‘I couldn’t let Alzheimer’s be our dirty secret’
After the agony of her husband’s diagnosis, a frank approach makes life more bearable, says Susan Elkin
Looking back, I’d been getting angry at my husband for months before the penny dropped. Nicholas had become increasingly bumbling, leaving his bag behind in a restaurant or his toiletries all over the bathroom – unusual behaviour in someone so obsessively orderly that we’d long teased him about having mild OCD. But no real cause for alarm.
Then, I noticed he had begun to struggle to express quite simple ideas. He would constantly ask me: “What’s happening today? Is anyone coming?”
Basic clerical tasks had started to defeat him, a man who used to be a highly competent professional administrator.
Writing a quick letter or filling in a form created very heavy weather,
‘Nobody has told me how to deal with my guilt over the times I was bad-tempered’
while I looked on in impatient incredulity. A cheque he was meant to pay into the bank disappeared – an embarrassment that reduced me to a fury.
He used to run our household as efficiently as Mr Carson does Downton Abbey. But one day I found myself bellowing: “Why have we got five bottles of cream cleaner when no one uses it any more, and no washing-up liquid?” (We now have groceries delivered.)
On a trivial level, such incidents were funny. But I was in denial, pretending (hoping, desperately) that the obvious – that he was in the early stages of dementia – wasn’t really happening.
What brought home the seriousness was the day I found him unable to park the car on our front drive. A keen driver, he had thought nothing of motoring on eight-lane highways across America.
We sought medical help last year, and the man I fell in love with half a century ago was diagnosed with Alzheimer’s disease.
Somehow, we got through the consultation without falling apart. Then we staggered over the road to a coffee shop, literally holding each other up. Once there, I cried and cried – and cried. He seemed numb, fetching tea to comfort me and sounding more concerned about having been ordered to surrender his driving licence.
From the off, I wasn’t going to let Alzheimer’s be his and my dirty secret. Within an hour of getting home from the hospital, I emailed both of our sons and my sister and told them in one blunt sentence. A day or two later, I emailed the wider family in the same vein. For Nicholas, who asked me to do it, this brought relief. It meant people could make allowances for him, and he didn’t have to pretend.
Of course, our sons were upset, but they weren’t surprised. Both had been gently hinting for some time that I ought to be kinder to their father. (True to form, I just snapped back: “You don’t have to live with him…”)
The consultant assured me that “our” sort of Alzheimer’s is not genetic, which came as a relief. And it’s brought the rather marvellous best out in our boys.
Although they live 60 miles away in different directions, and have their own businesses and families to worry about, they visit more frequently than ever.
As a family, we’re probably closer than at any time since they were at primary school.
A year on, I have learned to say “My husband has Alzheimer’s” to colleagues, friends, acquaintances, shop assistants, the window cleaner and anyone else who crosses our path. Almost unbelievably, he too has got into the habit of saying firmly to strangers: “I have Alzheimer’s, so…”
There is no cure for Alzheimer’s, the commonest cause of dementia, as the consultant reminded us on the day of diagnosis. You simply have to manage, take symptom-slowing drugs, go for long walks, do crosswords, eat a Mediterranean diet, socialise as much as possible… and wait for the slow decline. Nobody has yet told me how to deal with my own guilt over the times I caught myself being bad-tempered with him.
We have found it far easier to be upfront than to dissemble. Frankness gives other people permission to be equally straightforward. Most are then heartwarmingly kind and considerate.
A friend’s partner is, evidently, at a similar stage of the illness. Their lives are tougher than ours because the sufferer insists there’s nothing wrong with him, refuses to go for diagnosis and declines all offers of help. It has caused problems between the two of them and within their circle.
Many readers of the blog I started after Nicholas was diagnosed have told me similar stories – and said that the disease is more manageable if you confront it head on.