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Jet lag every day

Fatigue, tiredness, weariness, bloody exhaustion – yes, it’s all part of Ms Alzheimer’s merry-go-round. And, with her usual lack of discrimination, she gets the whole household, not just her target victim.

My Loved One is perpetually, permanently, constantly tired. That is, I presume, a symptom of the mixed dementias which seem to be felling him alongside good (bad) old Alzheimer’s. The fatigue is supposed to be at least partly related to his low Vitamin B12 levels for which he has 12-weekly top-up injections but I can’t say I’ve noticed them making much difference. So we have to live with it.

The effort of getting up, dressing and eating breakfast usually tires him so much that he (usually accompanied by our delighted feline monster who adores sleepy, sedentary people) sits on the sofa to look at the newspaper but nods off within a few minutes. Sometimes he’s so tired he will wander upstairs and lie on the bed for a daytime snooze, especially in the afternoons. From choice if nothing else is happening he likes to head for bed by about 9pm. He’s also developing a habit of narcoleptic disappearance whatever he happens to be doing – I’ve seen his sleepy head almost drop into his dinner plate, for instance, and he rarely stays fully awake in a theatre or concert hall. The only place he doesn’t fall asleep is in the car. Perhaps that’s a comment on my driving.

The tiredness is also related to broken nights. MLO wakes up frequently needing to go to the bathroom. This was so for some years before the Alzheimer’s diagnosis actually,  but back then he used to manage it solo and quietly. Today it’s much more often – sometimes every 20 minutes or so in the early part of the night and he needs help to avoid – ahem – “accidents” so I’m in and out of bed all night too.

Yes, before you ask the obvious question (and I’m beyond delicacy) we’ve got all the protectors etc to deal with leakage. I loathe the implications of the word “nappy” but there it is.  MLO, however, is a sensitive grown up and if he feels a call of nature he, understandably, wants to heed it – in the bathroom. Dignity and all that. So there’s a lot of laborious lumbering out of bed with me propelling him from behind by the shoulders because he’s often forgotten where the bathroom actually is.

It’s odd too. This whole bathroom business brings out the worst in him. In general MLO is compliant and sweet natured (more so than in the past when he was well, for the record) and usually takes my bossy instructions about every aspect of life on the chin without making a fuss. He’s grateful, I suppose, at some level, that I tell him what’s going on and what he has to do because he often hasn’t got a clue. The only time he really snaps at me is when I say, perhaps, at 1.30am. “No, you don’t need to get out of bed. You really don’t. You went ten minutes ago. Trust me. You really did”. I never win. And out we trudge in tandem. Again.

So broken nights simply have to be contended with. And it means, obviously, that I’m nearly as tired as he is. It is months now since I got more than two hours’ sleep at a stretch (other than went on a music course for three blissful nights last month) and often I have to be content with much shorter serial mini-sleeps but I can’t rest during the day to compensate because I have work – domestic and professional – which has to be done and commitments in my diary. Onwards and upwards is what it has to be. You do, as every new parent knows, gradually adjust and adapt to sleeping in short bursts. You become an accomplished opportunist sleeper but that doesn’t mean you don’t feel tired. In fact it’s like permanent jet lag.

Even a healthy body like mine will try to claw back sleep deficit too. I rarely complete the 25 min train journey into central London without “losing myself” for example and I often find I can’t read more than a page or to of a book before I’m gone. It’s like a plug falling out.

There have, moreover, been a couple of occasions in recent months when I have sensibly, but very crossly, cancelled jobs involving  longish drives  because I have slept so little the previous night that  I’m terrified of nodding off at the wheel. That’s the tiresome Ms A compromising my work opportunities again. She really is pernicious.

It is often said that people with dementia become increasingly like babies. It’s a lousy analogy. There’s something wonderfully, powerfully, hopeful in a new baby so that, in the scheme of things, you don’t really mind that much how many times he or she demands attention in the night. You know it won’t be for ever. Infant and parent have a future to strive for.  It’s a completely different kettle of fish when, fuzzy with tiredness, you know that this is a reverse journey.



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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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