‘I’m 24, perfectly healthy – and I live in a nursing home’
In almost any shared house, there’s always a party room: an unofficial hangout, away from the designated social space but used far more. It tends to be well stocked with booze, hip records and soft furnishings. It’s normally a bedroom, belonging – in the loosest sense – to the most gregarious, extroverted member of the gang. And the door is always, always open.
In Teun Toebes’ gaff, which he shares with 14 housemates in a sprawling pad just south of Amsterdam, the party room is most definitely his. ‘You want something to drink?’ he asks, settling in his retro desk chair. In a far corner, beside a box filled with multicoloured trainers and past a shelf stacked with 1970s pottery, I spy a miniature off-licence. ‘I’ve got basically everything.’
We settle on water, and Toebes, 24, closes his bedroom door for once. Without doing so, his pals are prone to wander in for coffee, or something stronger, or peanuts (he has a pub-style dispenser), or just for a chat. ‘Sometimes they just come in and sit with me while I work. It’s really nice.’
The room is small and artfully cramped, but most people have small rooms at his age. There is, at least, a huge window through which a garden can be seen at one end. Decent view, I say. He only vaguely agrees. ‘It’s really nice. But isn’t it crazy, how everyone in this place can see that garden, but can’t go out into it themselves [unsupervised]? Only I have the code. I created a home, because I am allowed to. Others can’t.’
Toebes is not a normal 24-year-old by any means, and nor could his living arrangements be considered mainstream. A cognitively fit and healthy young man, he has chosen to live on the dementia ward at Verpleeghuis Groenelaan (Green Lanes Nursing Home), ultimately just to see what it’s like.
If that sounds like a curious lark, it often is. Toebes, who is a qualified nursing-home carer, moved into a previous facility in Utrecht as a live-in staff member almost three years ago, but has been here for the last year as a mere resident. He is now publishing a book in the UK, The Housemates: Everything One Young Student Learnt about Love, Care and Dementia from Living in a Nursing Home, which not only celebrates the joy of this particular form of intergenerational living, but irradiates the often-grim truth of life in Western dementia care.
Already a bestseller in the Netherlands, it is a lovely and humane book, and, in a way, the basic idea is gonzo journalism: everybody knows about nursing homes, many people have cause to visit them, and we often hear from remarkably selfless, grossly overworked staff. But given the nature of these institutions’ role in end-of-life care, it’s rare to hear a clear perspective from the residents themselves. By literally embedding himself, Toebes is able to give that account for the first time.
‘I really wanted to experience it,’ he says, rocking on his desk chair. ‘Of course, I don’t know how it is to live with dementia, because I don’t have dementia. But by living with people with dementia for three years, I know a lot about life in an institute, and I listen to people. In fact, listening to people is the main thing I do.’
Toebes is an eccentric character. Rake thin, wearing a rainbow-coloured woollen jumper (it is 28C outside), with large glasses, immaculate teeth, expressive limbs and a helmet of bouncy brown curls, he looks like the product of a young child instructed to draw ‘a person’. A happy person, though, and unwavering in not just his love and support for his housemates (he makes a point to equably refer to them this way, never as ‘patients’), but his commitment to improving their lives, too.
Verpleeghuis Groenelaan is a fairly typical nursing home in the Netherlands, and looks not dissimilar to many facilities in the UK. (Proportionally, the two countries’ nursing and care home populations are alike in numbers, too, at around 0.7 per cent of the population.) Adjacent to a hospital, it has wide corridors with lingering steel trolleys parked halfway up. Wheelchairs are left outside doors, televisions are turned up loudly, uniformed nurses potter by, speaking clearly and slowly to shuffling residents.
The paintings are dreary, the plants are fake. In fact, bar the humans, a lot of things are fake, like the toy cats given to residents who used to own the real thing. ‘Instead of letting them feel life, they think it’s easier to give them a plastic version,’ Toebes says, as we pass the faux-cattery.
He and the 14 dementia patients live on the ‘closed’ ward (there are 126 others in the wider nursing home), meaning ‘for their safety’ they cannot leave. Toebes, given his unusual position, is the only resident on the closed ward who knows the code to the front door, through which is the garden, the car park, the shops, the world.
‘The manicurist comes to us, the supermarket comes to us,’ he explains, ‘all so that we don’t participate in society any more.’
The eldest of four children, Toebes was born in Brabant, in the south of the Netherlands. His mother is a psychiatric nurse, his father works as an accountant. ‘My biggest dream as a boy was to become a paramedic,’ he says.
