Janneke (49) lives in a nursing home for the elderly: “I would love to talk to my peers”

Janneke (49): “For a long time I tried to ‘just’ keep going: I worked, had a social life, got married and had two daughters, but due to my severe asthma it was not sustainable. Due to shortness of breath I often had to cancel work or appointments at the last minute. When I cooked for my daughters after a working day, I was so exhausted afterwards that I often couldn’t join them for dinner. “Dinner is ready,” I would text them before they got home. ‘I’m lying in bed.’ When I had an allergic reaction three years ago, it quickly became clear that medication would no longer help me cope with my attacks. I had finished my treatment and would need so much care for the rest of my life that I could no longer live in my adapted home. I had to go to a nursing home.

Palliative due to asthma

I have had severe asthma all my life. My airways become irritated by almost all stimuli: dust, air pollution, smoke, damp weather, perfume, animal fur, dust mites. It results in extreme shortness of breath, pain in my lungs or respiratory infections. As a child, I would get out of breath when I was laughing with friends, exercising in a dusty gym was impossible for me and I was almost always sick. Many children have asthma, but what I had could not be combated with any puffer. And now no longer with other medications. I am on palliative care, as they say. The care I receive now is only there to make my life as comfortable as possible. I believe you have no influence on the wind, but I believe you can influence how you set the sails. I have always done my best to make something of my life despite my illness. It is almost unbelievable that I will die from my illness. Sometimes I wonder why this happens to me, but I am also realistic: my quality of life is more important than my time of life. And my quality of life deteriorates sharply. I need constant oxygen, can no longer walk and spend three quarters of my day in bed. I can no longer wash or dress myself and I need help with everything. There is no longer much quality of life. That’s also because of how I live.

As a young woman among elderly people

I have been looking for it: a nursing home where you as a young woman can live among peers. And they exist. There are nursing homes for young people with congenital brain damage, there are nursing homes for young people with dementia, but there is almost nothing for young people with somatic complaints. I found one nursing home with a department for young somatic patients, but there you live in a group and you only have a bedroom for yourself. Furthermore, there are almost no housing options for people like me. I belong to a forgotten target group. And so you end up in a normal nursing home with physical complaints, among the elderly.

Stories about the past

People twice my age live here in the nursing home. As the benjamin of the department, I have a special place. I can call all my fellow residents by their first names, although that is sometimes quite awkward when someone is ninety years old, and people like to chat with me. I only stopped working in education a few years ago, some people here were in the profession sixty years ago. We exchange stories about what it was like then and what it is like now. That’s quite nice, but also strange for someone not yet fifty. Friends around me continue with their lives. They work, develop, and talk to peers about the now and the future, not about the past. I want that too. But for young people with physical health problems, there are no nursing homes where you live among peers.

Singing old Dutch songs

The care is fully geared towards the elderly. There are activities such as singing old Dutch songs, flower arranging or painting. That is sometimes entertaining and I have made some nice contacts from it, but as a 49-year-old I want something different. I want to have drinks on a terrace, just like my friends. I want privacy, like women my age normally have. Instead, the cleaner just walks into my room with new towels and the nurse can open my front door unannounced with a card. Most elderly people here find it nice that someone regularly comes in for a chat. I would rather feel a little more independent. Fortunately, in addition to my own bedroom, I also have my own living room, but it still sometimes drives me crazy that any employee can just drop in and I am never really alone. Because my room is not entirely mine, I have not been able to turn this house into a home in two years.

I miss autonomy

I miss autonomy, being competent, taking my own direction. I miss being able to decide for myself what time I want to have breakfast, what time I want to get out of bed and when I get washed. After careful consultation, I have now been given more autonomy on many fronts, but it was not self-evident. Healthcare still sometimes discusses my health right in front of me, even though there is nothing mentally wrong with me. People talk about me instead of with me. I am not from yesterday, I am a woman in my forties and I am very clear. This makes me one of the few in my department.

Talking to peers

What I would most like to do is not possible. My daughters and friends visit me as often as they can, but I think it would be so nice to be able to go out with them. Or to work on my career, just like my friends, and to develop myself while looking ahead. That is no longer possible for me. I would like to taste a little more of it. How nice would it be if the nursing home involved the neighborhood in its activities? When I meet people I can identify with and with whom I can discuss things that women my age discuss? Children studying, beautiful holidays… Sometimes I fantasize about working again and having colleagues with whom I discuss this. It’s only when you no longer have them that you realize how important they are. Because I no longer meet peers, it often feels as if I am standing next to society in the nursing home instead of in it. In the meantime, I am constantly confronted with reality: people here live day by day, someone dies regularly. And although I know that part is coming for me too, I really want to participate while I can.”