A third presence has arrived in my marriage. Until recently it was him and me. But the man I married in 1969 and I are no longer a self contained, private unit. Ms Alzheimer’s – I think of her as a hideous, be-fanged brain-eating monster – has come to live with us. Permanently. Symptom-slowing drugs might just keep her in the hall rather than the sitting room for a bit but even that’s not guaranteed.
The shock of learning that the person whose personality, mind (and body) I fell in love with over half a century ago is now steadily, inexorably and relentlessly going to fade away before my eyes, is a life changer like no other. Death of parents was hard to bear but it came nowhere near the horror of this.
Not that we’re unusual (as if that makes it any easier). My Loved One is 71. According to Alzheimer’s Research UK one person in 14 over the age of 65 has dementia. And let me share something I’ve only recently come to understand. The word “dementia” literally, from the Latin, means out of mind. It refers to a generic set of symptoms, like fever. A number of diseases cause it. Alzheimer’s is by far the commonest. Two thirds of dementia sufferers have Alzheimer’s – that’s about 600,000 in Britain at present. Numbers are rising all the time as the population ages.
As our consultant informed us while we sat numbly trying to absorb the enormity of our situation at her clinic last month, Alzheimer’s is set to become the biggest killer in the next 20 years or so, outstripping, for example, cancer. “There is no cure” she said. So did the case worker who originally conducted an assessment at home several months ago., So does every website you look at. No one beats about the bush. Ms A is here to stay. She has to be lived with. Eviction is not an option.
Neither is driving. The hardest thing at this stage is that MLO has had to surrender his driving licence. Once the consultant saw the spatial awareness section of the cognition test MLO did (again) there was no choice. She was very gentle (but firm) about it, observing that such conversations are the hardest part of her job.
Devastating as it was to have Ms A finally, unequivocally named her arrival has been gradual. Hindsight is a wonderful thing. There was disorientation during a holiday in Chicago (“Where’s our hotel?” repeatedly) in 2012. Last month MLO got lost in a shopping mall in Kuala Lumpur and had to be restored to me by the police. He is unsteady on his feet, ponderous, struggles with simple clerical tasks and has lost weight. And as for his memory …
Well, we’ve all seen films such as Iris, Still Alice and Away From Her not to mention reading powerful novels like Emma Healey’s Elizabeth is Missing and Sally Hepworth’s The Things We Keep. It’s mainstream stuff. Over 38 per cent of the UK population knows a family member or close friend with Alzheimer’s. There are no secrets about where Ms A will eventually lead MLO – further and further away from the rest of us. The only unknown is how long it will take her.
So, while the consultant carefully advises us to set up lasting power of attorney as soon as possible – a practical but sinister issue with nasty connotations – we need to focus on the immediate future.
“Take him wherever he wants to go – now – while he can” says our elder son. “And let him have what he wants to eat – decades of ‘sensible’ abstemiousness don’t seem to have done him much good!” says the younger.
So grinning through the tears I lay in vast quantities of chocolate biscuits. And fruit cake. Blow the sugar. If he likes it, he shall have it. (As long as he also eats the usual bucket load of daily fruit and vegetables – old habits haven’t gone altogether).
Asked if there’s anywhere left that he’d like to go or anything he’d like to do – and we’ve already been fortunate enough to travel widely on some fabulous holidays over the years – MLO thinks hard. Yes, he’d like to hear the Vienna Philharmonic Orchestra on their home turf in the Musikverien in Vienna and, similarly, the Royal Concertgbouw Orchestra in Amsterdam. I’ve booked the latter for June and am working on the former for November. Susan-will-fix-it.
And at least it’s peaceful now. I was angry with everyone and everything for months before Diagnosis Day. I suppose at some level my unconscious brain was trying to tell me that the whole thing was a wind up and that MLO was putting it all on to annoy me. A counsellor would no doubt call it “denial”. Now I have recognised the disease for what it is. And I’ve looked the hideous Ms A square in the face. I’m adjusting and I’m much better tempered – despite the all consuming sadness and fear.
Meanwhile, like thousands of other families who have to share their lives with the hateful, pernicious, Ms A, we now, somehow, have to stop fretting about the future and live life to the full in the present. Carpe diem, every day as it comes and all that.