‘I’m 24, perfectly healthy, and I live in a nursing home’
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
Source: The Telegraph
