Last July, I wrote the beginnings of a post on Alzheimer’s Disease. I found out during my graduation that my granddad was going for tests to see if he had it.
That was over a year ago, and that post is still sat in my drafts document; with all the details of senile plaques being toxic to neurons and theories of neurofibillary tangles helping balance out oxygen levels…
I’ve gone back to it so many times, but I didn’t take any courses in dementia or aging – I know the brain regions and I know how chemicals affect neuronal structure.
But “severe loss of life”, I do not know about.
And I’ve found I really don’t want to know.
I think of myself as a scholar and a seeker, I’m intrigued by life, keen to understand the world and to create my own senses through writing.
I’m not sure I can even entertain the idea of being slave to a condition “which strips away your living self a bit at a time.” (Terry Pratchett)
But there I was yesterday, sat next to the man who used to laugh, to go on and on about being hospitable to others and providing a service for your neighbours. The man who hiked up mountains until a few years ago and who told me I should do whatever it was that made me happy – countering every other male in my family who went on and on about getting A-grades.
He is the only decent male role model I’ve ever had, and he is fading.
The man sat next to me yesterday was depressing, picking up on negatives which weren’t there, focusing on how “I seem to have another qualification but no one wants to employ me” and talking about how there’s no point being here when everything in his body is falling apart. (I only finished at University last Thursday, I’m not worried about not having a job yet).
And then he spoke, looking at me, trying desperately to remember my name.
Last night, I dreamt of writing to Terry Pratchett; despite his particular variant meaning he can no longer read.
My granddad does still remember my name, after prompting a few times. This is the early stage, I know. They’ll have assessed the density of the plaques and tangles and judged him “early”. Each time I visit, I see decline, and I’m reminded “it’s only going to get worse”.
They’ve taken him off the Aricept medication, as it caused side-effects to his heart. He’s still able to speak, still able to move his hands and legs, still able to pour drinks and to play croquet with us.
He’s survived skin cancer, a knee operation, eye treatment and is now losing his mind; a little bit each day.
All I find myself wanting to do is to remember every moment with him and to distil those memories of him, and the lessons he wants. I want to make a guidebook for my life with all of his knowledge and beliefs within it… so that he can still give me guidance once he’s no longer there.
~ ~ ~
I was reading Ellie’s post over at The Headologist a few weeks ago, thinking of my granddad as I read each word about the Aricept, the frustration and that sense of loss she felt as Terry would never read a word she had written.
And I realised my grandfather will probably never see my life – he may see it, but he won’t recognise it. I’ll be the first one he forgets; being the youngest (the most recent new memory), the less-often-visiting. He’ll forget my name, and not understand why I tell him about any job I get, any achievements I have… when I tell him I’m happy; that I did what he asked and did something I enjoyed… he’ll wonder why I’m telling him.
If he lives long enough to meet my kids, he will never know them, and they will never know him.
I feel I need to know about this. His wife and my mum have both asked what’s happening in his brain, and I could only open a textbook and try to read it out loud, explaining the jargon as best I could.
I don’t want to know, to foresee his future. Yet I do.
Next his speech will go, he’ll lose the ability to perform daily tasks, his long-term memory will start to fade and I will most likely be removed then.
And then, if he survives any falls and lives beyond that, he’ll reach “advanced” and will be able to perhaps use phrases of speech, fall into apathy/exhaustion and no longer be able to feed himself or move.
~ ~ ~
I cannot be a scientist when the only person who has made an effort to be compassionate and just, is leaving me. I cannot explain the biological function of plaques when the main motivation for all my studying and all my work will never see me complete it.
And I will only have memories from when I was too young to understand, to guide me in how to be a decent human being.
Mostly though, I’m mourning that he won’t be playing chess again; the game he taught me was the answer to all of life’s problems.
– Rose –
Also, this is an important documentary about the problems Terry wanted to look at with Alzheimer’s as a mental deterioration on the topic of Assisted Suicide: