Kees Vos (62, day care supervisor) died on July 7, 2021 as a result of a brain tumor. He was married to Rianne Waanders (now 58, regional director of care for the disabled) with whom he had three children: Niels (32), Jort (30) and Myrthe (25).
Rianne: ‘In April 2019 I received a phone call that Kees had become unwell at work. His colleagues had called 112 and he was taken by ambulance to the hospital in Leeuwarden. That same afternoon, a scan of his head revealed that it was not right. An MRI was done two days later. We asked our oldest son Niels, who is a doctor, to come along. In retrospect I don’t know if that was wise, because he got the fright of his life. My son saw his father’s head on the left of the screen, his father himself was sitting on the right. Because he was able to interpret the photo, he saw the tumor and the dead brain tissue. Kees had to be operated on quickly. After the operation at the UMCG, which was actually not that bad, we got the final results. The neurosurgeon made no bones about it, it was bad news from the books: ‘You have a glioblastoma grade 4, the most severe stage. You are terminally ill and the treatment only serves to prolong life.’ This result was subject to a standard treatment protocol of chemotherapy and radiation for a period of nine months.
A month before Kees became ill, his mother had died of Alzheimer’s. She went through the disease from start to finish and dying was also an endless process. Kees has always said that he absolutely did not want that. Now that he knew he was sick, he said it again. He went to the doctor with a note on which he had written: ‘If I’m staring at the ceiling and I can’t remember I’m staring at the ceiling, I want euthanasia.’ I told him I felt responsible for that too, and promised him that he wouldn’t have to go to extremes.
alarm bell
In June, the weather was beautiful, I came home after work and to my surprise saw that the beds in our garden had been razed to the ground. At first I made a joke: ‘Gosh, has the garden been hairdressed?’ Kees reacted seriously: ‘It is very important to prune well’. I was perplexed, as a real garden lover he would never do this otherwise. He didn’t understand what I was worrying about. An alarm bell went off in my head, I suddenly realized that his illness was affecting his behavior. I sat in the back garden mourning late at night. For the first time I was aware that his mental capacity would play an important role in his desire to remain in control.
Kees underwent several treatments and a second operation, but he has never been angry, nor has he ever complained. He was afraid of death, he didn’t think it was time to go yet. Once when I was cooking, he came up to me and asked crying, ‘How can I do that? How am I supposed to say goodbye to you and the kids? How do I do that?’ There we were together in the kitchen. As we held each other, I said, “I don’t know how to do that either, but we’re going to do it together.”
On February 16, 2021, in response to an MRI, the neurologist literally said: ‘We did everything we could do. Further treatment is now pointless.’ Kees reacted quite calmly. He didn’t want to mention the word resigned, because he didn’t think he resigned himself to it, but there was a switch. Kees still wanted a weekend away with the children and the neurologist advised not to wait too long. “You have to think in weeks,” she’d said. My work gave me the opportunity to take palliative leave. We went to Otterlo and there he gave each child a book from the bookcase about shared interests: his favorite artist Joseph Beuys, the Second World War and photography. It was symbolic and valuable.
Bonus time
And then the bonus time began. Although he was in decline, he enjoyed the spring immensely. He shifted the things he had first marked as a boundary. He had initially said that he wanted euthanasia if he could no longer read a book or if he was no longer self-reliant. But the tools came into the house and he adapted. He also fooled us quite a bit for a while. When he was reading I thought: yesterday you were on that page, and the day before too. I found it difficult myself. Wouldn’t it be weeks? He was going to die right? I felt burdened by my job, I have a responsible job. Kees himself did not bring up euthanasia. On the contrary, when I brought it up, he said, “It has yet to land.” I struggled with my promise to spare him an ending like his mother’s.
Because I didn’t understand what was going on in his head, I decided to ask the neurologist for another MRI in early June. She was open to that, because she didn’t really understand how it could take so long. The MRI showed that the tumor had grown in a different direction than they had expected in February. They then thought that he would end up more intense in the motor part, but he sat down in the area where planning, overview and awareness of illness were. That explained why Kees could no longer oversee it all. I asked the neurologist about his mental capacity. To which she replied, “It’s hanging by a thread.”
Together
One of my children suggested, “Maybe you should explain it to Dad in yip-and-janneke language.” Then one evening, we were sitting opposite each other at the table, I told Kees very simply: ‘You can no longer walk and if you are completely paralyzed you can no longer stay at home, then you have to go to a hospice.’ He looked at me and said, “But I don’t want that. I don’t want to end up like my mother.’ Since he could no longer write or text, I suggested that he send me voice messages that I would type for the doctor. He sent them out for several days in a row as he needed to be consistent in his story, saying he didn’t want to go any further back. The GP agreed, as did the Scen doctor.
Wednesday 7 July was a beautiful day with a clear blue sky. Together with the children and a brother of Kees we made this day as pleasant as possible. We said goodbye to Kees, and Kees to us: ‘I loved you very much, please make the best of your life.’ When I asked how I should do it later, he replied: ‘Go into the garden and put your hands in the ground.’ In the meantime he ate three more currant buns. Just before the doctor came at 5 o’clock, he wanted to go to the toilet. When he got the sedative, I sat by his head and hugged him saying, “I’m with you.” He puffed twice, and that was it. I had kept my promise and carried my responsibility. We managed to do it together.’