the pressure of the bed frame, and very cold. 8 (staff) came into the room and asked us to leave. She explained that Y needed her sleep, she was almost 100 years old. 8 also would not answer whether or when Y would eat (she had missed  dinner and supper now). We decided it would be best for Y if we stayed and ate when she was ready- this would make her feel (1) safe and (2) happy. S came into the room to visit us, sat down and chatted. 8 came in after a couple of minutes and told S she must go to her room. As she led S out, S told us she’d be back later; 8 closed the door behind them.

At 6pm, 8 returned and said she would be back again in an hour to put Y to bed. We had been sitting quietly with her in the room. X pointed out that Y hadn’t eaten since lunchtime, and asked whether she would be up at all then. 8 laughed and said Y was tired, before she left. We decided X should ask Y if she wanted to eat before being put to bed, but Y was still too out-of-it to respond. At 6.35pm, 8 returned to announce that Y would be put to bed in 20 minutes. X asked about food for Y; 8 said staff would feed her a snack. X said we had brought food, so we would stay and eat with her when she was ready; 8 refused, saying staff wanted to be alone with Y for her snack. X said they could have time alone with her when they put her to bed; 8 said no. X said again that we would stay and eat with her; 8 said no again, claiming it could be any time, even midnight.

Where is the logic in either this argument, or the argument that staff craved her company during her snacktime?

At 7pm, 6 and 8 arrived to put Y to bed. We were sent out. In the communal room, residents were eating supper. We greeted them, but were chased away to the foyer of the building by 10. U wanted to be with us to share supper, so he picked up his plate and cup, stood up, and walked with us to the foyer.

This was a very brave and supportive act.

The staff were not keen to allow him to go; he mocked them and offered them his spat-out tobacco as a gift. He told us as we walked that he was shaking with anger to hear facility manager, 15, speak to us last night, and at how the staff treat us; he wondered if the staff had any education to do their job. He asked me in perfect English whether we had staff this incompetent in Ireland; I had to say I hadn’t met any. I asked him if I could take notes of what he was saying as he talked; he agreed enthusiastically, as long as I would include that he plays accordion and is a former cross-country skier.

Dutifully recorded.

He was cheerful, cracking jokes, singing, dancing, holding the doors for us (he was careful to close them after us, saying the staff would be after him if he didn’t do it properly), smuggling out a bottle of beer from his room for us to share, offering us all tobacco. He also informed us that he is physically forced to take sleeping pills against his will, but that he cheats the staff, hiding the pills under his tongue and spitting them out after.

He is physically forced to take sedatives, against his will. This place needs to be closed down.

6 had told us that she would let us know when Y’s room was open to us again, but warned that it could be up to ninety minutes; we said we would wait, no matter how late. She finally came at 7.45pm, and said that the room was accessible, but Y hadn’t eaten because she was deeply asleep and the staff ‘hadn’t been able to wake her’. She claimed staff would check up on her regularly al night and feed her a snack as soon as she woke up properly. We went into the room at 7.50pm. Y was awake and began to brighten up more and more in our company, though very gradually. She pushed the buttons on the control panel to raise herself up to sitting in bed. At 8.15pm, we had dinner together (I had brought home-cooked food). 6 had been in twice already to check on her (so she was keeping to her word, at least for show, but still I was appreciative), and now came in a third time, expressing satisfaction that Y had woken up and was eating, before she wished us goodnight and left. (Y was silent, closed her eyes and feigned sleep when 6 was in the room each time, and was awake and communicative with us the rest of the time.) She found, in her drugged state, that feeding herself was too difficult to co-ordinate, so she ate from X’s plate with her fingers, or he fed her. Y ate very well- two bowls of pasta with meat and vegetables- and looked better for it; she must have been hungry after 8 hours without food or drink. She became more tired after dinner. At 9.30pm, she lowered her bed back down to lying to sleep. She relaxed, seeming to feel safe and content- there was no screaming or crying. She was calm watching A and I wash up after dinner.

Maybe a familiar task was comforting to see.

On a trip to the bathroom, I saw U was still where we had left him in the foyer, and S was hunched up in a blanket in the dark dining room, in front of the TV, staring at it, talking to herself and shivering. People here are lonely.

Eventually she fell asleep, her breathing sounding at least regular, and her sobbing was much reduced. We left at 10.15pm.

1/46

DAY 46

A and I visited Y briefly between 3.10 and 3.30 pm. I saw two of Y’s friends leaving the car park as we arrived; Y must have had visitors today.

We greeted R, S and T on our way in- they were happy to see us. We knocked on Y’s door and went in. Z was at the table with Y; he looked very surprised to see us, and not X too. Y was really happy, she smiled, laughed, hugged and kissed us both. She seemed very well today, her eyes were bright, she was playful and communicative. Z conversed with us in a civil manner. We left after just a short time; Z turned Y’s wheelchair around so she could wave goodbye as we left.

It was really nice that she was comfortable around us, that she looked like she was having a good day, and that she clearly enjoyed company.

1/47

DAY 47

We arrived at 2.55pm. We passed S in the corridor; she was looking very depressed, shaking her head. I sat beside her, hugged her and asked what was wrong; she just said she was sad. Y was locked into her room; when we knocked, Z eventually answered. He and Y were sitting at the table having afternoon tea (I noticed he had been served by the staff too, although we are not served when we are with Y at tea time). Y was very happy to see us all; she was vague and low in energy today otherwise. We talked together as I made us tea, and we sat with them, Y careful to ensure we were all served biscuits, offering me first.

A asked, after another of Y’s coughing fits, whether her doctor had heard her cough. X translated the question to Z, who talked evasively at length; we finally deduced ‘no’ was the answer. Dr … works on Mondays and Tuesdays, so Z could bring it up with him. Z kept looking at his watch as we talked; he decided to leave shortly after.

We watched some Youtube music videos and movie clips with Y. She disliked a couple of Halloween references, covering her eyes with her hand. She had regular coughing fits, shouting in discomfort, exhaustion and frustration after each; she kept a number of serviettes tucked into her (inactive) right hand to use when she had to cough. She lost interest in Youtube after a while, her chin dropped to her chest, and she didn’t want to do anything (we suggested games, cards, singing, photos, but she shook her head). We sat quietly for a little while, then she assented to X putting on a CD. She was dozing off, occasionally singing along for a short time, but mostly dropping her head and disengaging from anything. She liked when X played along quietly on the guitar to some songs, when we danced to the music, and when I tapped along to the timpani rhythms. I showed her some piano finger exercises on the table-top, and she laughed, pointed, recognised, and tried to imitate. The CD ended, and we offered her a few to choose the next. She closed her eyes and dropped her head, disconnecting: she didn’t want to  make a decision. After a short nap, she brightened up, and gave X her right hand to massage.

At 5.05pm, 8 came in, and told X brusquely that Y was going for dinner now. She faced Y then and said loudly that it was dinnertime. Y smiled and reached out to her; 8 thrust Y’s outstretched arm down to restrain her. X began to explain to Y that we would leave and come back later, but he had just got as far as addressing her when 8 pulled the chair away, pulling Y’s hand out of X’s, and quickly taking her out of the room. We documented her medication; we could hear Y’s cries from the dining room through the open door. X noticed and pointed out that a full outfit lay in the laundry bin, smelling strongly of faeces; she had had to defecate in her bed again. The wall chart documented that she had been taken to the bathroom for this. We left at 5.25pm.

We returned at 7.40pm. A resident in the dementia wing, on the opposing wing of the building, called us over. He greeted us politely, then talked incomprehensibly to us until 4 (staff) approached, demanding that he come away from us. I saw, on our way, R trying to lie down on a sofa in the communal room, pulling the tablecloth, which bore a lighted candle, around precariously as he did. No staff were anywhere to be seen. We went to Y’s room; it was locked (as were all the other rooms). I searched and found 8, excused myself, and asked if she could open Y’s room. She reluctantly followed me to the door of the room, where she told X curtly that Y was asleep and we shouldn’t wake her. X pointed out that we should say goodnight to her, as we had told her we were coming back. 8 did not want to allow us in but eventually unlocked the door, gesturing that she would check on Y first, and only X could come in, not A or I. We all walked in together. She glanced at the bed, affirmed that Y was ‘asleep’, and tried to block my path with her arms outspread. I asked what she was doing and she dropped her arms. I walked over to see for myself; Y’s eyes fluttered open and closed. X went to wish Y goodnight as A and I stood back; 8 stayed in the room, walking to and fro, watching all of us, talking loudly, her cell phone making loud beeps. We left after X had said goodnight, 8 repeating herself all the while, ‘She’s sleeping, come back tomorrow’. As we left, X and A walked first; 8 followed me so closely that she walked into me, and loudly objected as though I had struck her. I apologised instinctively, though I had no responsibility for it.

What is this about? It seems strange behaviour.

Outside the room, 8 showily closed and locked Y’s door again, explaining ‘They are so worried, all the others, so she must be left alone’.

What others? What does she mean?

X pointed out that she couldn’t hear if Y cried out when the door was closed. ‘Yes. Oh yes, we will,’ was 8’s response, followed by ‘We’re walking past all the time. Don’t worry.’ X pointed out the door is sound-proofed; 8 laughed, ‘No! Oh no, we hear Y.’ X said that he had been here before, heard Y cry out from her closed room, and staff had claimed they didn’t hear her. 8 said, ‘Aha… don’t worry. Now she is sleeping so well.’

We left at 7.50; S was screaming from her locked room, we heard from the car park.

