Hans, who does not want to or cannot name his age, still thinks about Ineke, the architect every day. “We came from very different worlds and normally I would never have met her. Here we became best friends. We could discuss everything together. Until she got too confused. When she said goodbye, she treated Domtorentjes. Then she got into the taxi and disappeared. She would never come back here. It was one of the worst moments of my life. And I wondered: when will it be my turn?”
The question that hangs almost tangibly in the air in the Odensehuis in Utrecht: when? When do I get so confused that I have to say goodbye? When will I lose my way for good? When will the dark hours of oblivion come for me?
Because that moment will come – sooner for some than for others – that has marked the lives of visitors since they were diagnosed with ‘dementia’, often only after years of uncertainty. This applies to Joke, the small quiet woman with short white hair who worked at V&D, plays the recorder and only talks when asked a question, and Wim, the former professional soldier who always makes the soup, although he has never been in cooked his life.
For L., who knows a lot of people in the city and therefore not even with only her first name in NRC wants, because “everyone immediately knows what’s wrong with me” and for Willem with the trendy shoes, who calls himself “an angry man”, but since his illness yearns more than ever for contact with others. For the “prominent presence” Hans, as he describes himself, who through his illness has discovered the beauty of the small everyday and for Jenneke, the intelligent, well-spoken former art teacher with the tousled gray hair and eyes in which there is sometimes so much despair that it hurts to look inside.
They share the knowledge that the same fate awaits them as Ineke and all those others who went before them: an ever-increasing disintegration of their personality until, after years of agony of fear and confusion, death may come as a liberation. There is no way out of the illness that so unexpectedly overtook them, no hope of a cure.
Which by the way does not mean that there is a continuous grave atmosphere in the Odensehuis. On the contrary: it is remarkable how much there is laughter and how light-hearted the mutual interaction is. Jokes and cheerful anecdotes fly across the table.
Especially Hans knows how to create a good mood with his stories. “I was very naughty on holiday in Spain and drank a glass of beer on a terrace. It’s not allowed, but it was nice to me anyway!”
Although one person does not always immediately find the right word and the other needs a little more time to formulate his sentences, you are quickly inclined to forget that these are people who suffer from a hopeless disease.
And that’s how it should be, says Domien Schuurmans, one of the two professionals at the Utrecht Odensehuis: “With us you are not a patient, but a person like everyone else. We offer space for in-depth conversations and sharing emotions. That is certainly important. But it’s also about having fun. Nothing is needed here.”
The Utrecht Andante is one of more than forty Odensehuizen in the Netherlands. They are named after the Danish city of Odense, where a group of people started a low-threshold walk-in for people with early dementia shortly after the turn of the century. The first Odensehuis was built in 2008 in Amsterdam. Since 2016 there has been a National Platform Odensehuizen.
Odensehuizen are a private initiative and fall outside the regular healthcare world. Anyone who subscribes to the objectives can start an Odensehuis. The houses mainly run on (municipal) subsidies and donations from funds and work largely with volunteers, so that costs remain low and participation is accessible to everyone.
Schuurmans: “We focus on the large group of people who have been diagnosed with Alzheimer’s or another disease that causes dementia, and who are often already struggling with the consequences. But there is an average of ten years between the diagnosis and the time of death. In the first five years, most people are too ‘good’ for daytime activities at regular care institutions and are still willing and able to do everything. We help them to develop their talents. Whether it’s making soup, drawing, writing, making music or taking pictures. We organize activities in and with the neighborhood and make trips. But even if you only come for a cup of coffee, a chat or lunch, that’s fine.”
They are mostly in their sixties and seventies, the approximately thirty regular visitors to the Odensehuis, which is located on the top floor of a community center in Utrecht-East. They suffer from conditions that cause dementia, but their disease is still in its early stages. They know and notice what is wrong with them and are on the alert enough to talk about it.
There is, says Willem about his current life, „a Willem from before the dementia and a Willem from after. One person, two separate worlds. I am no longer who I was and never will be. That is difficult to accept.”
“Dementia is terrible. It turns your life upside down,” says former teacher Jenneke. “Step by step you lose everything, the simplest things no longer work and all your future plans fall into the water. That is intolerable. But here I meet nice people who only need half a word.”
Outside in the street Hans is smoking a cigarette, leaning on his stick. He is convinced that his time is finite, he says with unmistakable Utrecht accent. “You go backwards and you notice that time and again. Sometimes I come downstairs in the morning and suddenly I don’t know where I am anymore. That’s very scary. Doomsday scenarios are always running through my head. Sometimes I’m just really scared of what’s ahead of me and I really don’t see it anymore. But sometimes I also think: what nonsense, there is nothing wrong with me. What keeps me going are the people I meet here and with whom I can share everything. And the unconditional trust I have in my wife.”
Partners of people who suffer from dementia are also welcome in the Odensehuis. This morning, Udo (82) is the only partner participating in the ‘thought room’, the activity in which visitors, led by discussion leader Harry Veenhoven, talk to each other about a theme they have put forward. Today that is: ‘Be kind to each other, take care of each other.’
Udo knows all about that. He has been taking care of his demented wife who still lives at home for years, and that is tough: “It is getting worse and worse and with every step back you have to learn to deal again.” Udo fears the moment he will have to hand over the care of his wife, because it becomes too much for him. “As hard as that may be, letting go is also love. Until then, I will continue to take care of her. I draw my strength from the memories of the beautiful life my wife and I had together. I have to deal with that, because there is nothing more.”
A version of this article also appeared in NRC Handelsblad on 20 September 2021
A version of this article also appeared in NRC on the morning of September 20, 2021