As a child, he rode his bicycle around with a first aid kit on board, looking for injured people. A degree in nursing became inevitable, but he ‘had a negative view of nursing homes’, so dreaded it when he was sent, aged 17, for an internship at a local one.
‘I remember walking through the doors for the first time, and them closing behind me. It felt like I was in a surreal no-man’s land. I realised we are excluding people from society based on their illness. It really made me worry about the future of people with dementia,’ he says.
‘It was my own future, too. At 17, I realised I had a chance of being diagnosed with dementia in the future. The chances worldwide are one in five. And at that age I saw a couple of things: on the one hand, the pain caused by the system, which focuses on control; and on the other, the beautiful people, who I built up strong relationships with.’
It lit a fire in him. During that internship, he had one particular friend, John, an ‘old boy with Parkinson’s’ who trusted him to the extent that Toebes became the only nurse John would allow to trim his moustache. Toebes used to take him out for drives.
‘I didn’t see him as a sick person, I saw him as a friend. But when we came back, what the carer said wasn’t, “Wow, John, you look so happy,” or, “What a big smile on your face, John!” but he just said, “Teun, do you have insurance for this?” That made me clear that we may have good intentions, but the focus is not on the quality of life of the people who have to live with dementia or Parkinson’s.’
Over time, this frustration grew: he felt that residents were often being contained, and coddled, rather than being allowed to live rich and full lives until the end. ‘I thought, if I start living in a nursing home, I can experience this for myself.’
That was during lockdown, when nursing homes were under strain all over the world, ‘but I really wanted to, because I’d learned so many techniques and methodologies as a nurse, and one of the key things is to listen without an aim. But as a carer I know all their information, their health status, their legal representatives, everything. As a housemate, I would only know what they share with me. So I meet them as they are, which is human beings.’
He moved into that home in Utrecht, where he was still studying, in 2021. His young friends initially were ‘like, “What the f--k, why would you want to do that?”’ and he knows it’s strange. But he feels that ‘living with people with dementia is something we are all going to have to do’. Friends got used to it, though, given he’s always banging on about dementia care anyway.
His mother, on the other hand, laughed and simply said, well, ‘I didn’t think you’d be moving into a nursing home before me…’ And his bosses were shocked: unsurprisingly, they’d never had a request like that before. But they acquiesced, offering him a space free of charge, given there were plenty of spare beds and his aim was noble. In the Netherlands as in the UK, where staff shortages rose 52 per cent to 165,000 vacancies in 2022, the issue is less to do with space or funding in the sector, and more to do with a lack of workforce.
Toebes loved that first home, where he’d do TikTok dances with housemates (if he posts anything online, he always gets permission from their legal representatives) and sought their judgment on his Tinder matches.
He made a best friend there, Ad, a 79-year-old dementia sufferer, who he’d take out to coffee shops and shoot the breeze with, watching him come alive. ‘On days when he was in his room, he’d watch the same TV programme three times in a row and not realise it, and the carers would simply relieve pain. He would be stuck.’
From that first home, everybody but Ad is now dead. How many friends has he lost? ‘I don’t know,’ he says, looking to the floor, ‘a lot.’
Toebes concedes he had to ‘partly give up the life of a 21-year-old, but I don’t exactly know what I gave up, because it has made my life richer. It doesn’t mean I don’t have friends of my own age, of course I do.’ And sometimes stay out late, partying? ‘Of course, I’m 24. What do you think? When I come back, I have to ring the bell and say “Teun Toebes, ward Theaterhof”, then the electric front door is opened by the night shift.’
A typical night might involve a one-to-one with a housemate. ‘For example, Willeke often comes for a cup of tea, or Jopie comes to ask for crisps.’ Or he’ll go for a run – he has two marathons booked. A hobby is collecting retro interiors pieces, and he’s just finished a Master’s degree in care ethics in Utrecht. Between that, a second book and a documentary, he always has plenty of work to do. The latter, in addition to speaking events, is how he earns his money.
He can call his young friends whenever he wants a change of scene, but they don’t visit. His father has also chosen never to stop by. ‘I think it shocks people, it makes them confront their own existential feelings: “Is this my future?” So mostly I have to go to them.’
