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Downhill from diagnosis

When you get an Alzheimer’s diagnosis the medics quickly and brightly tell you that it’s an unpredictable disease and that some people stay in much same place without getting worse for 20 years. It’s called trying to put a valiantly cheerful spin on a hideously unpalatable situation.

Well of course I Googled it.  Within hours of My Loved One being diagnosed on 29 April, 2017 – just 21 months ago – I knew that the average time an Alzheimer’s patient survives after diagnosis is four to eight years.

And averages, as every sensible person knows, can be very misleading. For everyone who falls within the parameters of the given average there are others at both ends. That’s how averages work.

MLO, sadly, is declining far faster than that average suggests. We haven’t even reached the second anniversary of the diagnosis and there are things he can’t cope with now which would have been OK just a few weeks or months ago.

Did I really, for example, take him to Washington DC as recently as September 2018? Well, thank goodness I did because it would be unthinkable now. I have no idea how I’d manage his incontinence on a 7/8 hour flight and he’d find the travel unbearably tiring. He’d also have very little idea of where we were and why and I certainly don’t think that it would now be safe to leave him resting in a hotel room while I pottered off on my own as I did several times last autumn.

Until last summer he would walk, alone with one of those four wheeled shopping trolleys, a mile to Sainsburys each Sunday morning to get the fruit and vegetables which I preferred not to have delivered. Now he goes out only if there’s someone (usually me) with him.

We could still share a joke, even a feeble one, until recently but that now seems to have gone too. Earlier this week I was on all fours on the floor in front of him putting on his socks. “There!” I said, brightly. “I’m kneeling at your feet just as you’ve always wanted.” He just looked at me with that awful blank stare – increasingly his default expression.

For some reason I don’t understand at all he can no longer make table cutlery do as he wants it to either. Everything falls off it. Ms Alzheimer’s attacking the connections in the brain which control co-ordination? I’ve suggested he use a spoon and fork instead of a knife and I’ve bought an easy grip set but it makes little difference. I now routinely cut his food up for him – even the Fiorentina pizza he’s so fond of in Pizza Express causes big problems although I always ask for a pizza wheel and a spoon.

Oh and that’s another thing. I do all the talking, ordering, bill paying and so on in restaurants (usually pre-show although he comes out with me less and less often) because he and I both know he’ll get lost in his sentence long before he can get out what he’s trying to say. It seems to be a mixture of memory loss and articulation failure.

Not that he has any day-to-day money any more. And I manage his bank accounts through Power of Attorney. It’s one of the many things I have to tell him he’s “retired from.” And I’m grateful to our elder son for nailing that kind way of putting it. ES was with us the other day when MLO started fretting about keys and locks. I told him not to worry because he doesn’t really do keys anymore. “You’ve retired from keys” chipped in ES with a cheerful twinkle,  managing as he usually does, to keep things light and good humoured. In fact MLO has “retired from” most things in the last few months.

The one-mile-per-hour trudging gait has worsened noticeably too. So has the painfully slow speed at which MLO does any tiny task. He makes the slow loris look like a boy racer. A ten minute struggle to get himself into a pair of pull-on jogging trousers before eventually giving up and asking me to help him is the new norm. He still shaves himself (thank heaven) when directed to by me. It takes around 40 minutes. Then there’s all the help he needs with what the professionals tactfully call “personal hygiene” (a nightly bath and a morning shower in this case). And so it goes on. 24/7.

Presumably – gloomy thought alert – in a few weeks’ time I shall be reflecting how easy things were back in early February compared with how they are in the future/ present time of writing whenever that might be. It’s all relative.

By the time you read this we shall be in a holiday let cottage in Dorset with my sister and her husband. She and I are hoping that MLO and my very elderly but reasonably “with it” brother-in-law will be able to look out for each other while we escape for walks in Hardy country. There’s another family member joining us who might help too.

I’m not holding my breath about any of this though because I suspect that MLO will find being in a strange house very disorientating – although it was more or less all right when we did this on our own in Northumberland nine months ago. That’s relentless deterioration for you.

More on the Dorset adventure next week.

Washington DC, Autumn 2018

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Susan Elkin
Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
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