When My Loved One was finally given his devastating, condemnatory diagnosis 11 months ago, I had great difficulty holding on for the rest of the consultation. Kind and helpful though the doctor was, the dreadful words “My husband has Alzheimer’s” kept rattling round my head and my face wouldn’t behave itself. It was only my trusty old friend “Professional Mode” which kept me speaking articulately for a further 20 minutes or so although I’ve no idea what I said.
When we eventually got out of that room we staggered over the road, literally holding each other up, to a coffee shop where I let go. I cried and cried and cried – which probably didn’t help MLO very much. He, after all, had just been struck with a metaphorical sledgehammer and told that he must surrender his driving licence immediately. In that first hour I think he was in such shock that he didn’t really take in the whole truth and it was a case of his comforting me rather than the other way round.
Well, somehow we got numbly through the rest of that day. I had the presence of mind to inform close family: our sons, my sister and my dearest friend, who’s effectively another sister. All four of them came back immediately with supportive warmth – which, as I’ve said before, is immeasurably sustaining.
Then the next day my habitual practicality began to surface and I found myself thinking: “OK. Ms Alzheimer’s is here to stay. Crying isn’t going to get rid of her so just how are we going to deal with this monster?” My automatic instinct, as a writer, was to get it into words. But of course you can’t write about someone else’s illness – even someone who’s been as close to you as MLO has to me for half a century – without his permission.
“How would you feel about me writing a piece – and then maybe following it up with subsequent pieces – about all this?” I asked him tentatively. He’s always been a pretty private person and I expected him to say no unequivocally. To my astonishment he said. “Ok, why not? You’ll do it very well and perhaps it will help other people. Can I read them as you post them?”
So that’s how these blogs began. Starting on 8 June last year and posting weekly since there are now 35 or so in the archive and a body of about 30,000 words and counting. Perhaps eventually there’ll be a book in this. I know my little offerings really have helped others because several people, in a similar position to us, have told me so and thanked me. The writing has also cemented friendships and, in some cases, created friendships out of former acquaintanceships. Moreover – for reasons I struggle to analyse but it’s a well documented phenomenon – it helps me to cope. Writing it all down as it really is, is oddly cathartic. I suppose it gives me some sense of being in control. I can’t evict Ms Alzheimer’s but I can write.
There’s more to “going public” than blogging, of course. It’s a whole attitude of mind. Neither of us dissembles with anyone, ever. MLO has learned to say to people when he’s in difficulties: “Can you help me please? I have Alzheimer’s and I can’t find my way back to where my wife is” (That actually happened last week at the Coliseum where we saw Iolanthe. I shouldn’t have let him go off to the loo alone in an unfamiliar building). Then, inevitably, once the words are said, people are wonderfully helpful.
“Please could my husband have that seat? He has Alzheimer’s and he’s shaky on his feet”, I say to people casually on the Tube. And I order for both of us in restaurants so that waiting staff can see what the problem is – he usually forgets what he’s decided to order by the time he has to say it aloud.
“Sorry, that’s how I am now” he will say to anyone we spend any time with when he loses his way in a sentence.” And he’s learned to be matter-of-fact about the things he can’t do anymore such as the paperwork relating to my business. “I used to be an administrator but now I can’t work out what I have to do” I’ve heard him say several times to people who don’t know him very well. And he’s got used to the oddness of meeting strangers who know quite a lot about him because they’ve read the blogs.
Denial really doesn’t help Ms A’s victim or anyone else. “I think we’ve made a really sensible decision to be open about my problems” MLO remarked the other day, apropos of nothing in particular, in a rare, bright and positive moment. “Once people know, and realise that it’s OK to talk about it, they can react honestly without having to pretend that they haven’t noticed how I am. It’s so much easier for everybody”.
Meanwhile, I’m amused to note, that for a man who’s always tended to introversion, he seems actually to enjoy being the centre of attention. “Have you written anything about me this week?” he’ll ask, childlike and hopeful. And of course when we’re out everyone we meet (and I know hundreds of people in the performing arts world) makes a point of asking him how he is and allowing him to answer with dignity. And that would have been much harder if we hadn’t been truthful.
Everyone in our (unenviable) position has to find his/her own way of dealing with it. We’ve come a long way in eleven months.