I think I know the answer to this, but wonder if he has a partner. ‘Um, no.’ Could he have somebody back? ‘I could, and did, but…’ He laughs, then leans back further on his chair to yank open the door. Outside in the frighteningly lit corridor, a resident wheels past, in front of a trolley and a disability lift. ‘This environment is not… romantically stimulating,’ Toebes says, for confirmation.
It seems like a good time to meet some of the housemates. Toebes bounces up and greets everybody he sees in the corridor. We approach one open door to find Johanna, a 97-year-old from Rotterdam, watching television in her room. Toebes moves in close, as he does with all his housemates, making sure they see and acknowledge him, before asking about her day. She has been here, she says, for five years, but ‘I preferred living at home, it was better’.
She talks us through some photos on a side cabinet – her last husband, her children, the daughter she lost – and gradually becomes more fluent. ‘This is good, what we are doing, talking like this without pressure,’ Toebes whispers to me, ‘but what the housemates need is life. And what the nursing homes emphasise is death. Just look at the fake plants.’
The plants thing, he explains in the corridor, is because the nursing home thinks people with dementia will try to eat real flowers and foliage. It is a rule he sees as hyperbolic, cruel and unnecessary, and errs so far on the side of caution as to be laughable. But he witnesses examples like that everywhere, from his run-in over car insurance to the locks that keep his friends away from even the reception area. A little laxity would go a long way for quality of life, he believes.
‘I’m the last person who’d say that safety is not important for dementia sufferers. But it is a balance between safety and quality of life, and the system focuses on safety. So if there is one incident, we’ll create a new rule to make this incident impossible in the future, for the whole collective,’ he says. Lockdown sent the rule-makers rampant, he recalls, and many new edicts stuck.
‘The phrase “person-centred care” [the idea that people are given the confidence to be involved in their own care] is the most common buzzword in care at the moment, but it cannot work if we are treating them as a collective. The number of people with dementia is growing, but I believe we make that a problem by seeing those people as a problem.’
It’s partly why he’s here, in a typical nursing home, and not in any of the groundbreaking ‘dementia villages’ dotted around Europe or brilliant care homes that ‘get it’. He wants a simple revolution, starting with ‘the most important and fundamental change’, which is how people with dementia are viewed. ‘Now, people with dementia are seen as their disease, leading to social death.’
I wonder if he meets resistance from leaders in the care sector, whose facilities and outlook he is ultimately exposing as inhumane and unfit for purpose.
‘Of course, but it’s never a personal attack. And it’s OK when people criticise what I say, because change comes with resistance. People don’t have to say, “Amen, this is it!” because every context is different. There isn’t one solution, other than changing the way we see people with dementia. I strongly believe looking differently is doing differently.’
As we round a corner, we catch up with a wheelchair piloted by 89-year-old Christel, who is originally from Harlem and drips with gold jewellery. Toebes introduces me, which is enough to start her on the story of how she was once rich, but is now in a dispute about the control of her finances.
‘I had a good mind, I could speak five languages. But nobody would believe it now. It’s like a prison here, it’s very bad. I’d like to go out when I like, not when they say so. The people, like Teun, do their best, but the system we live in has no freedom.’ She sighs. ‘I would rather be dead than living here.’
Toebes lets the comment breathe. She speaks again to reveal that, by the way, her daughter has changed her brand of underwear to something far cheaper, and she doesn’t like it.
‘That kind of thing doesn’t seem important to us, but it is important to them, having the same things here as they did before. It’s freedom, and a form of dignity,’ he says, as we move on. It’s easy to forget, in such a hospital-like environment, that this is his home. Several residents mention how bad the food is.
Toebes agrees. If he’s here, he and everybody else eat at precisely 5.09pm (‘I don’t know why’) every day. ‘And the gravy is the same every day. I can taste it now…’ No wonder the residents – and their families, who frequently give him gifts to thank him for enriching their relatives’ lives – relish it when he takes them out for meals, cocktails or picnics.
At a table, Willeke, an 87-year-old who pops into Toebes’ room for proper coffee every morning, is sitting with her daughter, Marcella, who is visiting.
Marcella laments the state of the system her mother has to exist in, but a court ordered Willeke to move into a dementia facility. ‘She is not here voluntarily, and that’s sad, but it’s common.’ The staff, she says, are brilliant, ‘but we need to change things’.
‘So,’ Toebes says to me as we wander back to his room, ‘would you like to live in a nursing home if you had dementia?’ I would not, I say.
‘Why?’
Well, I’d miss my loved ones, and freedom, and I don’t think I’d feel much better for being somewhere like this…
He nods vigorously. ‘Exactly, yes.’
