12: Contracting Alzheimer’s Disease

Not any old disease. Alzheimer’s. One day you are a bit forgetful. One day you cannot quite get your head around numbers. Too tired to read, even though you know it is not really tiredness. In two years, you will barely know your nearest and dearest.

I do not remember what it was like to be a baby. The babies I know probably don’t either, not to the extent they are able to self reflect and do more than process their experiences. But babies are full of promise, life will unfold for hem. The comparison of people with Alzheimer’s to babies mentally therefore misses this key point out. Physically they are well, the body does all it can to keep you living. But mentally, you are just no longer there. The classic case of lights on, no-ones home.

And yet there are glimpses. There are moments when suddenly the neurons line up and even the most profound Alzeimer’s suffer puts together a flash of recognition. How can you give up on someone who is in there. Someone, and this may be my greatest fear, that maybe they are still in there and just cannot get out. Trapped in the prison of the self.

Realistically I do not believe the latter. I think that goes, and tend towards the almost as heart-breaking thought that reactions of recognition are physical memories of habit rather than anything else. The alternative, these moment of Flowers For Algernon type remembrance would be too hard to bear.

There is a corollary to this fear, which is fear of caring for someone with Alzheimer’s. The patient may be ignorant of their scenario once it has set in, you live with it 24/7 with someone who looks like your loved one but no longer has much more than a semblance of the personality they once had. And the spectre of this going on indefinitely as you get older. The racking of guilt when you consider leaving them with others, the consequence of sending them to a home. All horrific to me.

But why Alzheimer’s particularly for me. Simple. It is in my family. My Uncle contracted it about four years ago, at a relatively young age (which they suggest may be genetic). He was a favourite uncle, and my parents often compared me and my personality to him as a child. And now, he is a shadow of himself. My aunt is almost housebound by caring for him – this is not the retirement anyone envisioned. And I remember when we first started to notice, it was a source of humour. He’s been drinking to much to remember stuff, retirement is making his brain go soft. Do you watch yourself go? Do you feel yourself slipping away? Anytime I have forgotten something since my uncle was diagnosed I have paranoically considered it the first symptom. It looms over me, it is my fear.