Alzheimer’s from the inside
Everybody knows that Alzheimer’s disease causes forgetfulness and disorientation. We have all heard stories about advanced sufferers who can no longer recognise their life-partners or find their way around their own homes. Well, I was diagnosed with Alzheimer’s disease a few months ago and one thing I can report is that it isn’t as simple as that. Sure, I forget things and repeat myself sometimes, which is why I’m keen for my friends to know about my diagnosis. It lets me off the hook. I have an excuse. When I’m in the company of people who don’t know about it, I tend to stay shtum. But to me, increasing forgetfulness is relatively unimportant because something more profoundly disturbing has happened: I have become a different person.
To my friends and relations I mostly seem the same (though it is interesting to note that one of the pre-diagnosis symptoms observed by my partner was a subtly changed physical appearance) but to me (which me?) I am different. My new identity becomes apparent in conversation. Almost all questions require an answer from a particular point of view and since my old point of view has disappeared a new one must be established. ‘What do you think of so-and-so’ might once have been answered instantly by reference to an already settled opinion: ‘He’s OK when you get to know him’ perhaps. But in the new situation there will be a hesitation, a reconsideration, a dim recollection of past opinions but also the construction of a new opinion, making use as best I can of my gradually diminishing verbal and conceptual resources. The new opinion will be an aspect of the new me.
What about disorientation? Well, I am, or was, an architect, so I have always been good at orientation, and I seem to be able to find my way around almost as well as I did before. I still drive (they test you and give you a special license for a limited period), I still take longish solitary walks and I don’t get lost. The places I inhabit are still navigable and recognisable but they have changed. It is as if someone has built astonishingly accurate facsimiles of them but at a slightly different scale and in slightly different colours. I’m living in a film set, an accurate copy of the world I used to live in. This is not as daft as it sounds if you bear in mind that I am no longer the same person.
So, in the immediate, experiential sense, there is, as yet, no disorientation. But if you name a place that I ought to know perfectly well, the chances are I won’t remember where it is. Colchester, say, or Taunton or Rio de Janeiro. My mental maps are slowly falling to pieces.
I used to do cryptic crosswords, a habit I inherited from my father. You’re expecting me to say something like ‘of course now I find them impossible’. But the opposite is true. I used to finish about 50% of crosswords in the time available (I never do yesterday’s crossword) but now I finish most of them in about half the usual time. I surprise myself. I often see the answer to a clue immediately and only subsequently work out why it’s right. I have no logical explanation for this.
Motivation is weaker. I do very little because nothing seems worth doing. I’ve always liked that old saying: ‘Sometimes I sit and think, and sometimes I just sit’. Just sitting is fine if one is alone but hard to sustain when there is someone else in the room. So I read stuff. It hardly matters what. In fact I get most enjoyment (perhaps ‘comfort’ is a better word) from reading things I’ve read many times before, especially stuff that I wrote myself. I read, and then immediately re-read, chapters of books I wrote many years ago. I recently published my memoirs on ‘Medium’ and sent the link to few friends. This must have seemed like an admirably positive pursuit for an Alzheimer’s sufferer and I received a lot of encouraging comments. But the truth is that writing my memoirs was a kind of compulsion, a symptom of the disease rather than a therapy. And my compulsion now is to read and re-read them. Reading my own writings is like returning to a comfortable old armchair. Mostly the reading takes place in an actual armchair, but it also happens on buses or park benches or in cafes. Whenever I am at rest, I return to that comforting treadmill, like a mouse in a wheel or like Fergie the cat who sleeps all day on the same cushion.
I occasionally meet my friend and fellow sufferer David in a cafe and we discuss our likely futures in terms that would horrify our respective partners. We are agreed on at least one thing: neither of us wants to be a burden. We don’t want our partners to have to look after us when we no longer recognise them and the aggressiveness that often accompanies Alzheimer’s is inevitably directed at them. So we want to be put into some kind of institution. But old-people’s homes are expensive, and neither of us wants to be a financial burden, so we have a plan. The state won’t pay to accommodate old-people but it will pay to accommodate criminals so all we have to do is rob a bank and get a nice long stretch. It’s a joke, of course, but perfectly logical. Alzheimer’s sufferers, it turns out, are good at bleak logic.
