I’m truthful by nature. I can’t help telling it how it is. And I suspect these days that other people sometimes find my unrestrained honesty a bit disconcerting. “How are things?” they ask kindly. Then when I reply bluntly that it’s pretty awful, often difficult and getting worse every day they look uneasy because where does the conversation go from there? Sorry, folks.
Many people with Alzheimer’s – or caring for someone with it – go into denial. I hear all the time, often from those same well meaning enquirers, about grannies, uncles, parents et al who simply refuse, or refused when they were alive, to acknowledge the truth of what is/was happening to them. Well yes, I can understand that very well. If you ignore something determinedly enough you can, in a sense, convince yourself that it’s not real. Perhaps that’s easier. But I’m cursed, not only with Ms Alzheimer’s in my home, marriage and life, but also with a lifelong attachment to facing facts head on.
When I was eleven and in my first term at a pettily rule-bound, old fashioned grammar school I made a mistake with signing in on the dinner list so that the class numbers didn’t add up. Not going into lunch and getting a tick was regarded as a heinous sin. When our form teacher told the form, very seriously, about this appalling crime the next day as a warning to the perpetrator I immediately leapt to my feet and said “Oh Mrs Grant, it’s all right. That was me. I’m really sorry. I made a mistake. I had to go into the other sitting because of my violin lesson”. Problem solved. Now, I don’t actually remember this incident but decades later at a reunion, Mrs Grant told me about it and said she had never met a child as straightforward and honest as me. I had, it seems, completely knocked the wind out of her sails with my open inability to dissemble. Well, I haven’t changed much.
My Loved One is seriously ill. Alzheimer’s is a terminal disease and that means that sooner or later it will kill him. And I can’t – absolutely can’t – pretend otherwise. I don’t spell it out to him, obviously, although occasionally he is both lucid and realistic and we have sometimes talked a bit about the future and the inevitability of where his illness is taking him when that’s what he wants. In general though, I just jolly him along. I can’t lie – never could – but I do my best to keep it light and casual.
I’m open with everyone else, though, to such an extent that I sometimes forget appropriateness. I found myself providing a graphic account – far too much information – of our frequent nocturnal bathroom trips to a sympathetic friend over lunch the other day, for example. She managed not to wince, bless her.
And I really should not have asked our elder son whether you can hire a church for a secular funeral. No wonder he looked askance, gulped, paused and finally said faintly: “Don’t you think you’re being a bit premature?” The trouble is that my very active brain is perpetually beavering away and coming up with a detailed plan of action for every eventuality. It’s my way of coping.
These blogs are, I suppose, another aspect of that. What you get here is the bald, bleak unvarnished truth. When I started them almost two years ago I asked My Loved One’s permission to write about his condition and he gave it readily. At the time he said, quite sensibly, that it’s easier all round if there are no secrets about what’s happening to him and that my writing about his illness might help others. He used to ask quite often: “Have you been writing about me?” Then he’d potter off quite cheerfully and look at my website on his PC. I think he rather enjoyed being the centre of my authorial attention for once.
Things have moved on since then. It is many months now since he has read one of these posts. He no longer knows how to turn on his computer on (and I’ve semi-commandeered his unused office as a music room). He shows no interest if I offer to show the blogs to him on my PC or iPad. So I am now, effectively, communicating with the world without his knowledge and there’s no need to fudge anything even here.
I shall, therefore, carry on describing the situation in all its ghastly awfulness which, as a few wise people have recognised, does actually help me a bit. There is something therapeutic about truthfully writing down your experiences and feelings – it doesn’t dispel them, of course, but it somehow feels as if the horror is managed and put to one side once it’s openly committed to words.
* I’ve started a fundraiser for Alzheimer’s Society to mark our Golden Wedding at the end of March. If anyone wants to contribute here’s the link: https://www.gofundme.com/elkin-golden-wedding