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The truth

I am heartily sick of seeing attractive photographs of beaming, jolly people with Alzheimer’s. You know the sort of thing. The Alzheimer’s Society and comparable charities pump them out on social networks every day along with upbeat stories about astonishing people who’ve just climbed Everest (or something) for charity five years after diagnosis.

Yes, I know that when a disease is incurable and inexorable the only thing these organisations can do to support the newly diagnosed is to try to be positive. “Let’s all look on the bright side” might have been written for them. The ghastly truth, when you actually live with it 24/7, is so frightful that it would scare the pants off most people if it were spelled out.

Well, I’m sorry (but not very). I don’t do denial and lies.  My Loved One – now I think technically at the “moderate to severe stage” –  is doubly incontinent. I’ve hinted at this before but truth will out and there it is in black and white. I have to hose him down night and morning and often several times in between. I never had any sort of nursing vocation, I reflect, as I wipe dollops of excrement from the bathroom floor,  soap more of same off his legs and dispose of filthy pairs of throwaway padded pants. Sometimes I can hardly believe I’m doing it.  At present our black bin is emptied fortnightly and with everything tightly wrapped that’s just about OK. If they try, as some boroughs are threatening, to reduce it to three weekly or monthly it most definitely won’t be. Nothing about such matters in those upbeat photographs, I notice.

MLO is, incidentally, now quite beyond managing any of this for himself. He can just about clean his teeth if I put the paste on the brush and lead him to the basin although he makes a horrid sticky mess of it. He also still shaves. Again, I run the warm water, take him there, line up the four items (brush, soap, razor and after-shave) he needs and leave him to get on with it. It takes 40 minutes or so. I doubt that he’ll be able to do it for much longer. Then what? Grow a beard? I don’t think I’d be much cop as a barber.

He finds sitting down on any sort of chair very difficult to co-ordinate – simply getting his bottom above the seat and bending his knees to lower himself is a major operation. When we’re out – from medical appointment to theatre to sitting on a bench in the park – other people usually help. So kind, as I’ve often said. At home if it’s a meal he’s sitting to, he then can’t manage the cutlery so I cut it up for him and give him a spoon. He eats very messily these days however easy I try to make it for him. He’s much less prepossessing in many ways than any published Alzheimer’s charity ad.

He is extremely wobbly on his legs and often gets “the shakes”. Regular readers will recall the recent severed ear in Brighton when he fell. Since then he has fallen in our bathroom and again on Spring Bank Holiday Monday earlier this week in our garden. The latter meant the whole afternoon at a local emergency care centre because he dislocated and fractured his left hand ring finger. We’re now “under” the fracture clinic and the Falls Service (as well the Memory Service, Speech Therapy, Podiatrist, GP Practice and more) of which more, maybe, in due course.

And as for all those smiling faces – often euphoric as they look at photograph albums for example – in the pictures, the new MLO now has a blank expressionless gaze. There’s a rather old-fashioned un-PC expression about someone “not being all there”. Absolutely accurate. He definitely isn’t there much (most) of the time.

Then there’s the usual Alzheimer’s memory/cognition stuff which is worse every day. He remembers almost nothing. I can say “We’re going out  this afternoon” ten times in a morning and he’s still surprised when I tell him it’s time to go. I ask him if he wants a slice of cake and he says yes. By the time I get back to the table with it, he’s shambled off and, when I remonstrate says “ I didn’t know I was having cake.” And the non-sequiturs are continual. Inclined to follow me about anyway, he was today lurking behind the front door when I came in from watering the hanging basket by the porch. “Oh do go and sit down” I said in irritation. “It was for toast” he muttered.

Oh yes, the muttering. He now speaks mostly in a very low voice in between bouts of coughing. Both these, apparently, are the result of a failing swallowing reflex. Then there are frequent bouts of Jabberwocky- style nonsense words. Great stuff, this disease is it not?

I could go on but you’ve probably got the gist. A spade is most definitely a spade if I’m in charge of it.  MLO is now a leaky, seeping, accident-prone body with whom you can no longer have any sort of conversation and he’s often very irritable – not a wholesome,  cheerful old gent who has just forgotten a few things,  smiling happily out from a charity photograph

The stark, stock image with this blog shows life with Alzheimer’s as it really is. All rose coloured spectacles should go in the bin.

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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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