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The things people say

I adapted surprisingly quickly to saying firmly “My husband has Alzheimer’s” to anyone who needs to know – and that’s most people we come into contact with. It’s taken me much longer to get used to the predictable – actually quite funny in a rueful kind of way – reactions I get, particularly if My Loved One is not there.

To be clear and fair: everyone I’ve had such a conversation with has been kind and sympathetic. People are extraordinarily decent and I’m often deeply touched by just how caring almost everybody is, ranging from close friends and family to casual acquaintances.

It’s just the way many of them go about expressing their solidarity which makes me giggle. They mean so well and they have no idea that they are conforming to a well worn pattern. First they look me in the eye, squeeze my arm or hand and murmur something warm and heartfelt about how sorry they are. Then, after a pause they say: “And I know what it’s like. My granny/uncle/mother/ grandfather/aunt/father (substitute as appropriate) had Alzheimer’s”.

“Yes, it’s in every family. Just the shit life throws at you” is my stock response as I try to keep it light. But I know what’s coming. My comment triggers an enthusiastic nod before the person I’m talking to launches headlong into a lengthy, often very detailed, account of just how ghastly it all was.

I then spend ten minutes or so hearing how Mum (or whoever) lived to be 102, not recognising anyone in her family for several years before she died. She became, moreover, hideously and uncharacteristically aggressive and had to go into a nursing home for her own protection and that of other people. Meanwhile she was also doubly incontinent for ten years … and so on and on.

I have heard dozens of these sad and appalling stories since we went public about our predicament and I started these blogs. I made that particular one up – it’s a composite but you get the gist.

Well, I suppose it’s beneficial for people to get such sadness off their chests even if it all happened a while ago. If, however, they think it helps me to hear about it then it doesn’t. It’s a bit like telling a young woman pregnant for the first time graphic scare stories about childbirth. You just don’t do it. (I hope).  I have schooled myself simply to rise above it when someone tells me an Alzheimer’s horror story. I just chuckle inwardly, look seriously at the speaker and think: “Here comes another one”. I find it funny because, obviously, not a single one of these lovely folk realises how stereotypically he or she is behaving.

The only way I can “manage” (sounds like running a corporation) what I have to deal with is by taking every day as it comes and refusing to think (much) about the future. I’m not in denial. Of course I know that once Ms Alzheimer’s has her fangs in you it’s a downward trajectory. There will be better days and bad days but the general trend is gradual deterioration. What good would it do me, MLO or anyone else to be getting stressed and worried because this time next year he might not be able to do some of the things he can do now – such as remain in the house alone for a few hours and prepare himself a simple meal which is what he is doing  as I draft this blog on my laptop in a coffee shop 50 miles from base?

I’m thankful too that MLO has never been a very imaginative man. It used to irritate me a bit but now it’s a bonus. I honestly don’t think he can visualise what might lie ahead and nobody, thank goodness, is regaling HIM with their graphic Alzheimer’s anecdotes. He’s vaguely frightened about the future but his fairly prosaic brain – not the bit that Ms Alzheimer’s is occupying – doesn’t seem to be filling in the details. Naturally he is anxious about the forthcoming surgery for the skin cancer on his face in a couple of weeks but I don’t get any sense of his dwelling on the rest of it much which can only be a good thing. The people he meets are gentle and tactful with him as well as admirably unpatronising – and I find that quite moving. Full marks, for instance, to the Lewisham Borough Council  Occupational Therapist who did his recent blue badge assessment and to the woman at HSBC who processed our activation of Lasting Power of Attorney last week.

But I don’t suppose anyone will stop bombarding me with the awful stories they dish up for me when MLO is absent. Good job I still have a healthy sense of humour really. As ever my glass is half full.

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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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