It’s hard to tell people about dementia, especially if you’re relatively young, physically active, perhaps still working. Who should you tell? When? How will they react? Will you lose friends … or your job? You don’t feel old – but the world thinks of dementia as an old person’s illness.
If, like me, you have a partner who’s been diagnosed, it’s maybe even harder. How will they feel if you start telling others about it? And yet carrying the secret alone is such a burden. You long to share it.
There’s no simple answer. Everyone needs to find their own way. But here’s how it was for us.
(Originally posted in April 2015)
She’s got lots of friends. Not too many in this country, because we spent all those years living abroad, and when we came back here … well, let’s just say it wasn’t so easy for her.
But she really has got lots of friends – on Facebook. Of course, she doesn’t use Facebook these days, not since …
Whenever I post a picture of her on my account, her friends are all still there for her, adding comments, hoping she’s well, saying it’s a long time since they heard from her. It’s funny how no-one’s come out and asked me the question directly … but they probably all know. After all, we’ve had one or two of them over to visit, and I had a few whispered words about it in the kitchen, so when they went back, they’ll have talked about it. Word gets around.
I’ve been thinking for a while that I should say something – make an official announcement of some kind. But how could I, without betraying her? In her own mind, she’s absolutely fine, everything’s normal. She gets mad when I even mention the word. She’d be mortified if I told the world she had … Alzheimers.
That’s how it’s been with us, Lena and me, for the last couple of years since the diagnosis. But as the days and months pass, the urge to say something has grown. Lena’s always loved her friends – she’s the most social person I’ve ever known. But now she’s cut off from them. She can’t communicate with them – not in writing anyway – and they don’t know what to say, so they’re not saying much. I understand that. Nobody likes embarrassing people.
But Alzheimer’s walks hand in hand with loneliness and isolation. We may not be able to beat the illness, but at least we can give its shady partners a good fight. So it’s time to speak out. To come out.
The opportunity came a couple of weeks ago. There was an event at the Manchester Museum – Trials Of The Mind – exploring attitudes to mental health research. I’d been asked to give a 15-minute talk explaining how we’d benefited from participation in a research programme investigating the effects of moderate exercise on dementia. I’d decided that this was the perfect occasion to make the first public announcement of Ctrl+Alz+Shift, my new website to promote activity for people with dementia.
I wanted Lena at the event. Partly selfishly: after all, she’s the poster girl for my website campaign (as I’ve been telling her repeatedly, in a cunning attempt to associate Alzheimers with positivity). But even more, because it was a great opportunity to break out of the everyday routine, to meet new people, to get social. It promised to be her kind of occasion.
On the way there, Lena was nervous.
– Will they ask me questions?
She hates questions. She thinks they’re all trying to catch her out, and make her give the wrong answer. It’s the same fear every time we see the doctor too.
– No, you’re just going to be in the audience watching.
– So what are we going to watch?
– Well, there’s a play, I think, and then some discussion groups …
– So are they going to ask me questions?
But by the time we’d finished our second breakfast of the morning – the treat of a coffee and a pastry in the Museum coffee shop – the world seemed a better place, and Lena was unquestioningly ready.
It started well. The play – Sasha’s Trial – was outstanding. How would Lena respond to the portrayal of Grandad as a person with Alzheimers? No problem. It was just a play, an entertainment. And after all, Alzheimers is nothing to do with her, is it?
But then we almost came to grief in the first group discussion period. As luck would have it, we were sitting next to one of the very few people in the room who wasn’t either a health professional or a carer. We were introducing ourselves to the group, and in tippy-toeing around my involvement with mental health, I mentioned that Lena and I had been on a dementia research programme. Our non-carer swung round to Lena and landed a potential knock-out blow.
– So have you got dementia then?
She was rigid in her chair, furious.
It was a terrific counter-punch, an answer so unexpected that he was left with his mouth open … giving me the chance to turn the conversation in another direction …
But Lena hadn’t forgotten. She hissed in my ear.
– I want to go home.
I held her hand.
– Do you? Really? Don’t you want to see the rest of the play?
– Why did he say that?
– I don’t know. But your answer was brilliant. Look, it’s coffee-time soon. Shall we see how you feel then?
Had I made a mistake, bringing her? Perhaps I should make my excuses and we should leave. It probably wouldn’t matter too much. My presentation was only for 15 minutes right at the end of the day. They’d understand.
But we didn’t even need to wait for the coffee-break. Because by then, social Lena was back, smiling, at ease. If Alzheimer’s has one benefit, it’s the power it gives to forget bad memories as well as good ones. No, not just forget – eradicate!
So the time had come for my spot. Deep breath. This was it. A public Outing.
– Hello, I’m Alan Miles. And just over there in front of me is Lena. I used to be known as Lena’s husband. These days a lot of people seem to call me Lena’s carer. But I prefer to think of myself as Lena’s partner. We’re fighting Alzheimer’s together.
I caught her eye. She liked it. So did the audience.
Now it was over, and almost 100 people in the room knew our story. It was finally out there. And leading the applause, just as she always used to, there was Lena. Did she understand the importance of what I’d just been saying, what I’d told them about her? Maybe not. I sense that quite often these days, she understands the words, but can’t really connect all the meanings together. But it didn’t matter. She was happy. And that made me happy.
A few people came up to chat with me afterwards. And while I was busy with them, out of the corner of my eye I could see a group gathering around Lena – including her inquisitor from earlier. But now she was in her element – laughing, talking – just like she’d never been away.
We were at the bus-stop, going home.
– Did you enjoy that?
– Yes. I really liked all the people. They were all really … normal.
– What about the guy who upset you this morning?
– Upset me? I wasn’t upset. What are you talking about?
– Never mind.
– No, I thought it was good. Didn’t you say you were going to speak?
- My Ctrl+Alz+Shift site evolved into this one, The Care Combine.
- Sasha’s Trial is now a moving film – a resource to improve public understanding of clinical research on dementia and mental illness, and to encourage people to take part in health studies. Follow this link for details of how it can be used – and to watch the whole 32-minute film.
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