I have noticed that over the past week, we have been watched as we approach or leave the building, and everywhere we stand or walk inside, by at least two staff, often more.

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DAY 48

Today’s post will be in two installments. There’s a bit too much crazy to absorb in one sitting.

A and I called in to say good morning to Y, about 10.15am. She was up, in her wheelchair, watching TV in the communal room. She had had a shower, and her hair was in rollers. She was very happy to see us, and talked to us while holding my hand. We asked her if she wanted to go to gymnastics later today; she shook her head firmly. Staff approached, asking us discourteously to go to Y’s room. We said we would ask Y if she wanted to stay and watch TV, or come into the room with us. She smiled at us, so we weren’t sure if she had understood; we asked 9 (staff) to ask Y in The Language Of The Country. She did talk to Y, but posed it not as a question, rather as a statement, she would watch TV alone or go to her room with us. Y gestured towards the TV, so we said goodbye, and we would be back after lunch with X. She was cheerful. It was about 10.30am. As we left, I hugged S good morning, and she was very happy. We also greeted U, who smiled and invited us to his room to talk. We were watched by staff as we left.

X, A and I returned at 3.35pm. All the doors were locked.

Why? The reason for locking them at night, staff claim, is so people don’t wander into another’s room at night. Why during the day then?

We knocked on Y’s locked door- no answer. We asked 1 to open it. When she did we saw Y and Z at the table. Y was really happy to see X, she clung to him for a long time. She was also happy to see A and I, laughing and reaching out to us. 2 and 4 came in, saying to Z, ‘you called?’ He nodded; they had clearly made a previous arrangement. Y was going to be put to bed. I asked why; Z answered that they had been for a long walk, one hour, and then been sitting up, that dinner was at 5pm and he thought it was best for Y that she rest now for the next hour. Z then left. We refused to leave, pointing out that Y was clearly awake and alert, and wanted to stay up with us. 4 scolded her, and told us at length that this was Z’s decision, and it was for medical reasons that Y, at 92, needed rest now, whether she wanted it or not. 2 wandered off. 1 joined us then, asking what was going on. She then accused X of making Y scream by being there and trying to force her to stay up out of bed.

Absurd!

1 and 4 then told us to take our jackets, we were not allowed back in. We still refused to go. 1 and 4 reluctantly left, 4 slamming the bathroom and main doors as she left.

This is hardly befitting behaviour from an adult.

Y was victorious when the staff left, giggling and waving her hand. X implied that the problem was now gone for the present moment, and we could hang out together. We sat at the table; Y was very happy and burst into song. We were thinking of activities we could do together (Y had just expressed that she didn’t want to play cards), when 1 and 4 returned. They immediately began to argue with us, saying again that Z had made a medical decision for Y.

The authority who appointed Z to this role has told me explicitly that he cannot do this (i.e. he cannot make a medical decision for Y, that this is Y’s doctor’s job), so Z is misusing his position of power.

We asked whether Z had done what we had asked, and ensured that Dr …, Y’s GP, had seen her on his round today, to analyse her cough; no, he had not. The two staff pulled the wheelchair over to the bedside and began to operate the hoist, handling Y roughly as they did. She screamed, lashed out at the staff, and reached for us. We refused to leave again, but were eventually forced to, so we said we would call the facility manager, 15, from outside the room.

A did so, reporting to the facility manager what her staff were doing. She referred him to the care plan drawn up for Y, so A said he would look at it and they could discuss tomorrow.

We returned to Y’s door (locked). Y was screaming loudly and painfully; 4 came out and said again that we were not allowed to be there, in the corridor, and that we were not allowed to go back in to see Y. When 1 left the room (she waited in there until Y’s screams were quieter, so she could claim she calmed Y after our disturbance), we asked her again why Y was forced to bed when she was not tired.

1 referred to her previous work at a stroke rehab unit, explaining that stimulation or training must be followed by rest. Overstimulation would damage Y’s brain, and we are over-stimulating for her. While what she first stated was correct, that training needs to be followed with rest to be effective and not damaging, when we asked about what training she had done today to merit so many hours in bed, 1 said Y had had physical therapy on her right arm and leg.

When we later documented Y’s medication and her wall chart, it showed that Y had not had physical therapy today. 1 lied.

I asked if she had had any brain training or intellectually-stimulating activities, and 1 said yes, but would not say what. We expressed concern, following recent experience, that Y would be woken up for dinner. 1 first said yes, that of course she would, then said that if Y was awake, she would be brought out to dinner, but if she was asleep, she would not be woken, because (1 claimed) ‘the brain has to rest, you must never wake a stroke patient’. We thanked 1 for explaining.

Meanwhile, V had approached us to greet us and show support. When we went in at last, Y’s room was dark, and the door was locked behind us. Y was awake but was clearly disappointed in us that we had left her. She was sullen and uncommunicative. We left and walked to the door of the building.

S approached us as we did, asking for help. We realised she needed a change of clothes, as she had not been taken to the bathroom on time; also, her door was locked and she could not get into her own room. I suggested we find some staff to help her.

She had asked me, and us, for help, not the staff, and she was a little upset when I said I would ask a staff member to help, as she does not trust them.

A brought 1 over. S tugged at my hand anxiously. She told 1 clearly that she wanted us to open her door for her; 1 said ‘they can open the door themselves, they can go out by themselves’ (had she misunderstood or was she purposefully trying to confuse/belittle S?). S protested loudly, ‘I understand that myself! Stupid I am not!’ 1 replied, ‘No, I know that too. What did you want?’ S repeated herself, ‘That is what I want, that they can open the door (of my room) so I can get in.’ 1 tried to interrupt, but S cut across her, ‘But you never shut up so I can’t finish my sentence!’ 16 approached and asked what was going on; 1 said, ‘S wants to go out.’ S said, ‘No, if you just stand completely still and be quiet, I want them (i.e. us) to open the door so I can go inside and get some clothes that are dry and clean.’ 1, nodding, said, ‘They are in your room…’ X tried to clarify that S wanted to go into her room. 16 said, ‘Yes, do you want me to show you?’ (assuming S was confused, as she had been moved to a new room in the past couple of days); S answered very strongly, ‘No, I don’t want you to do that. No, you should not show me there, because you do not belong there!’ 1 and 16 babbled some more irrelevant nonsense at S as they steered her away from us; S turned back to me, tapping her head and saying, ‘These people are crazy!’ 16 approached X and muttered, ‘If you just leave…’ We left at 4.15pm.

The staff have no respect for the residents, treating them as though they are stupid. I was extremely impressed that S stood up for herself in this way.

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We returned at 7.35pm. Some residents were having supper at the table; rooms were all locked, some doors ajar. We greeted the residents, and were invited for coffee to S’s, V’s and U’s rooms. We went to Y’s room- locked- and knocked on the door. We waited for over 5 minutes before U said that there were two staff members in there with her.

Why hadn’t they answered when we knocked?

We asked staff member 10 as she passed to open the door; she ignored us and refused to make eye contact. 2 finally emerged from the room, looking for a colleague to help her change Y’s diaper; she returned after five minutes with 4. V approached us, not looking so well, and expressing concern for Y and for X, seeing her mistreatment. Meanwhile, T had brought out his harmonica and was playing in the communal room, shyly facing the other way as he played; he was embarrassed that I had complimented his playing earlier, at supper. X asked V to dance, and they waltzed down the corridor.

When we were finally allowed in, the room was dark, and Y looked white and afraid. A asked if she wanted more lights on; Y closed her eyes and dropped her head, not wanting to make a decision. We sat with her. She was coughing a lot, choking, turning red in the face, then sobbing and loaning in discomfort. Her breathing was wheezy and laboured. She dozed fitfully, spluttering awake every few minutes. She seemed to be trying to open her eyes, but with great difficulty; she still observed every time one of us moved. At one point I heard staff tiptoe past and whisper to each other just outside Y’s door. We left at 8.50, when Y seemed calmer.

It is claimed by the Facility Manager that the residents are intimidated by our presence. That seems highly unlikely, given their actions.

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DAY 49

Another long day, posted in two installments. Note the appearance of 15 towards the end; an interesting development occurs in the next post.

A and I arrived to say good morning at 10.15am. Y’s door and all the others were locked. We knocked: no answer. 9 approached and said that 2 was in there with Y; she went in (I saw the room was dark and Y was in bed, 2 standing at the foot of the bed) to ask when Y would be ready. When she returned, she said thirty minutes, so we said we’d be back later. (We assumed Y was getting up now; later, her wall chart read that she had not been offered KP, which, according to her care plan, happens every weekday at 10am.)

S was at the dining table eating breakfast alone when we arrived- why alone and why so late? She also seemed confused today, taking a moment to recognise me when I greeted her, and forgetting who A was. Strange that the day after she stands up to staff she seems to be suffering.

A, X and I returned at 11.40 to greet Y before she had lunch at 12. We knocked Y’s door and went in; 1 was in there but left as we arrived (I’m not sure what she had been doing). Y was in her wheelchair at the table in a dark room. The room smelled very strongly of faeces; it seemed that Y had defecated and not yet been changed. She was very upset, sobbing, clinging to X and hiding her face in his chest. She did not want to see A or I; she was ashamed and very distressed at having had to defecate in her wheelchair, and must have been uncomfortable sitting in it. She clung to X still, so A and I went in search of staff to change Y.

