by Calle Johansson, her son

Click here for the Swedish Summary.

• My mother suffered a stroke on June 29, 2012

• She was refused care by her daughter and her husband

• She has been subjected to further abuse and neglect at Levinsgården in Gäddede, which her daughter and husband both encouraged and approved.

• Those who have objected to the abuse have been given restraining orders, and been threatened and harassed.

There are people who have come up to me and thanked me for what I do. They do not want me to mention their names for fear of reprisals.

I understand their fears and agree not to pass on their names at this stage. Moreover, I have had a taste of these things myself. What I do not accept, however, is that people should have to fear reprisals when they report neglect, abuse and other cases of mistreatment.

Here is an overview of what has happened. There is also a very comprehensive and detailed documentation of everything that has happened.

It started with my mother, Ida Johansson, having a stroke on June 29, 2012. It was in the back of the brain on the left side. She lost her speech and became paralyzed on the right side. It was serious, but she was contactable and it was no problem to communicate with her. It was not difficult to see the fear in her eyes of not being able to move or not being able to speak properly (more than half words). But she became calm when you held her hand and told her we would help her. She couldn't even get out of bed by herself when she needed to go to the bathroom , so she was completely dependent on trusting those around her to help her with her needs. In the acute phase, she received good care at the hospital in Östersund. They helped her to the bathroom when she showed that she needed it. She received physiotherapy and occupational therapy once or twice a day, starting after just one day in the stroke unit. The time of the day when they came to work with her and she could exercise was when she felt best and was happiest. She tried everything as much as she could and she was very willing to exercise. After the acute period, she was to receive care at Remontagen Rehabilitation Center in Östersund. However, my sister and my dad managed to stop this. The doctor agreed to send a stroke patient to a nursing home, to Levinsgården in Gäddede, instead of allowing her to be treated for her injury. Moreover, the elderly care in Gäddede is notoriously bad, which was well-known by all of us. My mother had asked us to promise that she would never end up at Levinsgården or Forsgården in Gäddede. I, my sister and my father knew this - as did many people in the village who have seen their relatives quickly fade away and be neglected.

It is obvious that you do not want to end up in a nursing home instead of receiving care. Not getting care for a broken leg would be bad enough. Not getting care when you can't move or talk is far worse. There is no mistaking the fear in my mother's eyes when she was no longer receiving care - and when she had ended up in Levinsgården, which she had feared the most. I heard from others that she had been confined to the relief room and cried almost continuously for the first week. I was in Herräng working at a dance camp when she was sent up to Gäddede. I interrupted my work and went up to Gäddede. Fortunately, I had the help of many friends during my time in Herräng. Several were doctors and they thought the whole thing was strange and very remarkable. They said that sending a stroke victim who requires inpatient care to a nursing home is not on the map. I was advised to talk to the stroke association. They said the same thing, and that when it comes to stroke, you have a legal right to rehabilitation. Stroke affects 30,000 Swedes every year. It is one of our most common diseases. It is also perhaps the most painful disease you can suffer from as you can even become completely trapped in yourself. After what I have seen, it is quite obvious that you do everything you can to help a stroke victim. It is probably quite easy to understand. Stroke is well known and there is very good care for those affected. The Stroke Association was very helpful and positive. It shouldn't be too difficult for Mom to get treatment for her stroke. However, they were very surprised that someone in the family had tried to stop her rehabilitation. Relatives do the opposite. They fight tooth and nail for more and better care for their loved ones. Otherwise, the stroke association told me much the same as they did at the hospital in Östersund about the importance of security, exercise, encouragement, someone always being available, family support and encouragement, stimulation and activity, a positive environment, etc., but also about the risk of fear, anxiety and depression if you don't get the help you need and have a good environment. They also gave me contact information for the president of the stroke association in Östersund. I spoke to her and got the same answer. It is unthinkable to refuse someone care after a stroke. She wondered if Dad was in shock. The idea that relatives would oppose rehabilitation does not occur unless there is something behind it. She also said that it wouldn't be difficult to help Mom get care. I got great help from her too. She called me on Saturday, less than 24 hours later, with 3 options for rehabilitation. It would be enough to talk to the district doctor in Gäddede to get a referral. She also gave me the contact details of Remonthagen Stroke Rehabilitation so I could talk to them. I spoke to the district doctor Mats Ullén on Monday. He wrote a referral for Mom. I told Dad that Mom now had a referral for rehabilitation. Dad called my sister. The next morning Dad went down to the doctor and stopped the referral. The doctor withdrew the referral on the grounds that Dad speaks for Mum when she can't speak for herself. The curator and the senior doctor for inpatient care at Remonthagen called me and asked for the referral. Mom was welcomed there immediately, but they were still waiting for the referral. I told them that the district doctor had withdrawn it after pressure from my father. They found it very remarkable that a relative would oppose rehabilitation. Partly because you want to help your loved ones and because stroke is extremely painful for the person affected. But also because it is difficult and hard to take care of a stroke victim. Any small improvement would make it easier for the people around to help a stroke victim, and it would mean the world for the stroke victim herself.

