8:10am Saturday 22nd March 2008
By Emma Clayton
Fantasy novelist Terry Pratchett says he would rather have cancer than have his "living self stripped away by Alzheimer’s."
Having spent the past five or so years helping to care for my mother - who started showing signs of dementia in her early 50s and, a decade later, can barely string two words together - I know
exactly what he means.
As a teenager I went through a phase of dreading my mum getting cancer. I’d probably become more aware of the disease generally and, at the time, the thought of losing my beloved mum to cancer
was the worst thing I could imagine. It may be it had something to do with her being a smoker; I was always nagging her to give up.
Looking back, if I could have foreseen what she has suffered for the past decade, I think I would have preferred it if she’d died of cancer.
Cancer is a devastating disease, which touches most people in some way. I watched my grandma die of it and I lost a childhood friend to it.
But if my mum had developed terminal cancer 10 years ago, instead of dementia, she’d be dead by now. We'd have grieved for her but we'd have been able to move on, comforted by happy memories of
her.
Seeing her as she is now, a shell of her former self who doesn’t really recognise us and spends much of her time confused and crying, is like a bereavement we can’t move on from.
It’s as if the mum I had has died - there’s not much left of her lovely, sunny personality, I rarely see her smile like she used to and she’s turned into skin and bone because, like
many dementia sufferers, she has problems eating.
What we’re left with is someone who’s totally dependent on us. She has a particularly vicious form of dementia that has left her blind and in a wheelchair. She has to be washed, dressed,
lifted and fed. Although she lives in her own little world she has fits of rage when she screams and lashes out because that is all she can do. She once gripped my hand and whispered "What’s
happening to me?"
For a woman who led a full, active life before she started going to pieces at the age of 55, this is a heartbreaking way to spend her final years.
My friend’s mother recently died from cancer, just weeks after it was diagnosed. I spoke to him at the funeral and he said, "Well, I had a lovely mum. She had happy times with us and her
grandchildren and we have those memories."
I won’t have memories like that of my mum. I can recall what she was like before the illness took hold, but what I fear is that when she’s gone my overriding memories will be washing and
feeding her, and trying to calm her down as she lashes out in a blind rage.
As any carer will tell you, combining a full-time job with looking after a sick relative isn’t easy, and at times I’ve snapped at her and silently cursed her for being a burden.
I’ve lost count of the number of times I’ve thought "I’m too young to be doing this" as I wipe food from her chin. All that will probably return to haunt me after she’s gone,
too. I can’t look at photographs of her as she used to be without feeling utter sadness.
And she wouldn’t have wanted any of it; the woman she used to be would have hated the thought of being so dependent on us.
"It’s a nasty disease, surrounded by shadows and small, largely unseen tragedies," says Terry Pratchett, who’s campaigning for more funding into Alzheimer’s research. At present it
is just three per cent of the funding used to find cancer cures.
For every person with Alzheimer’s, £11 is spent each year on UK research compared with £289 for each cancer patient. Yet there are nearly as many Alzheimer’s sufferers as there are cancer
sufferers and the number of people with dementia is likely to double within a generation.
And NICE, the National Institute for Clinical Excellence, has ruled that NHS patients can’t have drugs like Aricept, which can slow down the progress of Alzheimer’s in the early stages,
until their symptoms have become more advanced.
Illness, it seems, has become something of a lottery.
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