A went to the opposite wing of the building, and found 1, who came straight away. I was less fortunate: first, 2 nodded and said ‘OK’ when I said what the problem was, then she went into the office, closed the door and sat down in an armchair; second, 10, in the kitchen, gestured angrily that she was busy making lunch, and then also that she didn’t speak any English (she told me, in English). I consulted X and returned to ask her in her own language to help Y, to which she replied in this language, ‘Y has already been to the toilet today’.

Not only is this completely irrelevant, but Y’s wall chart said she had not been. What is the point of this document if it is inaccurate or not updated?

When 1 came in, she asked Y, ‘What’s the problem?’

(Y was sitting in her wheelchair inside the bathroom, smelling strongly of faeces, crying. Was 1 purposefully being obtuse?)

Y shrieked and waved her away as X explained what was needed; 1 moved the wheelchair out to the hoist to begin to transfer Y to the commode. All the while, Y clung firmly to X’s hand, crying and shrieking. She pointed to the table, wanting us to stay in the room. 1 refused. I asked X if A and I should leave, and he could stay to calm Y; 1 refused, scoffing that grown-up sons do not assist their mothers to the toilet, it is not fair for Y’s privacy and ‘integrity’. X pointed out that he has no desire so to do, but he would if Y needed him to in order for her to feel safe.

Is it preferable for Y to be assisted to the bathroom by staff members she does not trust, who frighten and mistreat her, or by her own son?

Distracted, Y then pointed at the guitar, which had again been turned so its strings were being damaged (Y, a musician, is very careful with instruments). X turned it round again and she was satisfied.

Y was still very anxious to have X in the room, and showed clear fear of 1. 1 then refused to take Y to the bathroom as long as X was there. We left and sat outside in the corridor for 15 minutes. 1 and 2 left the room, carrying a number of soiled diapers in a trash bag. We went in. Y was at the table, and still smelled of faeces (we were not sure if her clothes were changed, though her soiled underwear was in the laundry basket). 2 brought in Y’s lunch (it was 12.20) and set it on the table. Y objected, as X explained that she could eat out in the communal room and we would leave, or she could eat in her room and we would keep her company. She pushed the tray away twice, clearly saying she did not want that food, so 2 left, taking it away. We asked Y if she wanted to go out for lunch. She smiled and pushed her wheelchair away from the table: a clear yes. A helped her dress in outdoor clothes, which caused a lot of laughter. (Y laughed though it started her coughing, very loudly and painfully, with a large quantity of dense white mucous coming from her mouth.) When she was fully dressed, we left the room, Y pulling herself along by X’s hand. The other residents had finished, and greeted us as we left; Y looked pleased. S was steered away from me when I hugged her, by two staff members.

We walked down to the pizzeria. Y was very happy in company, laughing and singing. We ordered and ate; Y chatted with the people working there. She served herself salad, chinked her glass against ours at the beginning of the meal, and ate her fill. She was concerned that everyone got enough to eat, offering us more, and putting slices of her pizza on X’s plate. At the end of the meal, she wanted us to pack up the leftovers to take home. We did so, and we left, Y thanking the chef and holding his hand as we said goodbye. Outside, we asked if she wanted to go for a walk or if she wanted to use the bathroom. She would not make a decision, but her gestures suggested she needed the bathroom, so we began to walk back (we later realised she did not, she was just still uncomfortable, having not been cleaned properly earlier). We stopped off at the music store (she enjoyed looking at the instruments), then went to the store and cafe for tea. Y was cheerful, interacting with locals there, especially the owner’s daughter. She helped serve the tea, and was absorbed watching A play a logic puzzle. She was still coughing a lot (I hadn’t noticed it so much outside, so it seems to be worse when she comes into warm air after being outside). She was mostly quietly content, but she began to sob a little as she got tired and was still uncomfortable: about 3.30. We went outside. We asked if she wanted to go home: she said no. Did she need the bathroom? Yes. Did she want to go home? No. Was she cold? Yes. Did she want to go home? No. We could see she did not want to return, but felt we had no other choice, and it was getting dark and very cold. She cried and shrieked as we approached the building. She opened the doors herself, and pulled herself along the corridor using the handrail.

We went to her room. Y took off her coat, etc, and we sat at the table. 1 came in to ask Y if she wanted her afternoon tea, but Y shrieked and waved her away. When 1 left, Y laughed as the door closed. We thanked her for a walk, lunch and company; she was very pleased. We asked if she would like to come out to our house sometime for dinner with us, and Z could come too; she loved this suggestion. She also enthusiastically nodded when we asked if perhaps I could cook food and bring it in for us to eat together again.

X picked up the guitar and we sang several songs together, the lyrics (in The Language Of The Country) on the tablet so A and I could join in; Y enjoyed giving us a language lesson. At 5pm, we noticed the time, and decided to wait and see when staff would come in to take Y for dinner. After another two songs, at 5.09pm, we brought Y out (no staff came). When we first explained that we would have to leave as she ate dinner, she did not scream in objection as usual, she just looked very saddened and dropped her head. As we brought her to the table and wished her a good meal, we saw the facility manager had just arrived, and she smiled and greeted us. We documented Y’s medication (no physical therapy and no toilet today) and left at 5.30.

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We returned at 8. U invited us to his room for supper, and S also greeted us warmly, laughing with happiness that we had returned. Y was in bed, and distressed; she only wanted to see X. The room was dark, only the bed lamp was on, and Y cried and clung to X, finally gesturing for him to sit beside her and hold her hand. S knocked on the door; I answered and explained that Y was in bed. She said OK, thanked me for answering the door, and saying she just wanted to wish us goodnight, before she waved and walked to her room. X stayed with Y then, but as A and I were disturbing her, we went to U’s room, as invited. X later reported that Y fell asleep eventually, but her breathing was very bad, and he was worried so he stayed. Two staff entered after 9.30, talking loudly. One realised they were too loud, she apologised to X and tried to quieten the other, who then purposefully talked louder (bustling around Y’s private room late at night).

U was very hospitable, and happy to have us there (he hugged us and called us his best friends). Over supper, he told us many of his interests, showed us pictures of his extended family, told us of his stroke and rehabilitation, asked many questions about us and about Y. We talked at length in a mix of English and The Language Of The Country, and for the most part understood each other. We tried to help fix his stereo and to charge his cell phone. He asked for a contact number for us, and gave us his; I said he should ring us any time he felt it was an emergency and we could help him. He said that he had had a bad cough (he is prone to lung infections) for five days but the staff refused him a doctor or medicine. He expressed strong dislike for the staff and their methods, checking out his door every few minutes, and if a staff member had passed, he shook his fist at them. When he was tired, we said we would leave, and X would be in to say goodnight to him.

We went back to Y’s room to tell X we would wait in the lobby for him; as we walked back out to the lobby, The same staff were outside U’s room, one asking what the hell we had been doing in there. We left. X joined us at 9.45. He had gone into U’s room to say goodnight, which U was very happy about. He had said that 15 had been in earlier, between 5 and 6 pm (as we had seen at dinner), and he had been very surprised to see her be very nice and polite to him. She had said that the municipality would organise and pay for all his belongings to be brought from his former residence tomorrow (they had previously refused, so U had asked us, as we had a car, to help him out by collecting it, which we had agreed to do). She followed this with trying to pressure him into stating that we were harassing him. He stood up to her, saying no, quite the opposite, he enjoyed our company, he enjoyed practising English, and that we were, unlike the staff, sane!

I can only imagine 15’s response. But if she was here today to try to get evidence from residents that we were a problem in order to report us to police for harassment, I am curious; coincidentally, today I posted on the blog about the fact that all the residents appreciate our company.

At 9.50pm, we left the building.

In addition to my previous comment, it is surprising how frequently little things change at The Facility when I mention them on this blog. I am glad that the staff seem to be informed of what I write. Perhaps they may change their behaviour accordingly, although I suspect that is wishful thinking. Perhaps I could just take this opportunity to remind them of their legal obligation, as healthcare professionals in this country, to report mistreatment of patients in their workplace if they see it, so it can be addressed; it is illegal as well as unethical for them to ignore it. Or perhaps, reader, I can remind you that any comments you write here will also be seen by the staff. Have you anything to say to them?

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DAY 50

This was one of the most traumatic days I have seen Y experience. It is distressing to even write this, so again, this post will be in two installments. Today, we see Y being forced to bed against her will twice, at the request of her husband and legal spokesperson.

A and I went to say good morning to Y at 11.25am. She was still in bed, and the room had no lights on (the blinds were open but the windows do not face the sun). She was quiet and vague, drifting off occasionally as we talked to her. She greeted us warmly, and was happy to talk with us, holding my hand with her left, A holding her right hand. We had brought some chocolate, which she enjoyed (had she been up for breakfast or morning coffee? She was dressed and lying on top of the bed under a thin rug, not under the quilts, so she probably had been taken up, but put back a short while later). We asked Y if she wanted to get up, but she didn’t express a decision. We talked to her; she closed her eyes if we spoke too much English, so we adjusted the conversation accordingly. I phoned X to say I wanted to stay with Y until I was sure she would be brought out of her room for lunch; Y spoke to X at length, answering his questions, listening to his news, and passing me the phone back when he asked her to. She was happy, laughing, kissing and tugging my hair gently, when I passed on a hug that X had sent her. We asked Y at 11.50 whether she wanted to get up for lunch; she threw aside her blanket and tried to hurl her left leg over the side of the bed. I explained, in a broken attempt at The Language Of The Country, that she needed to press the button for assistance. I dug it out (from under her sleeve, halfway down her forearm and inverted, so she could not have reached it herself), and held it still so she could press the button. Within 2 minutes, 6 and 15 (the facility manager) arrived. Y screamed and looked terrified. 15 brushed me aside and took Y’s hand from me, talking softly to her; Y responded warmly, laughing and reaching out to 15. 15 was just beginning to explain to Y that she was probably too tired to get up when I interrupted, to tell both staff that Y had expressed a wish to be taken up for lunch. Y was very anxious that we stayed with her; she shrieked, reached for us, grabbed my hand and tried to pull herself up. A asked 15 about Y’s cough and whether anyone had seen to it yet; 15 claimed ‘Y had a cough before she got here (two years ago?), and there was nothing the doctor could do about it, they had tried and tried.’ (A questioned this and brought up a topic he had been reading about, about stroke victims with difficulty swallowing who get liquid in their lungs and can thus develop inflammation. 15 didn’t respond.) We repeated to Y that we would return after lunch with X, and she calmed down after some time; we kissed and hugged her, said ‘see you later’ and returned her wave as we left the room.

