Teun Toebes shares his living room and bathroom with his roommates, just like many students in Utrecht do. However, Teun has been living in a closed ward in a nursing home for people with dementia for over a year. Not because caregivers think this is best for him, but because he wants to know what it is like to live there and experience how dementia is dealt with. This week he released his book and that is immediately a spicy indictment.
It is not always easy, living in a closed ward. The 22-year-old student of Care Ethics and Policy is the only resident who has the code for the entrance doors and can therefore simply go outside. “But when you live there you feel really cut off from society.” People with dementia can be a danger to themselves or to society, but locking these people up in anonymous and fenced buildings is not the solution, Teun believes.
In the book he writes about his first day: “My new house is unfortunately no exception. Right next to the busy ring road of Utrecht you drive into a large gated parking lot, on which an even larger stone building has been placed. The stones are light in color and are occasionally interrupted by a horizontal line of gray stones, a typical design for an institution.”
Over the past year, Teun was regularly asked by friends and family why he would want to live in a nursing home at all. “It is my mission to improve the quality of life of people with dementia,” he says. To reinforce his goal, he went to live among these people and wrote the book VerpeegThuis. With the book he gives an insight into daily life in the nursing home in Utrecht. From the residents’ toilets where there is always the smell of incontinence material, to nurses who mainly have to tick off tasks, to tying up residents. It’s all covered.
He describes his book as a tough indictment, not against healthcare workers but against the way in which we as a society deal with people with dementia. “I also consciously say people with dementia and people who do not have dementia. They are so much more than just the diagnosis they have been given and which they live with on average for another eight years. We don’t talk about cancer patients or cancer house either. It creates a stigma that we need to break right now.”
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“The world of people who are diagnosed with dementia quickly becomes very small. They are tucked away and almost everything is decided for them. People talk about them, instead of talking to them. They are socially killed before their hearts stop beating,” says Teun. “The number of people with dementia will increase sharply in the coming years, we now need momentum to change healthcare.”
But isn’t it a question of money? “I argue that we should especially look at care differently. It is time for a wave of enlightenment in which we have to deal completely differently with people with dementia. I also believe that all healthcare workers have entered healthcare because they are people, because they want to care. Everyone wants change. But the current system is made for ticking off tasks.”
Festivalcaravan
Although Teun did not go to live in the Utrecht nursing home specifically to make a difference there, he noticed that he could make a difference. For example, Teun asked if he could put his festival caravan in the courtyard for a few days. In the book he writes: “The idea is met with a big smile, after which my housemates can spend summer evenings in front of a caravan for the first time in a long time, with all-inclusive wine and tropical music. Just like on holiday with friends, I notice that the dynamics change completely. The new place, the music and the sun provide a relaxation and cheerfulness that I have rarely seen. The holiday stories of the past become sultry and sultry as the wine warms up in the evening sun.”
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Teun also decided to organize a weekly Friday afternoon drink. That too was a success. Although one of his housemates had to get used to specialty beers with a name like ‘Mannenliefde’. In the book it is described: “’What kind of name is that for beer? That’s not normal is it? Or is it, Teun?’ he says, crowning the bottle like a skilled bartender. ‘Yes, Ad, that’s totally hip now. It was made by an Amsterdam brewery.’ It looks like Ad is completely fascinated by what he has pulled out of the fridge. ‘Saison… All very strange, but okay, that would suit you.’” The book also includes a silent disco and visits to the outside.
Teun still lives in the closed ward. The book he has now completed has already brought about a lot. Teun also praises Axioncontinu, the institution that dared to take him in. There is a lot of media attention and the book even received a response from Prime Minister Mark Rutte. For Teun, his mission is far from being successful. The book is only a means in his life mission. “The most important question is: how would you like to be treated? If you answer that question for yourself, it is immediately clear how big the difference is with the way we deal with people now. It is essentially about equality. The book is a cry from the heart and I hope everyone takes my message.”
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