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.

John Steinbeck’s heart-wrenching novella Of Mice and Men (1937) must, in recent years, have become one of the most widely read stories in English. For decades it was a GCSE set text. I taught it to dozens of classes. That means millions of teenagers (and often their families) will have read it. There have also been some pretty impressive film and stage adaptations.

So we all remember how George and Lennie are migrant farm workers in 1930s California. Lennie has what would now carefully be called “learning difficulties”. George, often exasperated but  gruffly loving, is Lennie’s self appointed carer. The relationship is fraternal, complex and based on mutual dependence.

We’ll I’ve thought a lot about Of Mice and Men lately because I often feel I’m living it (without the Californian sunshine, unfortunately). Lennie’s problems – not understanding, willing to please and forever doing things he regrets because he doesn’t want to upset George – are very similar to the dementia which characterises worsening Alzheimer’s.

Lennie, unlike My Loved One, is on the one hand physically very powerful and on the other has a child-like love of stroking soft things. It is this combination which repeatedly leads him into serious trouble whereupon,childishly, he says often to George. “I’ve done a bad thing.”

MLO’s hideously similar new line is “I’ve done something silly” and when he says this my heart, like the fictional George’s, plummets. “OMG, now what?” I think. He’s trying, like a child who knows he’s in the wrong, to be open and honest with this mother figure I’ve reluctantly morphed into. The trouble is, he’s usually so anxious about whatever it is that he can’t explain what he’s done.

Recent “silly things” have included writing a cheque with an extra nought on it so that, for the first time ever, MLO’s cheque bounced. Fortunately it was only made payable to me and it’s all sorted now. His banking habits are stuck in 1962.  But not for much longer: I’m in the process of assuming control of his personal account. Then we shall fast forward to 2018 and it will all be online.

We had a classic “silly thing” instance last week when I was out working. I phoned home between jobs, as is my wont, to check that MLO was OK and to have a chat. It was a warm sunny day and, before leaving the house. I’d installed the umbrella on the patio table and wound it half up – enough to give him a bit of shade if he wanted to sit at the table for a while. He’s never liked strong sunlight and now that he has a large, growing squamous cell carcinoma on his face (due for incision next month) I think it’s sensible to be careful. The reason I hadn’t wound the umbrella any further was because one of my carefully nurtured and rather beautiful hanging baskets was in the way – because we’ve extended the patio and I need to rethink where things go.

Well, I expect you’ve guessed by now what happened. Yes, he tried to put the umbrella up fully and knocked down the hanging basket because he, his brain all twisted up by Ms Alzheimer’s, can no longer work out that if I’ve done something in a particular way then there must have been a good reason for it – best, therefore to leave it alone and not fiddle with it. Or to put that another way he now struggles with cause and effect. And I struggle with trying to imagine how it feels to live inside his confused head.

The conversation on the phone went something like this: Me: “Something silly? What’s happened?” Him: “It’s that pink thing outside” Me (cottoning on) “Do you mean the hanging basket? You didn’t fiddle with the umbrella did you?” Him: “It’s in the middle of the table.” Me: “Did you knock the hanging basket  down?” Him: “I think so” Me: “Is it damaged?” Him (voice beginning to crack) “I’m not sure”.  Me: “Well can’t you hang it up again? Him: “I thought of that but you know that round thing ..?” Me: You mean the hook?” And so on – and on.

In the end I took a deep breath, told myself (for the millionth time) that I have to keep things in proportion and said: “OK. I’ll look at it when I get home. And if you’ve damaged it badly, well It’s only a hanging basket. We’ll buy another one.” By then, the man at the next table in the coffee shop was giving me very sympathetic looks.

In the event, all I had to do was rehang the basket and remove a few trailing bits damaged by the whole thing falling to the ground. It’s a rather worrying indication of how things are and where they’re going that MLO couldn’t work out what was needed.

At the end of Of Mice and Men, George has to shoot Lennie to save him from a much worse fate. I rather hope it doesn’t come to that.

Steinbeck Centre, Salinas, California. I took this photograph in 2013.