Other residents at the dinner table greeted us warmly as we left, with smiles and hugs. How can 15 claim they are afraid of us?

We returned at 3.05pm to find Y’s room empty, and Z’s jacket on the coat hook in her room. Had they gone for a walk? All the staff we asked said they had, so we looked around in the building and found Y and Z in the far wing of The Facility. Y was very happy to see X but wary of A and I. I realised I had taken off my shoes in the other wing of the building, as per regulation, and Y wanted me to wear shoes, as per normal in this wing.

Slightly silly rules are imposed only on one particular part of the building, just to make a little more hassle for visitors there.

I returned, shod, and she smiled, hugged me, reached for my hand to hold while we talked. She was still wary of A this afternoon so he stood back. Y was communicative with all of us, and with staff and others passing by. One staff member helped to tighten her wristband, which had come loose, and Y touched her face and smiled as a thank-you. Z abruptly decided, when X turned to greet another resident we recognised from church, that Y would go now, and he wheeled her away without a word. We finished speaking to this other resident, and followed. At 3.40, we caught up, just outside Y’s room. Z had instructed that Y be put to bed, put on his jacket and walked away. Y objected loudly. We asked if she was tired, she clearly said no, and the staff brushed us away, saying Y was tired and wanted to sleep now. Y screamed as they wheeled her away and shut the door behind them. We waited outside in the corridor. Residents at the table watching the whole incident shook their heads and silently expressed sympathy. 7 (staff) passed, and paused at Y’s door. We explained what was going on, that Y was being forced to bed against her will. He shook his head, checked the time (3.45) and said he didn’t think so, at this time. He listened a little more, shook his head again and said she shouldn’t be put to bed if she didn’t want to go. He then said ‘Oh well, so it is,’ and walked away.

It is illegal for a healthcare professional to see mistreatment or malpractice in their workplace and not report it, according to national law.

1 and 9 finally left the room, carrying soiled diapers. We went in, the room was dark, and Y was quietly crying in bed. She clung to X. A and I left, to let Y recover with X. When he joined us later, at 5.10, he said that Y was very shaken and distressed, and had taken a long time to calm down. She still was not sleeping, as she was not tired, but at least she had become calmer. However, the facility’s PT and staff member 7 had come in noisily, taking away Y’s wall chart.

Were they intending for Y to rest? Staff barging in, without knocking, and making noise surely don’t encourage rest. Secondly, why are they taking away a patient’s wall chart? It is there so information about the patient can be passed from one staff member to the next, e.g. from day shift to night shift staff. What are they trying to hide?

The wall chart remains missing, several days later.

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The night wears on…

At 7.25pm, X and I returned. As we approached, we saw through the window that Y was sitting in front of the TV having supper. X noticed 1 and 6 had seen us arrive and marched quickly over to Y’s chair, so we ran indoors. They had made it into Y’s room and were closing the door, but we kept it open and went in. Y, shocked, kicking and screaming, reached out and welcomed us. The two staff crowded round her again, trying to bustle us out, and Y screamed and kicked out at them. X pointed out that clearly Y was not tired, she had been interrupted during her supper, and she did not want to go to bed. 1 accused X of misinterpreting, claiming that Y was screaming because she did want to go to bed and we were preventing her. We were incredulous. The staff pulled Y away, forced us to leave and locked themselves in with Y, clamping on ear protectors as they did. 1 slammed the door.

Words cannot describe the screams that emerged from Y’s room for the next 35 minutes. Pain, torment, fear, torture are words that the sound brings to mind, but it was beyond nauseating to hear her so distressed and unreachable. This is the second time today Y has been forced to bed against her will. In stark contrast, I noticed today at several points, staff hugged or put an arm around residents while talking to them. What was that show for?

It was 7.30. 12 tried to tell us to get out of the public space and half-heartedly said that Y was tired, but we ignored her and stayed. Y’s half-drunk cup of tea and a biscuit sat on a small table beside where she had been perfectly happily sitting. I was astounded. P sympathised, nodding in agreement when I said aloud in English, ‘They are crazy’. M, who had been intimidated into silence by Z two years when she had stood up for Y, approached X and said ‘I understand why she screams. I would too if that was the only way I could communicate.’

Facility manager, 15, claims the residents and staff are upset and disturbed by Y’s screaming.

11 began to lead residents away from us, whether the resident wanted to speak to us or not, including W and M.

S approached me, seeing I was upset, and invited me in to see her new apartment, to show me her things moved from her old house. I went in, we looked at photos of her farm and her family, she told me various things about her life, and I helped her fold some of her sheets, etc. We were interrupted by staff three times, who asked why I was there; each time, S told them she had invited me. X came in to tell me that he was still waiting to be allowed into Y’s room, but that 6 had emerged briefly (just before she came into S’s room, where I was), saying to X (loudly, over Y’s screams), ‘There, calm and tranquillity, that’s all she needs.’

Are they completely deluded or tortuously cruel?

Meanwhile, in S’s room, staff member 11 had refused to leave us, so S suggested I return to X, saying we couldn’t really talk with staff there (making a point about privacy). I said ‘bye for now’ and did so.

At 8.05, 35 minutes after the ordeal began, 1 and 6 came out of Y’s room, nonchalantly saying, ‘yes, all is clear now’ before immediately hurrying away. I was appalled, and called after them, asking ‘What were you doing? You locked yourselves in a room with Y for 35 minutes, and she has been screaming all that time. What were you doing to her?’ They pretended at first not to understand, then they were evasive, but when I pressed them, ‘What have you been doing to her for 35 minutes?’, they approached me and listed the bed-preparation checklist: teeth, toilet, pyjamas… I interrupted, asking, ‘But how does that make her scream? How did you do that?’ They told me, still in The Language Of The Country, to talk to X, and walked away.

We went in. The room was dark, and Y was traumatised. I greeted her, but she mostly wanted to hold on to X. She cried and cried, sad cries, angry cries, helpless cries, hopeless cries. The room smelled of urine. Y was lying in a wet diaper, which had not been changed.

Hadn’t staff said they had taken her to the toilet just now?

Her left hand was badly bruised, new since earlier: we noticed its colour intensifying as the night went on. X sat beside her, and she cried in pain, calling him. Her breathing was very bad, rasping, choking, coughing, rattling. She cried, screamed, kicked. She was extremely uncomfortable; within the next hour she had also defecated in bed.

S opened the door looking for me at 9.25. I explained it was not a good time to come in when she said she had wanted to wish us goodnight, but she gestured for me to  go out with her. I had been crying, so I tried to clean up my face as I came out and stood in the corridor. She stood close to me, both of us leaning on the wall, talking softly to me and shaking her head with pity. I covered my face with my hands and said I didn’t know what I could do any more (quietly, though no staff were visible). She took my hand and led me to the table in the dining room, pulling out a chair for me. We sat together as S was brought her supper.

At 9.30? Why not at 7.30 as usual, with all the other residents?

1 and 11 seated themselves either side of S to supervise her eating (completely unnecessary), glaring at me. 1 talked to S in The Language Of The Country, referring to me, ‘She can’t be here, she must go to Y’s room.’ I said, ‘But S invited me to join her for supper.’ 1 faced me and said, again in The Language, that I had to go to Y’s room or go out. I asked S, ‘Did you ask me to join you? Or do you want me to go?’ S said no she didn’t want me to go, and told 1 to leave me in peace. 1 walked away, muttering that I can’t even talk The Language (implying, I suppose, that I should not be in the company of someone who speaks no English). 11 stayed, trying to keep S engaged in conversation with her, punctuated occasionally by ‘Aren’t you tired, S? Isn’t it time you went to your room? Wouldn’t you like to go and lie down?’. S said ‘no’ definitively each time, but she is polite, so she continued to engage in conversation with 11, all the while trying to include me. S ceremoniously pulled her sandwich in two, and handed me the bigger piece.

While I would never normally accept someone else’s food, I saw she was making a statement.

I accepted her offer, wished her a good appetite and we ate together. S offered me a mouthful of her coffee, which I refused, so she pushed the glass of juice over to me instead, saying that she would have the coffee and I could have the juice.

Another gesture of solidarity, so I accepted.

