The school dropout
I’ll never forget the time I dropped out of school. It was all a matter of principle, standing up for my rights, letting people know who they were dealing with. You see, they wouldn’t let me take my gun.
How dare they? I was 5 already … and what’s more I was Davy Crockett. (Yes, that’s me in the picture, looking fine in my coonskin, don’t you think?) You think Davy Crockett would go to school without his gun?
My mother grabbed my arm and hauled me, wriggling, crying, howling, all the way from home to the school gate. But not a step further. No way was I going in. I’d decided that if the school had no place for Davy Crockett, then the school was no place for me.
For two whole days I held out, until finally, I called my protest off. I’d taught them a lesson, all right.
You think kids can be obstinate? Just wait till you meet up with dementia.
Recap – The Bine
I’ve been describing The Bine, my shiny new scheme to transform dementia care. The centrepiece of the plan is to open Bine centres all over the country – places where people living at home with dementia go to spend the working day. If you’ve been following along, you’ll have heard me arguing all the benefits.
- People with dementia get back into a community. Their lives begin to fill back up with meaningful activities. They’re safe but not cooped up.
- Their family carers get time for themselves, able to take up their old interests and careers.
- Because carers are released from their care responsibilities during the working day, many more people with dementia can stay at home instead of being moved into full-time care.
- Instead of paying for care, carers will volunteer their time – for two days a week.
- As a result of these measures, the country solves its funding and staffing crisis for adult social care.
Maybe you’ve bought all that. All perfectly logical, you agree. Great plan.
And then I tell you that I’d like you to enrol at your nearest Bine Centre.
– Who, me? You think I’m crazy or something? I don’t need a place like that.
That’s exactly how a lot of our dementia patients – and their carers – are going to react. We would have too, Lena and I, when Lena was first diagnosed.
I’d come pretty well prepared. We’d seen the GP, gone through the hospital tests, and today we were due to meet up with the consultant. It wasn’t going to be good news. Maybe it would even be a relief, to know with certainty at last. But when that dreaded word finally came – Alzheimers – it felt … like Lena was getting a life sentence for a crime she hadn’t committed. Or a not-life sentence.
Once the verdict had been delivered, our consultant moved quickly on to the formalities. First things first, legal and financial – get a lasting power of attorney arranged, make sure everything was in my name. Then dementia research – would Lena like to get involved with one of the programmes? Then medication. Then we were out of the consultant’s office and whooshed into another tiny room where a social worker introduced herself and bombarded us with leaflets. Advice groups, carers groups, activity groups, so much help, so much support. All this in half an hour – Next, please! – with a follow-up meeting in a week.
And you know what I felt about it all? This is no place for us. We don’t belong here. This is not how it was supposed to work out. Alzheimers – that’s an old persons’ disease. When did we suddenly get old? We don’t need tea and sympathy. I don’t need help. I’m gonna fight this and help Lena to beat it. I’m Davy Crockett.
I never read the leaflets.
Who’s afraid of dementia groups?
Denial. It’s dementia’s partner in crime. To this day, 5 years on, Lena still denies that anything is wrong with her. Or she would, if she could get the words out straight.
I’ve told you our story. It’s personal. But apparently it’s not just us who obstinately resisted help. We live in Salford, a progressive, dementia-friendly place with a pioneering Institute of Dementia, businesses flocking to join the Dementia Action Alliance, people eager to be trained as Dementia Champions and Friends, and around a dozen activity groups for people living with dementia at home. There are reportedly 700 new dementia diagnoses in the city every year and, according to my sources, around 1500 people living with dementia at home … not in residential care. And yet only around 50 people with dementia (usually together with a family carer) regularly meet up for the activities. You see the same faces at most of them. So what about everyone else?
My guess is that at diagnosis many patients and carers, like us, didn’t want to be associated with the old sick people. Wrong tribe. So they told themselves they could cope. And then they couldn’t cope so well … and that made them feel older and sicker. And then they fell off the radar. Alone. Living in the community, that’s what they call it. But many are actually cut off from the community – almost invisible.
They have needs and wants, lots of them, urgent and pressing. They want companionship, to be back amongst friends. They want a sense of purpose back. They need relief, variety. Our Bine Centres could give them everything they long for. But there’s one overwhelming Don’t-Want that, for lots of us affected by dementia, will take precedence over all others. ‘I don’t want to be old. Don’t take me to a place where I don’t belong.’
We’ve clearly got some persuading to do. We need to show those affected by dementia – patients and carers – that The Bine is a place where they’ll feel rejuvenated and where they really do belong. Or we’ll be opening and nobody will come.
How do we do this? That’s what I’ll be discussing this week. And I’ll be announcing our first Bine project – 24 Days To Transform Care.
Davy Crockett won’t need a gun for this project, but he is going to need a few helpers. You might be one of them.
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