He feels an urgency, he says. His grandmother now has dementia. Currently she is at home, but at some point, she will likely be moved to an institution like this one.
As for him, he cannot do it like this for ever: the party room will close at some point. ‘I don’t have a plan for how long I want to live here, but I have a very strong mission, which is to improve the quality of life for people living with dementia.
‘So we’ll see. I really appreciate the friendships here, but it’s not always nice to live in a nursing home.’ Still, he is on a mission. ‘The fact I’m living here as a young person in an old world? It makes us ask a question. Why do we do the things we do?’
In his own words: Teun Toebes on why he decided to move into a care home
Everybody assumes that dementia runs in the family and it does, but that was certainly not what first drew me to it. My interest was piqued on a work placement during my nursing course. I ended up on the secure unit of a nursing home dedicated to people living with dementia. I must confess that it was a lot to take in, as what I saw didn’t exactly correspond to the idea I had when I enrolled in the degree.
Perhaps I was a bit naïve, but, like many, I grew up with US television series about handsome doctors and young nurses who save the world while busy dating each other. Of course, I knew that this portrayal of the care sector wasn’t entirely accurate, but the reality was such a let-down that I wanted to call it quits straightaway.
Those people who sat around long tables staring into space all day made me feel uneasy. Was this my future, I wondered? What difference could I possibly make in this dreary world?
When my mother, who works in the care sector herself, heard me moan about my degree choice, she told me in no uncertain terms that quitting wasn’t really an option. ‘Good care can only be provided by caring people and if there’s one thing I know, my boy, it’s that you’re one of them.’ I took the compliment and, a week later, I went back to the ward with some healthy misgivings.
I had a look around, chatted a bit and had the odd cup of tea. Then I suddenly realised something that, as an adolescent boy, I really didn’t want to: my mother was right! Right from the off, I enjoyed my contact with the residents, especially when I met John Francken, a former construction foreman. It was because of him that I grew to love the care sector as well as people with dementia, and not least him. He showed me, a 17-year-old, that as a society, we don’t properly understand ‘the nursing home resident’ because we just don’t want to accept that ‘they’, in their own remarkable interior world, have exactly the same needs as ‘we’ have in the outside world.
‘Listen up, Teun,’ John said. ‘My whole life, I got treated normally, until the doctor said: “You’ve got Parkinson’s.” It was all downhill from there, not so much with me, but more with the way people behaved towards me and talked about me. The contact with my old workmates changed, neighbours looked at me differently because they were sorry for me and I was constantly being asked if I was all right. So basically, my life as a normal person was over.
‘And I don’t blame them, pal, because nobody on the outside knows anything about this bloody disease. But what I do mind, Teun,’ he continued, ‘is how I’m treated in here, where it’s full of people who have something wrong with them and who bloody well know it. You’d expect the staff to recognise that we’re not barmy, that we’re not all the same or at the same stage of the illness. Shouldn’t we be normal in here, of all places? But they’re treating me like I’m bonkers. They forget that the man they’re looking at has had a good life and used to enjoy the little things – a bit of banter, a joke. They forget that this very same man still loves all that, even if I’m confused sometimes and I forget things. I may be forgetful, but from the day I moved in here, pal, they’ve forgotten about me, not the other way round .
‘Gulp. For a moment, we looked at each other, speechless and with tears in our eyes. For a moment, there was no tough guy sat opposite me, but a human being with the sweetest yet saddest expression. Then I cleared my throat and said gently: ‘I won’t be doing that, John. I won’t forget you, I promise.’
Because of that promise, I felt I had something to prove to John, and that is that as a society we can listen to him and the thousands of others living with dementia. John not only became my buddy, but the inspiration behind my mission to improve the quality of life for people with dementia.
In my free time, I’d go out for ice cream with John. We’d laugh at some of his ‘builders’ jokes’ and we’d race around the village in my car. And, as the icing on the cake, yours truly, a somewhat vain nurse-in-the-making, was the only one on the ward allowed to trim John’s moustache. Perhaps not that great an honour on the face of it, but anyone who knew John would understand. John not only taught me to really look and listen to people with dementia, he also showed me something I hadn’t been able to see during my first visit: the human being behind the illness
Extracted from The Housemates, by Teun Toebes (September Publishing, £12.99), out on 3 August. To pre-order from Telegraph Books, call 0844 871 1515 or visit books.telegraph.co.uk