1 returned to the room, fussing around with cleaning things, under our feet, around us; she asked 11 why I was eating too, and 11 explained S had given her food to me. 11 took S’s hands, and said wasn’t she still hungry (I expect this will be turned into a claim that I am taking food from residents’ plates), offering her some yogurt. S said yes, that would be nice, thank you. When a cup of yogurt was brought, S spooned half of it onto a saucer and passed it to me, so we could share. 11 looked angry. She also began cleaning then, and together they were jostling us around, making comments about how late it was (it was 9.40), and residents should be in bed now. S had finished, so she said she would go to her room now, asking first what I was going to do next (I answered I would return to Y’s room and check up on her and X- S nodded). We walked away, S said goodnight, I thanked her again for sharing supper with me, and gave her a kiss, which she returned.

I went back into Y’s room at 9.45. Y was wheezing and sobbing but otherwise a little calmer. I thought she was starting to settle, but as the night wore on, I recognised this was just a temporary lull, for a few seconds, in between bouts of crying, screaming, kicking and flailing her arm.

She was lying in her own urine and faeces. That must be unbelievably uncomfortable. X and I whispered- if we ask the staff for help, they may refuse, saying she’s already been, or else they change her; not only will they wake her up, but they would terrify her more, so we would need to be here, but they would force us out and prevent us from coming back in. What can one do in a place like this? What is best for Y in this situation?

At 11.05, Y seemed settled for longer periods, so we asked if we could leave; she screamed, cried and clung to X. We sat down again. We tried several times over the next few hours, but each time Y was extremely distressed and reached out for us. If X even so much as stood up to stretch his legs, she screamed in terror and held his hand firmly.

She is not safe here alone.

Y seemed manic tonight. When X sat with her, she switched from screaming and crying to laughing; when he called her ‘Mamma’, she smiled and pressed his hand to her face. The next second she was crying, terrified, traumatised again. She had been really badly affected by whatever the staff have done earlier.

Her voice was very different, her laughs manic and high-pitched, her breathing rasping and catching, her voice very deep, burbling.

At 1am, Y was still awake, though calmer when X dozed off beside her.

Y was clearing her throat, trying to swallow, chewing her lips; was she thirsty or dehydrated from screaming so long?

At 1.10am, I noticed staff had only passed the door three times since 8.10pm. Is this normal? Staff claimed a few nights ago that they pass and check up on residents frequently.

We stayed until Y was at least calm, if not happy, when we wished her goodnight: it was 2.05am. It had taken 6 hours of calming Y to reduce the effect of whatever staff had done to her in 35 minutes in a locked room, to at least a point where she could survive the rest of the night.

1/51

DAY 51

10am: we arrived.

As has been pointed out by one of my observant Swedish readers, I was in fact absent this day, as I was sick. I wrote ‘we’ but I meant ‘A’. Apologies for my mistake. And is it worth questioning who would know that I was absent unless they worked at The Facility?

Y was up at the table in the communal room, eating a bowl of yogurt for breakfast. A sat with her briefly, talking by translating phrases into The Language Of The Country and showing her the translation on his phone, so she could read them. She was unresponsive, being silent and looking away, much of the time, but she responded when he asked if she would like to speak to X on the phone. He called X, and Y spoke to him at length, crying. X asked if she wanted him to come in and visit, she expressed ‘yes’, then X said OK, asking her to hand the phone back to A, which she did. Meanwhile, 15 had approached A, and asked him if she could talk to him. Here follows a summary of their interaction:

15: Take the phone away from Y.

A: No, she’s talking to X and hasn’t finished yet.

15: You’re not allowed to sit here.

A: I’m just wishing Y good morning, I’m on my way now, and X is coming in.

15: The residents don’t like any of you being here.

A: We have made friends here, been invited for coffee in people’s rooms, asked for help, etc. They seem to like us. U even asked us to walk him to the store.

15: We would prefer if you did not let the residents buy you things.

A: He didn’t, he bought his groceries and we carried them home.

15: The staff don’t like you here, they know you are recording them in writing, and this makes them uncomfortable.

A: If we are recording, surely you recognise a problem. We wouldn’t have to take notes of what you or the staff say if you didn’t deny, twist words, and lie later.

15: According to the care plan…

A: I have that care plan right here, I translated it. More than half of this stuff does not happen. And how do you justify such long periods of enforced bed rest, sedation, and isolation in the dark? I’ve also read about nurse burnout, when patients start to look just like obstacles. Your staff are trying to make their own lives easier by locking up and sedating residents, it’s not in the residents’ interests.

15: We had a specialist in to look at Y’s feet on 25th October. Your friend wrote to The National Health And Social Care Inspectorate, complaining that Y’s feet were not taken care of, on 4th November. So that was not true.

This comment pertains to the friends who visited us about six weeks ago, who noticed the skin and toenail infections on Y’s feet. These had been untreated for some time, and are still untreated.

Also, it seems strange to me that the facility manager is able to recite word for word information passed on to this Inspectorate. I am informed this is standard practice, for the Inspectorate to relay any reports back to the facility concerned, on the assumption that those healthcare professionals have somehow accidentally missed something and will immediately rectify it. As I will elaborate in a near-future post, this system only works if all parties are honest, professional, and have patients’ best interests at the heart of their decisions: not the case here, where mistreatment is intentional.

A: I haven’t looked at Y’s feet so I can’t comment.

15: X is different when he doesn’t have visitors watching him. He never visits his mom, he shows up for five minutes late at night to tell the staff how awful they are, he refuses to come to appointments and meetings with therapists, etc.

A: That is not the X we know, and have known for a long time. He loves his mom. And there are no appointments/meetings with care professionals, as far as we have seen.

15: We had a physical therapist here for Y every day at the beginning, who wanted to show X what exercises he could do to help Y, but X refused to come to meet her.

A: Do you have documentation of that?

15: (shouts in The Language Of The Country, then, in English) I don’t want to talk with you any more! (storms off)

A left. Meanwhile, X had arrived, about 10.30, and taken Y away from A and 15’s conversation. Y was low in energy, but was very happy to be with X. They walked around a bit, at Y’s request. They met U in the corridor, and he asked X to come into his room and help him make a couple of calls to his bank and fix his cell phone. Y was happy to be involved, U entertaining her with stories and objects. 15, having just left A, marched in and complained at X that he was not allowed to hassle residents, and that he was not allowed in that room. She pulled Y’s wheelchair away, twisting Y’s left arm back over her shoulder, hurting her (Y had still been holding X’s hand). They returned to Y’s room, where X tried to calm and reassure Y.

X left at 12. A called in at 5.15, to ascertain that Y had been taken out to the communal room for dinner; she had. X returned at 7.30 to wish Y goodnight; she was locked in her room, sitting in her wheelchair. After 10 minutes staff member 2 arrived, opened the door but refused to let X in, and went in herself. (X could see Y through the open door.) Y screamed as 2 closed and locked the door behind her. At 8pm, X was finally allowed into Y’s room. He saw that residents’ rooms were almost all locked again (most people were locked in, but R and P were locked out); staff explained that there was too much running in and out of other people’s rooms, so all would be locked from now on. U, whose door was not locked, informed X that in fact 15 had told residents that A and I were not allowed in any of their rooms, and he (U) was upset about this behaviour, asking us to ensure it was publicised. X left at 9pm, when Y was asleep.

1/52

DAY 52

Y’s wall chart was removed on Day 50. Is this legal? Information cannot be passed from staff on one shift to the next. Why has it been removed? What are the staff unwilling for us to see on there? Is there something wrong going on?

All three of us called over to The Facility at 12, bringing lunch for Y. We saw through the window that she was up at the dining table, so we decided not to go in, as if she is at the table, we would be sent away.

We returned at 2.30 for afternoon tea. Z was in the room, and greeted A and X (not me). We talked a little as we had tea and cake together.

Today I noticed again how quick Y’s reflexes are. She noticed a shaving cut on X’s cheek as soon as we came in today, and she was quick to prevent X pretending to take cake off her plate.

I invited Y and Z to dinner at our house. Z accepted, suggesting tomorrow; he later asked if he could change this to three days later, so he could check he was free. We arranged that Z would book a taxi, we set a time, and I asked Z if Y had any likes, dislikes or allergies. He said, ‘No, Y eats everything’. Y objected and hit him; X said that actually Y did not eat meat, that she preferred vegetarian food and fish, and she smiled again.

This dialogue was carried out in both languages so Y would understand everything.

After we had finished, X picked up the guitar and we sang a few songs together; Z even joined in. I noticed again the bruise on Y’s hand from two days ago, and pointed it out to see Z’s response; he seemed to not have noticed it, he glanced at it, pressed it a couple of times, then laughed and continued as though nothing had happened. At 3.45, Z said he would leave. He told Y she could have her nap now; she objected, shrieking loudly and lashing out. X said that it seemed she didn’t want to go to bed, and if she looked tired, she could have a nap in her wheelchair. Z left. We continued singing. Y sang and laughed, enjoying when A and I danced along. X asked if Y would like her chair tilted back to nap; Y said yes. I told Y my mum had sent best wishes; Y took my hand, but got upset when I said my mum was a nurse (I think she got her hopes up that my mum would be able to help her.)

At 4.50pm, other residents were all eating dinner. 17 (staff) came into Y’s room at 4.58 (without knocking), and pulled her wheelchair away, Y screeching and crying. We began to document Y’s medication (the wall chart was still missing, as was the bottle of Lactulose); we could hear Y scream all the while in the dining room.

Lactulose is a laxative Y is prescribed. This contravenes the medication’s guidelines: it should not be given to patients who are not physically active, as toxic gases build up in the body, and the patient cannot release them, which causes pain, bloating and build-up of toxins in the body.

