Writing Dementia – being an article sent to The Guardian with not even the courtesy of a rejection.

“If you have tears prepare to shed them now”

I have just read another article and written by an author caring for a family member with Alzheimers. It turned out to be, as is so often the case, yet another redemptive advertisement. These pieces always have a tinge of the religious or of the psychiatrist’s chair. Having struggled to the end, the reader is meant to feel better. The illness and the caring do wonders for love and atonement and becomes almost a blessing. The reader is supposed to feel that the sufferers are better off with their suffering than without it or, at the very least, there is a balance to be found. So not all bad then. And then there is the inevitable bit of biography at the close: ‘The author has published such and such and his latest is coming out next month’ or equivalent. Redemption and publicity. There are so many of these articles, many of which end up as one of the  countless books on the theme.

This formula seems to be branded into accounts of the disease. Well, let me tell you – and I wish to remain anonymous so no advert for my books at the end – that my experience is quite other. Caring or someone with dementia is an experience that dampens everything and towers over your life like a sword of Damocles which might (and indeed does) descend repeatedly and at any moment. The illness is irregular and has its plateaus. She can feed herself, then needs the knife and fork to be placed in her hands, then has to be spoon-fed. Once one of the more brilliant minds of her generation it is now a year or more now since she uttered a single word that made any sense. You are in the seventh circle of hell and look down on the eighth which you know awaits.

How to explain? It is as if you are living with a simulacrum odr puppet whose looks and gestures, whose very voice, are a constant reminder of someone you once loved, a unique being who is nonetheless gone and is in hiding somewhere behind all those reminders, a body within which is a kind of hollowness, a deadness that is waiting to be relieved of life and left in peace.

Let me assure you there is NOTHING redemptive in this remorseless process and as for love, well the person you married and spent 40+ years of your life with is no longer there or only there in small flashes of recollection; a certain smile or familiar gesture or intonation that is worse almost than the loss itself as it grants a momentary flashback to what is lost before it disappears again. The paradox is that the more the moment shows you the person you once knew, the harder it is to deal with. Any love that remains wells up in the memory and brings on the sorrows. The overpowering emotion is mostly a kind of routine numbness where even the tears become routine, an acceptance of the inevitable, a suppression of the will, leaving only an ability to react to a situation you feel cruel and undeserved. You are living, quite literally, a life sentence for which you committed no crime, for which she committed no crime. Better this routine: the body that needs washing and feeding, the hopeless attempts at exercise, the music she no longer responds to, a kiss that is like a reflex – they call it muscle memory – and it is a horror. I have the pills ready. All this makes it harder to recall the earlier stages when at least . . .

Then there is the constant advice not to ignore yourself. ‘It won’t help your wife if you suffer or go under’. Advice to take days off, to free yourself for a while and leave her in residential care. The repeated refrain of,  ‘It’s what she would have wanted’. This is hopelessly misplaced as it takes no account of guilt which is the deadliest plague of caring. There is no redemption in guilt and it is the reverse side of the coin of love because it is love that brings it on and intensifies it to the point of weeping on the toilet.

How long before I can no longer deal with it? There remains the horror of the promise never to place her in a home.

And there is one further point: this disease, as is the case with so many others, is profoundly private and it seems like a kind of insult to the sufferers to make it public. I find it hard enough to speak about its little intricacies with friends and family – who I note reciprocate by veering off any talk of it at least with me – and yet it seems all too easy to place it openly in the papers or write books about it. This seems to me a kind of sickness. I started writing a blog and gave up for this very reason. I write this in a kind of fury, an anger at the world yet an anger that will do no good and is thus useless.

So please no more articles by professional authors using their suffering for publicity. I have published and even produced a book of poems on my wife’s suffering but

But I am not going to use this article as a vehicle to advertise my wares because Alzheimers is merely itself and spirals back into itself until it tips into a final black hole in a fury of patience.