I also received help from friends and doctors outside Sweden who told me exactly the same thing. This included a friend in London who has a PhD in aphasia. She told me how important it is to have speech training and communication and how important it is that she gets professional care and that they start right away. Friends in the US and Switzerland also told us about the importance of safety and how they use volunteers to help so that there is always someone available when you are worried or need something and can't manage on your own. They also said that sending a stroke victim to a nursing home instead of to rehabilitation is not on the map. It is pure torture. But it would get far worse...

The first 2 weeks at Levinsgården, Mom was not allowed to leave her room. Then it turned out that she was not allowed to go to the bathroom when she needed to. She held it in as long as she could and panicked more and more, but eventually she was forced to soil herself in pee and poop. I brought up confinement and that the staff was forcing her to soil herself with the staff. They said they didn't have time to take her to the bathroom because they didn't have enough staff. I raised this issue with the nurses in charge and also with the head of the unit. They denied that they didn't have enough staff and claimed that Mom had never even wet herself. Fortunately, some of my friends came up to visit me and Mom. They saw the same thing and were very upset. They contacted the head of social services in Strömsund municipality, Monica Grahn, and reported how Ida was being confined by the staff and how they intentionally forced her to soil herself, among many other things. Monica said that this should not happen under any circumstances. My friends also contacted the MAS, the counselor and the head of the municipality.

Confinement and sedation are hardly the best care for a stroke victim. When Mom couldn't hold herself any longer and was forced to soil herself, she was completely devastated. She could lie and stare for a couple of hours devastated beyond words. She then wanted me to help her to the bathroom, which I thought was obvious until she was in a place where she felt safe. However, my sister called Levinsgården and said that I was not allowed to help Mom to the bathroom on the grounds that Mom is not a nudist and that I am not allowed to see her naked. Levinsgården thought this was a good argument, so Mom had to continue to soil herself, which was terribly degrading for her. Just as degrading for her was that she saw people and tried to get help, but no one did anything. My mother was very scared and often wanted me not to leave. But if I told her what I was going to do and that I would be back in an hour or so, she found courage to be ok with me leaving."

How devastating confinement and soiling herself are for a stroke victim, there was far more going on at Levinsgården. Here are some examples:

Confined to the bed more than 16 hours/day, sometimes the whole day

• Confinement:  Alone in the room behind a soundproof door (they don't call it confinement because the door can be opened from the inside - but who is going to open it when Mom is alone in the room and still paralyzed?)

• No physical activity

• Forced by the staff to soil herself – humiliation and also a method used as torture to make someone lose all self-confidence and self-esteem.  

• Constipation as a result of staying as long as she can without soiling herself and not being allowed to get out of bed or move around

• Has been given lactulose, which is gas forming. This is despite the fact that she cannot move and that lactulose should not be given to people who are not physically active. She was in terrible pain from the gas. I can't even describe how she was sweating in the agony of not being able to release gases.

• Isolation in a dark room in order to be able to "understand what has happened", "reflect on her situation", "process impressions", "cry out her anguish in solitude", etc.I found her several times alone in a dark room with only a grave lantern on and with very strange music (very unpleasant, like a horror movie). 

• Has been given Imovane

•  Has been given also other drugs such as Citalopram, Stesolid and Sobril

•  Has been denied access to the outdoors

• Has been refused visits by those not authorized by Levinsgården
  Note: Everyone that had reported abuse were prohibited to visit Ida.

• Has been refused to have meals or a social snack with those she wants, e.g. with me.

• When she was vomiting, she was left alone lying on her back locked in her room. I was not allowed to come in to see her. When I managed to get in at a later date, I found her with vomit all over her face and neck because she couldn't turn around when she vomited.

• Has been refused care of her teeth, which very soon led to terrible toothache. It then turned into periodontal disease and inflammation of the gums and indescribable pain. She found it extremely difficult to eat, but she tried. If she couldn't eat due to the pain or if she screamed in pain, the staff would come and tell her she wasn't being nice. They pulled her away from the table and locked her in the room behind the soundproof door so she wouldn't disturb them or others, even though she was crying and screaming in pain. Despite the terrible pain, Mom still tried to eat every time. She knew the penalty.