At 5.10, staff member 17 returned with Y. I said, ‘Oh, are you back already? That was fast!’ There was no response from 17. She pushed the chair to the table, facing out the window into the dark, and left, without a word. I sat beside Y; she was pale and unresponsive. X returned to the table. We decided we could not leave her, and we were not sure whether Y had actually eaten (she is a very slow eater, so in ten minutes she would not have eaten much, if anything). We ordered in some food, to eat with her when A returned. We put on a CD as we ate, and gradually Y brightened up, eating and communicating with us. She picked up her angel figurine on the table, smiled, and kissed its head.

Our friend called X; when X explained what they were speaking about, Y discussed it in detail, expressing her opinions. At 6.55, we started watching TV together on the tablet. At 7.20, all the other residents were eating supper in the dining room, but nobody came to bring Y out. At 7.30 X and I brought Y out. She was told angrily that she could eat here alone, or she could eat in her room with us. Y deliberated, upset that she had to choose between sitting with her friends or her family. We returned to her room, Y’s supper was brought in, and she made us hot chocolate so we could have supper too. Y’s mood was mixed. I wasn’t feeling well, so I left at 8.20.

X stayed. They watched Youtube music videos and sang together. 18 (staff) came in, sat down and talked with Y. She asked if Y wanted to go to bed, Y said no, and 18 accepted that, saying actually she didn’t even look tired. Y indicated that she needed the bathroom, but she would not answer when 18 asked if she wanted to be take to the bathroom; she was afraid. 8 left. Y was very distressed and soiled her diaper. X called staff back in to assist in changing. They sent him out of the room, and after 20 minutes, X returned to find Y in bed. He asked why, when Y had clearly said she was not ready for bed yet; staff said, ‘Well, if she wants to get up, she can call us again’.

This is irrelevant. If Y did not want to go to bed, putting her to bed and saying she can get up again when if she wants (but only with another 20 minutes of wrestling with the staff, who frighten her) is not a reasonable response, and is not considerate of Y’s wishes.

X sat with her until she fell asleep, about 10.45pm.

Denial

O brave new world, that has such people in it!

10am: Today X and I met the municipal authority who is responsible for supervising anyone who acts as legal guardian for someone unable to make their own decisions. I shall refer to her as Ms … I have been in regular email and phone contact with her for about 7 weeks. I informed her at the beginning that from what I see, it appears Z is an unsuitable guardian. I outlined my reasons as follows:

1. He is violent and aggressive

2. He is confused in his logic behind decisions for Y

3. He has no regard for Y’s physical or mental capabilities

4. He does not act in Y’s best interests

I backed up my claims with evidence I had seen (i.e. from my personal journal), minutes from court cases, and documents concerning Y’s healthcare, signed for her by Z.

Ms … looked at all the evidence and began outlining her professional role, in terms of what are not her responsibilities.

1. A person is offered a guardian, but a guardian cannot be forced upon them if they express they don’t want one, and they can speak for themselves.

2. In Y’s case, the facility manager 15 and the municipality mayor made this decision for Y, claiming on false evidence from her doctor that Y was not capable of understanding or communicating for herself.

3. Another national body is in charge of ascertaining whether someone is entitled to apply for a guardian. They do this by consulting the person’s doctor and healthcare staff, and making an assessment. The District Court makes the final decision.

4. Ms … was present at the court case where it was decided Y should have a guardian, and she strongly recommended Z, though it is extremely unusual for a family member to be given this role, in case they have vested interests, and especially where there is disagreement within the family about the course of action. When I asked about this, she did not respond.

5. Ms … recommended in court that Z fulfill all three levels of legal guardianship.

• Level one is a financial one: all bills must be met, every expenditure accounted for, and reviewed by the municipality annually.

• Level two is that he must protect Y’s rights: I pointed out that he was not doing this, because he had denied Y post-stroke care. Ms … dismissed this, saying she would explain the system first, then this individual case; she did not answer my question when I brought it up later.

• Level three is that he speaks for Y: I challenged this, partly on the basis that Y is able to communicate for herself, and partly because Z frequently does the exact opposite of what Y indicates she wants. Ms … dismissed both challenges: the former on the basis that it is not her responsibility to decide whether someone needs a guardian, that is the responsibility of the district court; the latter with the repeated statement that Z cannot legally act thus. She completely denied the evidence I presented, repeating that the guardian does what he thinks the person he represents wants.

1. I asked how she carries out the investigation she claims she is doing on the case. Ms … said that the first step is they report the complaint to the guardian and to Y’s healthcare team, i.e. her doctor and the staff at The Facility, and ask for a statement whether my claim is true or not. I asked what happens if the doctor and/or staff are dishonest. Ms … repeated that I have to trust them, that they are professionals. I showed evidence that they are dishonest. Ms … denied this evidence, repeating that everyone concerned is honest and has Y’s best interests at heart.

2. I made it clear that I accepted that such was written in law, but asked what she would do to fulfill her professional role if she was presented with evidence that Y’s care team were intentionally mistreating her and refusing her appropriate care. She repeated that I have to trust the professionals, as well as suggesting that if I have a problem with The Facility, I should report to the National Health And Social Care Inspectorate, that she is not responsible for this.

3. I repeated that she had said she was responsible for supervising that the guardian was doing his job; if he was not fulfilling level two (protecting Y’s rights, including that to appropriate care) or level three (speaking for her, when she clearly expressed desire to be in rehab), was it not her role to step in and ensure he rectified this? She did not answer, instead repeating that a guardian cannot make healthcare decisions, that he cannot deny care, and that he speaks for Y.

4. I reiterated that yes, I understood that was the legal structure in place, but the fact remains that Z has been and is denying post-stroke care, against Y’s wishes, and I asked what Ms …, in her professional role, would do about that.

5. Ms … parroted again how the report system works, that she asks the care team and guardian for their statement on what is going on. I was getting nowhere with asking the same questions.

6. She also explained how the National Health And Social Care Inspectorate would investigate my claim that the facility staff are guilty of malpractice; they would consult the same people, after reporting what I claimed, and again ask for affirmation or denial. I pointed out again that, if the care team are dishonest, this system does not work.

7. Ms … said that this village is isolated, there weren’t many doctors to consult, and so they would have to rely on the evidence given by Y’s doctor; she used the fact that he had been Y’s doctor for years as further proof that he was a good person to consult. I ascertained that if we asked another doctor from this country to assess Y’s mental capacity, this would be accepted as valid evidence by the District Court if X (as a relative of Y) applied for the guardianship to be terminated. She said she thought so, but advised me to consult the Court itself, as it was not her professional responsibility.

8. When I pressed Ms … again on what she would do if it was evidenced that the care team were not being honest in their assessment, she reluctantly said that she could ask the legal expert who advises her department nationally, to see if there was any structure in place to cover this loophole in the law; she did not know. However, at the end of the meeting, when I reminded her of this, she was vague, saying she would ask some colleagues.

9. I asked how long her investigation would take. She was very vague, suggesting a month, unless I sent more evidence, which would prolong the process; the way she expressed this sounded discouraging, that I should just leave it.

10. I asked whether it was possible to appoint someone else to the role of guardian. She said it’s possible to transfer the responsibility to someone else if Z is proven to be unsuitable, and Y still needs a guardian. In such a case, it would be Ms …’s responsibility to execute the transfer. However, she suggested that we should try first to terminate-annul the guardianship, if we believed Y is capable of understanding and communicating her needs.

We agreed that if I had any further concerns I would schedule another meeting with her and X. My questions still unanswered, we left at 12.10. By and large, Ms … had spent two hours telling us what she does not have responsibility for. Instead of being alarmed at the evidence we presented, she stood firmly behind the law she quoted (i.e. the system as it should work) and determinedly denied all the evidence. I am surprised that anyone with such an important role professionally does not feel, or at least express, any concern when receiving such an appalling report.

1/53

DAY 53

X and I arrived at 1.55pm, for church service at 2pm. Y enjoyed the service, singing enthusiastically- the pianist encouraged her, smiling. Afterwards, we had coffee together; she was communicative and happy. She was anxious to greet the pianist, but after waiting for a few minutes as she spoke to someone else, Z turned the wheelchair away and brought Y back to her room. We said our goodbyes and followed. In Y’s room, we looked at some photos.

Y’s mood was changeable: sometimes she was cheerful, engaged and flipped from one photo to the next herself, and sometimes she was frustrated, crying, dropping her head and not engaging.

Z left at 3.35pm; Y was upset when he left. We watched an old film together. A joined us part-way through; Y insisted that we have coffee with him. X massaged Y’s right hand as we sat there, and after an hour, she showed progress in mobility and flexibility. S knocked on the door of the room; when I answered, I invited her to join us, and she seemed keen, but staff member 2, standing behind her down the corridor and watching us, told her she was not allowed. S knocked again sometime after; she was afraid, saying that someone was angry with her and she hoped we were not angry with her too.

I couldn’t work out why she was afraid or who was angry with her, but I reassured her.

I excused myself to use the visitors’ bathroom, which I found locked. I asked staff member 7 to open it, and he did so, talking cheerfully to me. At 5.20pm, we began to take Y out to the dining room for dinner. 1 and 2 stopped us, would not let us into the dining room, took the wheelchair (Y had been pulling herself along from X’s hand), and pulled Y’s hand from X’s. As we left, we saw Y being spoonfed, instead of eating by herself, as her PT claims she has to do for her rehabilitation.

Y’s wall chart is still missing.

