‘It comforted me that the recipients no longer had to undergo dialysis’

The living room window offers a view of what Ed looked out at for years: a meadow with cows among standard fruit trees, as was common in Limburg in the past, but is not often seen anymore. ‘Ed came from a farm; he loved farm life. Until the very end, he enjoyed this view,’ says his wife Anita.

Ed was once an active man. ‘He wasn't a talker, but he couldn't sit still. He was an ICU nurse and later unit manager of the acute admission department, which he helped set up himself. His work was his passion; he didn't think he needed a vacation. But if I booked something, he was happy. And he developed all sorts of things for his work. For example, he helped develop safe injection needles that nurses wouldn't prick themselves with as easily. Ed was also very handy; he could actually do anything. He did the last plastering work in our daughter's house. He was also always there for everyone.’

Clear mind

Worries arose when Ed started moving strangely in 2013. ‘His bike would get scratches, for example, very strange. The GP thought it was Parkinson's. He was given the maximum dose of medication for this disease, but it didn't help.’ Ed deteriorated quickly, whereas Parkinson's progresses slowly, says Anita. ‘It later turned out to be MSA, multiple system atrophy. The diagnosis was a blow, because MSA is terrible.’ The condition leads to brain damage, muscle stiffness, and eventually paralysis, while the mind remains clear. That usually takes about 6 years. ‘The only bright spot was that it is not hereditary. Our children were safe.’

There is no such thing as 'can't'

Ed, Anita, and their three children remained positive. And Ed thought far ahead, says Anita. ‘Just a month after the diagnosis, he said he eventually wanted euthanasia. I thought at the time: what are you already thinking about?’ But he was farsighted, because by early 2015, Ed could no longer work, and later that year they had to move to a ground-floor apartment. Their lives gained color again for a moment when the first grandchild was born, whom they loved to babysit. ‘Ed was crazy about the grandchildren; he had the most fun with them. When they got a bit older, they wanted to help. They would brush his teeth or put his breathing mask on and off. They found everything interesting, even the patient lift. They were very close. That was very nice for all of us. Now Ed is their Grandpa Star.’

Meanwhile, Ed was deteriorating, says Anita. ‘He got an electric wheelchair and we bought a wheelchair-accessible van. We still did fun things. For example, we all went on vacation to an adapted holiday home in the Ardennes. With a full van and the trailer behind it full of stuff: his shower chair, the wheelchair, his bed... It was as Ed always said: there is no such thing as 'can't'.’

Enjoying food

Anita wanted to take care of him herself for as long as possible. ‘I learned all the nursing procedures from Ed, such as inserting and cleaning the catheter and the feeding tube. He was incredibly patient by nature and a good teacher. That’s also how he was known at work.’ Anita applied for a personal budget and stopped working, because the care took all day. Professional help also came in. ‘Eating alone took hours, because Ed had to concentrate well when he ate. But he enjoyed food immensely; he did that for a long time. He did get heavier and heavier because he no longer moved; he weighed about 120 kilos. When Ed could no longer speak, he got a speech computer that he could operate with his eyes. His patience was a gift, because everything took a lot of time, including communicating. That sometimes frustrated me immensely.’

Donor organ brings salvation

In 2016, Ed announced what he wanted: euthanasia and organ donation. Euthanasia usually happens at home. But that was not an option, because the organs must be removed as quickly as possible for transplantation. Anita says: ‘Ed wanted to be put to sleep at home in our presence and then go to the hospital for the donation. We respected that wish.’ Ed thought donation was important. ‘In the ICU, Ed often nursed people for whom a donor organ brought salvation. He wanted to contribute to that personally. We also registered as donors immediately when the Donor Register was created in 1998.’

It was a question of whether Ed's wish to go to the hospital while asleep could come true. ‘A regular stretcher with all the equipment next to it didn't fit in the elevator, and Ed had to remain on a ventilator. To come up with a solution, we called in Wim, an old colleague of Ed's who dealt with organ donation a lot. The gears in Wim's head worked overtime to fulfill Ed's wish. It was a quest, but it worked. Indeed: there is no such thing as 'can't'.’

Laughter

At the beginning of 2019, Ed indicated that he had had enough. He was 63 at the time. 'He couldn't move anything at all, except for a thumb and his eyes. He used those to communicate, because his mind was still working perfectly. But his body was completely stiff. His face was also tight and expressionless. That disappeared when he passed away; he became the man I had fallen in love with again.' The last weeks were beautiful, says Anita. 'The children came home, and even shortly before Ed went to sleep, we laughed at a silly joke. I thought: if you know these are your last hours, what goes through your mind? We read him the stories for the funeral and played the song by Danny Vera, which had just been released. Later we heard that everywhere, and then we had to think of Ed.'

Part of him

Everything went as Ed wanted. Wim had organized it well: the permission, an available operating room, and staff, Anita says: 'Everyone who cooperated did so voluntarily. Fantastic.' Ed was able to donate his kidneys and liver. 'That gave me a lot of comfort. I found the first Christmas after his death difficult, but it helped that I knew the recipients of his kidneys didn't have to be on dialysis that Christmas, and not after that either. That was not only very nice for those people themselves, but also for their families. So Ed helped many more people. It also gave me support in the grieving process. And I think it's a beautiful idea that a part of him is still alive.'

Chips in bed

Anita had to get used to living alone. 'The sound of the ventilator was gone. That's why I slept with the TV on in the beginning.' She did appreciate the freedom she gained. 'I missed him enormously, but I wanted to move on. I didn't feel guilty about that after 5 years of intensive care. When I went on holiday to Mallorca alone, the children said: do you dare to do that? But I met a couple from Berlin that I spent a lot of time with. Since then, we coordinate our holidays. Not to spend the whole day together, but to eat together. Now I only find New Year's Eve difficult. Then I prefer to be alone.'

The grandchildren are still important. 'If I didn't have them... They are now 8, 7, 5, and 2, and the youngest is six months old. They are my everything. We do groceries together and they are allowed to sleep in the big bed with me when they stay over. Then we eat chips in bed, which they aren't allowed to do by mom. But that's part of being a grandma.'