The Innocence of Alzheimer’s

He fantasy author Terry Pratchett likes to make a joke of his Alzheimer’s. "My name is Terry Pratchett," he tells audiences at book signings or events, "I think." There are a million gags like this – sometimes witty, but invariably as charming as a night in a prison cell.

I liked Terry Pratchett’s one-liner when I heard it on the radio this week. You won’t be repeating it in the pub tonight, but for anyone whose life has been touched by the grinding unpredictability of dementia (that really is an awful word), the wry humour rings true.

My grandma suffered from a form of Alzheimer’s for as long as 25 years. It started as everyday memory lapse over names. Calling one daughter by the other daughter’s name, or running through the entire family tree before figuring out who the hell I was. Typical grandma stuff.

But towards the end of her life the lapses were over longer periods. More than 30 years had disappeared without trace, or fragments of memories refused to fully form. At times it was harrowing.

Yet despite the pain, the confusion, the 24-hour care and constant sense of injustice, not to mention guilt, there were always warm laughs.

This week, a friend mentioned a BBC documentary he watched on how a daughter and mother used humour to cope with this cruel condition. Sue Bourne filmed her mother for three years to chart their experiences. For me it began in familiar fashion.

"You know we spent the last three years filming you?" says Sue to her ailing mother. "Did we?" replies her mother, Ethel, genuinely puzzled.

There is a lot of this. Whole days spent together at the seaside are erased before they have even finished. It sounds impossibly grim, but everyone remains strangely upbeat.

We have very few traditions in our family. But one is to watch obscene amounts of television at the same time as drinking enough tea to prop up the economy during a downturn.

After five hours of unrelenting viewing, my grandma would scan the television page before a pained look crossed her face.

"We missed Countdown," she would bemoan in her soft Geordie accent, as if we had carelessly overlooked a royal visit. This was despite the fact that we’d all come unstuck on the numbers game two hours earlier.

"No, we watched it," mum, dad, brother, auntie or me would reply patiently, all eyes remaining fixed on the set.

She would settle down again before, a mere 30 seconds later, alleging we’d omitted EastEnders from our televisual feast. It would be someone else’s turn to break the bad news. The titters gave way to belly laughs, and grandma’s schoolgirl giggling fit was the most infectious of the lot.

The BBC documentary, Mum and Me, was at times hard to take. Sue and Ethel had a strained relationship, but the arrival of Alzheimer’s mellowed them both. In fact, their respective hard edges were smoothed down to such an extent that the roles of mother and daughter had completely reversed.

Sue, in her early 50s, spent much of her time changing and cleaning Ethel, in her early 80s. The parent had become child, and vice-versa.

Ethel, who gives the impression that she was once never troubled by self-doubt, forgets how to blow her nose, the death of her father 50 years ago, and even who the woman is behind the camera (it’s her only daughter). But never her ability to laugh.

This is a point Terry Pratchett made, and something I’ve seen at first hand – that everyone connected appreciates the sense of the absurd and just tries to rub along regardless. I think it’s a more accurate British trait than the stiff upper lip. There are few other illnesses as difficult to rationalise, so what else can you do?

They say comedy is tragedy plus time. But it is impossible to pigeonhole one scene in particular. Ethel is filmed chatting happily with her 17-year-old granddaughter, Holly. Ethel, for reasons unknown even to her, is under the impression they are both teenagers.

"So you’re just one year older than her?" asks a bemused Sue holding the camera.

Ethel shoots backs: "No. Two years." The three of them were in stitches.

Mum and Me’s brilliance came from its originality. And it is original because it actually exists. Terry Pratchett reckons nobody really talks about Alzheimer’s. An estimated 700,000 people in the UK have it, but just pounds11 per patient is spent annually on research into the disease, compared with pounds289 for cancer patients.

To have an Alzheimer’s sufferer treated as a normal person being slowly hollowed out, rather than a doddery old fool with little explanation why, helps retain everyone’s dignity.

By tweaking the nose of this bewildering illness, you are proving that an Alzheimer’s victim has done nothing wrong. If that was Mum and Me’s aim, it did an outstanding job.

(c) 2008 Western Morning News, The Plymouth (UK). Provided by ProQuest Information and Learning. All rights Reserved.