We returned at 7.55pm. Y was fast asleep, lying on her side, in bed. The room was dark, as was the dining room. Most doors were closed. We left at 8.10pm.

1/54

DAY 54

A and X arrived at 4pm. Z was there with Y. The taxi Z had booked for them to come out to our house arrived at 4.30pm. However, Y indicated she needed to use the bathroom. Z was anxious to get going, not to keep the taxi waiting, but X insisted that if Y needed the bathroom, that was more important. Y pressed the button for assistance, and after ten minutes staff member 10 arrived.

Outside the room, X and Z talked. They could hear Y scream for twenty minutes. Z agreed that it was best for Y to be taken to the bathroom if she needed to, and also that since Y had been denied access to the bathroom so much, she had developed a fear of asking for bathroom access, and often couldn’t go when she was taken. Staff member 10 emerged, angry, saying that Y had not urinated, and expressing her anger at Y and X for this. X prompted Z to bring up with staff what they had just agreed on, but Z was evasive, dismissing the incident on the basis that 10 was in fact retired and should not have been working. X returned to the room (which smelled of urine), and saw a urine-soaked diaper lying on the floor beside the bed; the bathroom did not smell of urine. Y had been forced to urinate in her diaper again. Y was very upset and took another ten minutes to calm down. Finally, they got the taxi.

I had been at the house, preparing dinner for us. Y was wheeled in, greeting me warmly, kissing me and handing me some flowers. She loved that the table was laid nicely, there were candles lit, the house was clean, warm and welcoming. She enjoyed the company, which included a neighbour. The cat delighted her; she laughed as she stroked it and it climbed onto her shoulder. I offered Y a choice of two main courses; she admired both and asked for a little of each. She ate very well, followed conversations in English and The Language (she got upset when our neighbour and I spoke in English about a local who had been in an accident), and seemed very happy and comfortable in the situation: a group meal in the kitchen of a farmhouse. I had made a Father’s Day cake for dessert, for Z and our neighbour, both fathers; Y was very happy to celebrate this.

Z had prebooked a taxi back at 7pm, and X decided to travel with them. Y thanked me for the meal, thanked all of us for our company, and again seemed very happy and comfortable. She got dressed in her outdoor clothes again, waved, and they left. When they got back to The Facility, she was very upset and anxious. When they went indoors (Z left), she was angry with staff, inconsolably upset, disengaged from conversation, apathetic to all types of activity, and her mood was changing every few seconds. When she went to bed, Y lay still, staring ahead blankly. She waved X away, but he stayed beside her until she fell asleep, about 10pm.

X was waiting on the road outside The Facility for A to pick him up. A car drove up and down the street, fast, very close to the side of the road where he stood. When A arrived, he pulled in to pick up X and let the car overtake. They drove back towards home, the other car leading the way. When it came to our turn-off, A turned in. The other car had stopped just past the turn-off, but backed up and followed him in. A stopped the car, got out and walked over; the other car backed up and returned to the village.

X has been followed or chased home on previous occasions, by locals in the village.

This is a weak threat but the fact that it still happens is an important indicator of how crucial it is to the mafia system here that people live in fear, that the status quo is not challenged.

1/55

After a couple of days working remotely, I return to my chronicle.

DAY 55

A and I called in to say good morning at 10.35. Y was sitting alone in the dining room. Her head was dropped and she was very unresponsive; she had been eating yogurt for breakfast, and some was trailed across her face. She didn’t want to talk so we sat with her quietly for a while, then said we’d leave and see her later. Staff followed and watched us for the duration of our brief visit. As we left, I saw staff member 7 leave V’s room with a breakfast tray; she had not been let out of her room for breakfast. It was 10.40 when we left.

X and I returned at 2.30. Most residents were out in the dining room for afternoon tea; R, I was glad to see, was out, and being visited by some family. Y was in bed, in the dark, screaming and crying, a CD playing in the background (it was on the last track). The room smelled of faeces; used diapers were in the trash. She hugged X closely, and greeted me briefly, but she mostly clung to X. He told her about our meeting yesterday, and what we had discussed (see my ‘Denial’ post): Y was happy and interested. X asked if she wanted to get up, and she started to cry anxiously.

Staff member 1 knocked on the door and came in.

Observe the change in staff behaviour since it was revealed that they are aware of what I write on my blog- they knock the door, they speak to Y directly, they try to make a show of affection towards residents when they see us approach.

Y screamed, then closed her eyes, turned away and reached out to X, smiling and laughing when he spoke to her after 1 left. X went to the bathroom to get some paper for Y; at first, she was OK, calm, even singing a little, but she quickly began to fret and shriek, shaking her arm. 1 returned, bringing afternoon tea; Y screamed repeatedly. 1 left and immediately returned with 11, who Y greeted. 11 grimaced when she heard Y cough. The two staff set Y upright for her tea, pulling her tray on her bedside table close to her. Y was cheerful, waving as they left, but was upset and cried when she realised she was alone. I made tea for X and I, so we could join her. I showed her a postcard from my mum, from one of my favourite beaches in Ireland; Y was interested, and read the card, spotting her name written in the message (‘oooh!). She was pleased I had brought some chocolate for us too. We sang together during tea. She shared her cake with X; her piece was bigger, so she broke off some to give to X. When X dropped his piece of chocolate on the bed, she insisted he take her piece and she take the dropped piece. X asked her to pass him a cookie; she passed him two, and served herself and me. After tea, she giggled at me washing up the cups, X joking I was her home-help.

When 1 came in to take away Y’s cup and plate, Y screamed. 1 asked her if she wanted to get up, Y indicated no, and X suggested they watch some TV or listen to music, which she preferred.

Note 1 could understand Y communicating ‘no’, and she accepted this, though staff claim Y can neither understand nor communicate.

I noticed a new bruise on the inside of Y’s left wrist, about 6cm in diameter; it looked 1-2 days old.

1 and 11 returned at 3.45 to ask Y if she wanted to get up. Y, not in a good mood today, dropped her head and closed her eyes: she didn’t want to decide. They left. We tried a couple of activities, and finally just sat with her quietly until dinnertime. She stared straight ahead and was quiet, still and disengaged.

I excused myself to use the bathroom. On my way, I saw R still in the dining room, now alone, and went over to say hello. He was very happy, smiling, he gave me a big hug, and held my hands as I sat and talked to him. I also passed S, who was equally happy to see me, asking how I was, aware that I had been ill for a couple of days. W also greeted me. I saw two staff in N’s room; when I returned, they had left and the room was locked shut.

Shortly after 5, 1 and 11 came in to Y’s room. They put her into her wheelchair, with X and I still in the room (this is unusual!). 1 then insisted we say goodbye to her in the room, as we were not allowed in the communal space. Y firmly held X’s hand. 1 repeatedly asked X to let go of Y, and he demonstrated, lifting his arm high in the air, that Y was holding him, not he her. 1 pulled the chair away, Y crying. Y was placed at a table alone, facing out into the dark, while everyone else sat together at the other table.

We left at 5.15. Y’s wall chart is still missing.

1/56

DAY 56

An aside: Resident U has been missing for about a week now. We were concerned, particularly when we saw a new resident had been moved into his room. We called him, and discovered he had been taken to hospital, 250km away, for a few days, and although he has paid his rent on his private apartment at The Facility, they appear to have sublet it without informing him. He is very upset and concerned.

X and I arrived at 2.30, and found Y with Z in another wing of The Facility, having coffee with a large group of residents. She was happy to see us. X, Y and Z left shortly after we arrived, to return to Y’s room. I followed, walking with V and W. V’s room was locked, so we asked 15 to open it (she unlocked the door and left it ajar, so it would still be locked when closed). I walked V to her room, she thanked me, and I greeted R and P on my way to Y’s room. 15 closed the door of Y’s room behind me. We looked at some photos together. Our friend A joined us about 3pm. At 3.15, a member of staff came to the door and called to Z asking if he wanted Y to be taken to the bathroom and to bed yet. Z answered not yet, but at 3.45 (Y was not asked). Z left at 3.40; he told Y she needed her rest now before dinner, and she screamed and hit him. Staff came in at 3.45, as we were watching music videos. They tried to take Y to the bathroom but she did not need or want to go. She objected to being told she was going to bed now, shrieking, lashing out, and loudly singing along with the song playing. They argued with us for a while, as we pointed out that Y was not tired and was enjoying what she was doing, as well as asking them to ask her whether she wanted to go to bed. One staff member gave up and left. One remained, trying to tell Y she should sleep, she had been up since 8am. We asked whether, as per Y’s care plan, she could choose to have her nap after dinner instead, but the staff member said dinner time (5) was too close to supper time (7.30), they wouldn’t have time to put Y to bed and get her up again.

Is this schedule designed for the residents or the staff?

Y was fed up with this conversation by now, and had dropped her head and disengaged. Eventually the staff member too left; when the door closed, Y suddenly brightened up and laughed delightedly. We watched a film together, and a couple of comedy sketches; Y was absorbed and laughed a lot. At 5pm, X told her it was dinner time; she pushed her wheelchair away from the table, ready to go. He then said that we would have to leave and come back after dinner. She objected. X repeated the two sentences a few times; Y closed down, dropped her head, closed her eyes and disengaged. We decided, after trying to reach her for about 10 minutes, that it would be better if we ate together. We brought in Y’s dinner from the dining room, ordered ourselves some food, and shared the meal together. Y was cheerful again. Staff members 7 and 8 came in during the meal to ask Y if she needed the toilet; she said no and gestured she was eating. After dinner, we cleared up. X left the room for 20 minutes, during which time, Y was bright and talkative with A and I, telling us long elaborate stories punctuated by laughs; we conversed with her in English, her language and gesture. When X returned, Y gestured that she needed the toilet. She was at first afraid to press the assistance button but eventually she did, at 7.08. 7 and 8 came at 7.11. We left the room and sat in the communal room (no other residents were around); we could hear Y scream until they came out at 7.38. Y was in her wheelchair and the room smelled of faeces. Y was glad to see us and in our company she soon cheered up again. We sang a few songs together, X playing guitar; Y really enjoyed this. A and I left at 8.15, just as 7 brought in Y’s supper tray.