• The staff’s argument for locking her up despite her screaming and crying: "She stops screaming if you wait".

• Perhaps the sickest thing of all is that Levinsgården calls this their stroke rehabilitation program and the district doctor calls it "the best stroke rehabilitation Ida can get in Sweden". Who should you turn to then?

Nothing of this is rehabilitation for a stroke. I also began to understand what the people in the village meant and why they were afraid of reprisals. Many thought that what I was doing was good and they hoped that there would be a change. I had their support, but they didn't want to be involved themselves or for me to mention their names. They said, among other things, "we want to be able to stay in the village", "then I wouldn't even dare to go to ICA and shop", "then I won't get care if I need it" or "I have children in school who would be affected".

On Saturday, September 8, 2012, the head of the municipality, Anders Andersson, came up to Gäddede for a meeting regarding Mom's situation. Some of my friends had contacted him and other officials in Strömsund municipality about the neglect and abuse of Mom. It was a terribly frightening and unpleasant meeting. Instead of protecting Mom from what she was being subjected to, Mom and I were subjected to threats. He started by stopping transparency by imposing a restraining order on me and on those who had reported the abuse to him and to others in the municipality. There were also a couple of names of people in the village on the list because they had objected to the confinement and that the staff forced her to soil herself. These people were frightened and have not visited Mum or protested further since. They found it very unpleasant and scary (Note: They were terrified). In addition to the restraining order, I was also threatened of consequences for me and my mother if any of this came out - i.e. if I talked to the media or other people. I was only allowed to talk to the people in charge at Levinsgården, otherwise it would affect Mom and she would get even worse treatment (with the justification that it would be a work environment problem for the staff if it got out). He threatened me that it wouldn't go well for me either if something got out. The head of the municipality mentioned, among other things, a dance event that I was responsible for, the Gäddede International Lindy Hop Festival, and that people in the village would wonder what kind of person I was. These were not just empty threats. He also acted through emails to the head of tourism and to municipal employees so that I would get into trouble.

About a week later, on September 17, I was at a meeting with the district doctor, Mats Ullén. There he called the treatment that Mom is receiving stroke rehabilitation!!! He even went as far as claiming that "at Levinsgården, Ida gets the best stroke rehabilitation she can get in Sweden" and he was satisfied with how they carried out the rehabilitation at Levinsgården.

This is definitely not stroke rehabilitation and I understand why people in the village are afraid to say anything. But you can't turn a blind eye to something like this. This is a person who is completely dependent on the people around her to help her. What Mats Ullén and Levinsgården call stroke rehabilitation is definitely not what anyone else calls rehabilitation. It is definitely not security. Nor is it anything else that a stroke victim needs: training, encouragement, someone always on hand, family support and encouragement, stimulation and activity, a positive environment, etc.

If a young healthy person was treated in this way and it was not a doctor who prescribed this, it would have been extremely criminal and called torture and attempted murder. What devastating effects would this then have on a person who is already sick and weak? Isn't it far more serious when the abuse takes place in the health care system, where the doctors and nurses take advantage of their superior power against a person who is in a particularly vulnerable state and cannot defend herself or even have her voice heard? Is it not worsening that a doctor gives both the order and his blessing to these abuses, leaving the already injured person in a helpless state? What a horror!

It was terrible to see how Mom was tormented by their "rehabilitation" methods. It was downright sick. I promised that I would help her so that she would get the care she needs and so that she could be in a place where they take care of her, listen to her and where she can feel safe. She was very happy. She hugged me and she cried. You clearly can’t leave someone in this horrifying situation, without care for her stroke and with that treatment.

Anders Andersson and Levinsgården have continued to carry out their threats. Mom has been given more isolation and more drugs and they have tried to prove that she cannot communicate. I have been given a restraining order at certain times and I have been falsely accused and harassed in many different ways. However, I stay with my mother as much as I can and I tell her what I am doing and that we are going to help her. She often hugs me, and she seems hopeful. But she is badly affected by the abuse she is receiving.

My Mother is fighting for her life, but she is tortured by the treatment she is facing. The staff may have learned how to better hide what is going on at Levinsgården. But the abuse and neglect continue as before.

Recently she was locked up again. She was not allowed to get out of bed for dinner, nor for the evening meal. She is tormented by the confinement and darkness. She still tried to get out of the bed herself but she was refused. I had fika, a healthy social snack, with her in her room: