My Uncle was tied to the bed. Tied up like an animal.
My uncle was 35 when a brain tumor was discovered. He had an operation and it went pretty well. After the operation he suffered from brain damage that affected his motor skills. He staggered around, had trouble holding anything and he had slurred speech. It was like he was drunk, but without the alcohol. But he managed just fine. He became a boatman on a local maritime academy where he was the leader of a small group of pupils.
Two years later the tumor had grown back. This time it was bigger and worse than before. He had another surgery in October, but it didn’t go to plan. The brain damage got worse. He couldn’t stand or walk any more. He had a hard time eating and drinking by himself. He got transferred to a rehabilitation center, but that wasn’t the right place for him. They specialized in getting people better, getting them home. And getting him home wasn’t an option. So he got transferred again, to a nursing home. Closer to where his family was.
In this nursing home they weren’t really equipped for younger patients. He had a hard time at first, when he had a bed in a ward with 5 older men. But he got a room for himself and he was happy about it. In this time I went to visit him at least once a week. More if I could manage between school, work and friends.
He loved listening to music and watched TV. He got an electric wheelchair and we went out if the staff had time to lift him out of bed into his chair. I helped the staff washing his hair or doing his nails. Or just give him something to drink. At this time his motor skills got worse and he was tilting his head unvoluntary and he was drooling all the time. But he was fully aware of his condition. One time, when we went out we came across an old lady who thought she had to make a remark about “how nice it was of me to go out with a lunatic”. I kindly told her that we shouldn’t talk about people that way and certainly not about people who didn’t have any mental problems.
Eventually my Uncle got worse. He told me he vision and hearing were getting worse and that it looked and sounded like he was constantly under water. He didn’t want to listen to music any more and the TV became a torture for him. He just laid on the bed and couldn’t do anything. The staff tried very hard to help him in any way they could, but he got worse and worse. In May he got sent back to the hospital for another operation. They tried to drain fluids from his brain and hoped that it would help his condition. But it didn’t. By then he had decided that he didn’t want to live like this anymore and he signed an intention for euthanasia. This ment that he wouldn’t go to ICU if his condition worsened. But the hospital doctors didn’t want anything to do with it and sent him to the ICU when he got a chest infection. He couldn’t breath on his own anymore and they inserted a breathing tube. My Uncle, the whole family, was livid about this decision. My Uncle tried 3 times to get the tube out. Twice he succeeded. But instead of letting him die, like it was his wish, they re-inserted the breathing tube. Instead of helping him they tied his hands to the bed. A human being, fully sensible, fully understanding what was going on. they simply tied him to the bed.
About 10 days later we got a tip that the next weekend there would be a doctor that might be willing to help my Uncle die. My mom immediately got in touch, but called too soon. She got nothing. A few hours later the doctor called her back and discussed everything. The family went to the hospital and my Uncle was granted his wish.
I remember very clearly when I saw my Uncle alive the last time. He was lying in ICU, all wired up. I didn’t know what to say to him so i searched for his hands. I found them on the cold iron of the bed rail. All tied up. I stroked his hand and looked at his face. I knew he only saw blurs, but he knew I was there and his eyes begged me to free his hands. And I had no idea what to do. I was 17, what was I supposed to do? I felt guilty and just plain terrible. I thought one could trust hospital doctors, they were there to help a sick person. But instead of helping my Uncle, they tied him to the bed.
I realised in a split second that we should have a law insisting doctors to help people who had a good reason not wanting to live any longer. We should have people who you can trust to do the right thing should you need it.
Thankfully we now have a good system in place. If anyone wants euthanasia they can get help. Doctors have the right to say no when they’re asked to help someone, but they need to give them a name of a different doctor. And I’m thankful for that. I hope this means that there never will be anyone tied up to the bed, simply because there’s no-one who wants to help the die.
My uncle got tied to the bed. All because he wanted to die in a humane way.