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What if? (Part one)

Imagine this. There’s something wrong, but it’s not clear what that is. You miss things, lose things, forget. You used to be organised, but everything seems muddled now.

You talk about it to friends, to your family, the people you love. They say they forget too, nothing to worry about, it’s only your age. There’s a mutual conspiracy to push the fear away. You laugh together. They look after you. But sometimes they might criticise, or feel irritated or put you down. You might repeat yourself, and that might annoy people.

Annoying people isn’t a surprise. You put yourself down all the time now. You’re trying, really hard. You know you’re not stupid, but you feel stupid, or whatever names you call yourself. You begin to feel low, to feel bad and sad. It’s hard to follow conversations, to be in groups. You begin to withdraw. You think it’s your fault. You’re ashamed, embarrassed.

Nobody suggests this could be dementia, because we’re all too scared of dementia. Dementia could be the dirtiest word after death. You might know people who have dementia, and you’re scared for them too. Or they might have died.

By the time someone takes you to the doctor’s, dementia’s been around for a long time, and your sense of yourself has hit rock bottom. The doctor also wants to reassure, to wait, to avoid the word. That doesn’t work. It could be a year, two years, more, before the issue gets addressed. Or there could be an accident, a crisis.

And by that time dementia might be doing its work – it might be too late to use the medications and adapt to a different life. It might be too late to be compassionate to yourself, to simplify and slow down. Everyone might just be scared, or full of pity, and everyone might feel helpless.

So it’s not only the dementia. It’s the anxiety, the fear, the isolation, the self-judgement. It’s the difficulties with the people you love, and their reactions to you. Because none of you know why you're forgetting. And by then, you’re expecting to get things wrong. Strange things are happening to your senses, and that’s even more frightening. You don’t want to speak in case it comes out wrong.

No blame. We’re all doing our best. But could it be better?


I hope this wasn't difficult to read. Could you imagine it? Has it happened to you, or someone you care about?

I hope it can be better. This story isn't about me, but it could have been. And I don't know what's going to happen to me - but when do we ever know? Over the next while I'll write some more about how I think it might be better. But maybe you have something to say, your experience or fears? Leave a comment if you'd like to.

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