The foothills of dementia

Blogging can be tricky.

Is it boring ? Does it have any interest ? Is it too personal ?

The feeling that something is too personal is a great deterrent. Bloganonymity helps to protect people I know, and whose personal space and privacy I don’t want my blog to breach. Family, friends and neighbours appear here in slightly disguised form, and it’s important not to give away any secrets, especially other people’s secrets.

Sometimes there is a lengthy internal discussion about what to write about, and there are plenty of drafts that never see the dawn.

But rarely, as now, something needs to take a risk and be out there, however personal.

I have heart failure which was diagnosed a while back, when I was suddenly breathless. It wasn’t really much of a surprise: I have a hereditary heart defect which I have known about for forty years. It was what killed my father.

Health has never been something that has worried me. I have kept pretty fit, eaten abstemiously, taken lots of exercise. I am sure that if I was a dog I’d have a cold wet nose and a glossy coat. Health matters in a lot of the things I love to do: cycling, walking, shedding. I never wanted to live forever, but rather hoped just to seize the day, and fill every minute with sixty useful seconds.

Over this last year, there have been some changes, and it’s those changes that are whispering that I should write about them.

Cognitive decline is sometimes linked to heart failure, and I am in the foothills of dementia. My memory – always sharp as a tack and almost eidetic when I was younger – is failing, and leaving me living like a cat in the perpetual now.

I thought I might try to write dispassionately about this for as long as I can as it develops. At the moment it is an irritation, something that requires accommodation, something I can more or less adjust to. Nobody knows how fast it will develop, or whether its progress will be linear or more complex. Nobody knows whether there will be plateaus, or when the sharper declines will be.

Where am I now ?

Well, I first noticed the problem when I was finding it hard to remember the previous year, and realised that I had only broad outlines and no fine brush-strokes. Now I have difficulty in constructing what I did last week: dates are vague, and days blur a little. Occasionally it is hard to remember what I did yesterday, or where I cycled. The days seem to run into each other and my sense of my own time is telescoping.

Part of this might be retirement when the agenda is looser and less differentiated. No more important meetings to distinguish a particular Wednesday, and the intensity of experience more even now than before with fewer peaks and troughs.

But it is more than that. I lose thoughts, even, sometimes, mid-sentence, and can feel out of conversations. 

Friends tease me because I repeat things, and because I do not remember what they have told me. And that's exactly right. Sometimes there is just no memory to access. It is not wilful. It is just a failure of memory. It is in there somewhere, but getting it back is tricky.

It is as if you go shopping, fill all the cupboards, but then, inexplicably and disturbingly, find that the cupboards no longer have doors that can be opened, and that no end of prising with a screwdriver is going to get inside. You know the flour in in there, but there is no way of making oatcakes with it.

Recently I read a couple of articles I had published last year. They seemed fresh, as if someone else had written them. I had done endless research, and spent hours writing it up. I was pleased with the result. But now I am distanced from them, as if after a family argument the children became estranged.

Memories of the deep past are still sharp. Too sharp, sometimes, in every sense. There is no problem with recall there. It’s trying to recall recent memories which is hard, and I realise that while I might have laid them down, I cannot access them at will, but only by chance.

Similarly, reading is still a pleasure, but it is harder to retain what I have read, to marshal it coherently into something new. And it seems impossible to memorise music I love. It was always very easy to play something a coupe of times, and it would be there forever. I can still play things I learned forty years ago without the music in front of me. Now, it’s the dots or nothing. Practising a piece of Bach last year – a short piece – I could not get it committed to memory. Every time I play it now I can get through it, but it is a struggle without the dots whereas before it would have been easy.

Finding things on my computer is also an infuriating joke. Where did I file what I was writing last week ? Who knows ? Where WOULD I have been likely to file that if I had written it today ? Check through the files. Nothing. This happens so often, and if I don’t find it quickly I won’t even remember writing it.

I can remember most easily things that have been burnished by emotion. The emotional charge can be either great or awful: both help to fix memories.

The thing is, I have to adjust to knowing that this is the way things will be and that no end of lists, post-its and pictures will help in the end.

At the moment I can enjoy the things I love. I like making stuff, riding the bike, playing music, talking, being outside. And there is no diminishment in any of those things (though I find myself wondering precisely which tool it is that I am searching for now and then !).

No real point in imagining how this will end, or having my nows polluted by worries about what nexts.

Cats and other animals do not seem much troubled by anything other than the immediate present. It’s a lesson time will teach me.

I will come back to this in the blog, and you can just skip it if it is too dull, or too parochial to be of interest. It’s just meant to be my log of finding my way forward. If there is a hint of self pity, let me know. I have no patience with that and will not tolerate it in myself any more than I admire it in others.