1/57

DAY 57

A and I arrived just before 9.30am. All the rooms were locked, including Y’s, and the communal areas, including corridors, were dark. I could hear Y screaming; I knocked twice but no answer. I asked a member of staff in the kitchen if I could go in. She came over, unlocked the door and called in; staff member 8 came from the room, and told me Y was in the bathroom, and to come back later. We waited in the foyer until 9.45; staff were still locked in Y’s room, and she was still screaming. At 10am, we returned again, to see 7 and 8 come out, carrying a trash bag of diapers. We went into the room; the blinds were open but no lights on, and the room was quite dark. Y was in bed, dressed; she was pale and dazed. She was very happy to see me, clinging to me for a long time, sobbing and talking and laughing. She seemed wary of A, dropping her head and disengaging when he spoke to her. She held on to my hand. I talked a little, but mostly sat quietly with her. Her mood changed between completely shut off (almost asleep) to bright-eyed and talkative. She was very affectionate towards me. She brightened up a little when we put on some lights. I wasn’t sure if she had had breakfast, so I offered her a cup of tea. She was indecisive. When A and I had made tea, I asked again, and she nodded, brightening up again. We propped her up sitting in bed and brought her tea table over. She reached for her cup a few times but seemed to forget why, and dropped her hand again. Eventually, she picked it up and had a few sips. She seemed to lose interest then. At 11am, we said we would leave her to rest, and would see her after lunch. She nodded, hugged and kissed me, and waved us goodbye.

1/58-59

DAYS 58 & 59

As I was away, working remotely, I use A’s observations for these two days.

DAY 58

16:15 – As I arrived, staff member 8 saw me coming.  She bee-lined to Y’s room, unlocked it and let herself in, making sure to lock it again as she closed the door behind her.  While I waited in the hall, S started to talk to me and seemed very agitated.  I couldn’t understand her and tried to explain X would be there soon and I would ask him to find her.
16:35 – X arrived. Y’s door was still locked and Y was screaming very loudly.
16:45 – We were finally admitted into Y’s room..  The lights were out and she was in bed.  As usual she was very happy to see X and expressed that as she normally does, almost as if to communicate that she is glad there is finally someone there to look out for her.  She wasn’t as happy that I was there; I ended up hiding
in the doorway.
17:05 – No one had come to collect Y for dinner even though the rest of the residents were seated and being served.  X asked Y if she was hungry and encouraged her to push the button so she could be helped out of bed and brought to dinner.
17:20 – Staff finally show up to help Y up, and we left.

19:46 – We got back and the door was again locked.  The rest of the residents were out having supper.
19:57 – We were let in.  Y was back in bed and wasn’t served any supper. Again she was happy to see X, and not so much me.
20:15 – I left.
00:08 – X left.  He reported that Y was having trouble breathing.  She would stop breathing all together for 30 seconds at a time, then struggle to start again, and often needed a couple tries to catch her breath.  X reported this to staff as he was leaving.

DAY 59

14:30 – X and I arrived to take her to church.  R was there in the communal room, as was Y, hunched over sleeping in her chair.We left.

18:30 – X and I returned. Y was quietly watching TV in the communal area.  As usual she was very glad to see X and responded positively when he asked her if she wanted to join us in her room.

18:35 – In Y’s room, X showed Y he had brought supper, and she insisted we eat then and there.  She seemed to be behaving strangely.  Things that I’ve seen her do many many times, such as putting the chocolate into the warm milk, were difficult for her. X suspected she had been drugged somehow.  I can’t say for sure but she definitely seemed out of sorts. but not just sleepy.

19:30 – A staff member came in to see if Y wanted supper, putting her face into Y’s. Y smacked it away and protested to her being there; in response, she forcefully jerked Y’s hand down and to the left, putting Y’s arm in what looked like a painful position.  It happened really fast so I’m not sure that it hurt as much as it looked like it did.  The member of staff then stormed out of the room.

20:15 – Staff came in to put Y to bed. X and I sat with the other residents and had a nice chat at the dining table.
20:40 – We went back into the room. Y was nearly asleep already.  I left.
22:10 – X left, He reported she seemed uneasy and worried after I left.

1/60

DAY 60

We arrived at 6pm. Y’s room was locked and she was screaming. Staff member 2 let us in; the room was dark. Y was in bed and very distressed. She had no covers on the bed, and her nightdress was up around her waist. The room smelled of urine.

I keep today’s account concise, because I cannot describe the shock of seeing a feeble old woman locked in the dark in this state, screaming. I simply can’t describe the horror sufficiently.

She cried and clung to X. After some time she calmed down and greeted me too. She indicated she wanted to use the bathroom, so we helped her press the button for assistance. Staff member 16 was angry when we told her what Y wanted, saying she had already defecated in bed today; she left and returned with 2, and we waited outside until they were finished. Y was very glad to see us return; she had a new nightdress and her quilt over her. Her cough sounded very painful and she spat out a lot of thick white mucous with every cough. We asked if she would like to get up; she said yes and we pressed for staff again. They were even more angry this time, arguing that according to their papers she was supposed, for ‘medical reasons’ to stay in bed now. We insisted, and she was moved to her wheelchair. We returned to her room and made supper to share with her. She was happy and communicative. We watched a couple of music videos, which she really enjoyed. I then left with A, and X stayed; it was 9pm.

A Dithering and Odd Conclusion to Chapter 1

I need, for my own emotional health, to close this chapter, at least for the moment.

I intended at first to write about one abusive relationship between an institution and one of its residents, but I have uncovered far more complexities within the human tendency towards abuse.

My first impression remains; Z is an obvious abuser, denying his own wife the care she needs and is entitled to, fighting tooth and nail against the established procedure which would normally guarantee her healthcare, and for years at that.

Unquestionably too, we have seen an abuse of the fundamental human right to live in dignity within The Facility. The Facility’s manager and staff behave intentionally cruelly towards Y and other residents, and this is unforgiveable. Misunderstandings and mistakes are forgiveable; deliberate harm against another human is not.

(I will devote a future short chapter to the development of human moral code, but here I present one of my own moral rules, which inspired this chapter.)

They are not the only ones though. As shown in my interludes, doctors, local government authorities, even the police, are all complicit. It would be easy then for us to shake our heads and sigh at this bureaucratic system, denying the fact that by doing so we too are complicit. We do not stand up and demand change. Why not? For the people mentioned above, they would risk losing their jobs, which, in an isolated area, is equated to losing all life. For us, it is too discomfiting to think that this is happening in our time, in our developed world. Even more disturbing is the fact that this happens not only in this country but in all countries. Not one country in Europe or worldwide is untainted by abuse within their governing political and societal system.

But what about those who are guilty of abuse at some level less obvious, even questionable? Does that make it any less abhorrent? Could one argue, for example, that it is cruel for X to continuously tell Y that things will be different, that he will fix them, that she will get what she needs, when at the same time, Y sees no progress, and because X fights for her rights, his enemies fight back harder, punishing Y, the innocent victim? Is it fair to encourage hope while being central to what is hoped for being denied? Or is that utterly unreasonable, and am I abusive for suggesting it? There is more than something to be said for hope, as I will discuss in a future chapter on that subject. But is a sense of  hope misused, even abused, in this case?

I apologise to you, reader, for inflicting my observations and opinions upon you. This chapter does not make pleasant reading. I wonder if it is as upsetting to read as it is to see and write; if it is anywhere near that, I am deeply sorry.

Finally, I admit my own abusiveness. I have committed many abuses, significant to different degrees, in my life. One of my greatest, and an ongoing one at that, is to abuse myself by hurling myself unguarded into damaging situations and allow myself to feel, indeed to absorb, all the pain I can. While this may sound falsely humble and self-gratifying, it is part of my nature I am not proud of at all. When I abuse my own heart, soul and body in this way, it causes me to break down, and in my broken state, to damage others and let them down. I have let this happen time and time again, damnable human nature, with similarly destructive results.

Therefore, I close not only this chapter of the blog, but the trip I took here intending to help X and Y. I have allowed myself to be damaged by it, and now seek my own rehabilitation, leaving them behind in this hell alone. I try to justify it to myself, saying I have done all I can within this dysfunctional system, that I am needed elsewhere, so I cannot fight X’s and Y’s cause while denying one closer to my own kin, that I am losing hope (that word again!) in any progress for Y, that by being here and reporting my observations, The Facility lash out harder against Y and the other residents, which my conscience cannot allow. But actually, I have to admit I have abused my own wellbeing and that of X and Y by joining and then abandoning this fight.

See? There I go again. Words like ‘abandoning’, ‘damage’, ‘hell’. Tormenting myself, or being honest? Is there a difference, when confronting aspects of humanity objectively or subjectively?

It is time to consider another, more positive, aspect of humanity in my next chapter. I hope you will join me again in a few days.