A Slip of the Keyboard (33 page)

Journalists, on the other hand—I appreciate that other people living with the disease don’t get so much of this—find it hard to talk to me about anything else, and it dominates every interview: Yes, I said I had PCA ten months ago, yes, I still have it, yes, I wish I didn’t, no, there is no cure.

I can’t really object to all this, but it is strange that a disease that
attracts so much attention, awe, fear, and superstition is so underfunded in treatment and research.

We don’t know what causes it, and as far as we know the only way to be sure of not developing it is to die young.

Regular exercise and eating sensibly are a good idea, but they don’t come with any guarantees. There is no cure.

Researchers are talking about the possibility of a whole palette of treatments or regimes to help those people with dementia to live active and satisfying lives, with the disease kept in reasonably permanent check in very much the same way as treatments now exist for HIV.

Not so much a cure therefore as—we hope—a permanent reprieve. We hope it will come quickly, and be affordable.

In the meantime we hope for Aricept, which is not a cure but acts as a line of sandbags against the rising tide of unknowing. However, it is available free only to those in the moderate stages of the disease; others must pay £1,000 a year, which I do.

Eligibility is determined by the MMSE questionnaire test, and it would be so easy for a patient in the mild stage to cheat their score into the free zone that I take my hat off to those too proud or responsible to do so. I cough up.

NICE says the change it makes at my stage is minimal, but we don’t think so in our house, where those little changes make the difference between a dull day and a fine day.

The disease is, after all, about small changes, and it may be that individuals may indeed be individual.

And that is nearly it for hope at the moment.

When my father was in his terminal year, I discussed death with him. I recall very clearly his relief that the cancer that was taking him was at least allowing him “all his marbles.” Dementia in its varied forms is not like cancer.

Dad saw the cancer in his pancreas as an invader. But Alzheimer’s is me unwinding, losing trust in myself, a butt of my own jokes
and on bad days capable of playing hunt the slipper by myself and losing.

You can’t battle it, you can’t be a plucky “survivor.” It just steals you from yourself.

And I’m sixty; that’s supposed to be the new forty. The baby boomers are getting older, and will stay older for longer.

And they will run right into the dementia firing range. How will a society cope?

Especially a society that can’t so readily rely on those stable family relationships that traditionally provided the backbone of care.

What is needed is will and determination. The first step is to talk openly about dementia because it’s a fact, well enshrined in folklore, that if we are to kill the demon, then first we have to say its name.

Once we have recognized the demon, without secrecy or shame, we can find its weaknesses.

Regrettably one of the best swords for killing demons like this is made of gold—lots of gold.

These days we call it funding. I believe the D-day battle on Alzheimer’s will be engaged shortly and a lot of things I’ve heard from experts, not always formally, strengthen that belief.

It’s a physical disease, not some mystic curse; therefore it will fall to a physical cure. There’s time to kill the demon before it grows.

What is an author to do when every other word he writes will be written for the Chancellor of the Exchequer?

Letter to
The Times
,
23 May 2009

Sir,

I am very definitely a high-rate taxpayer, although in self-defence I must admit I have become so simply by writing a lot of fairly harmless books over a very long time rather than by, for example, ripping the heart out of the financial system through unbridled greed.

So I am, therefore, somewhat peeved to find that, now, slightly more than every other word I write will be written for the Chancellor of the Exchequer, who will undoubtedly waste the money on computers that don’t work and other people’s duck shelters.

I have been enormously buoyed up, though, by hearing from journalists and other pundits that “the rich won’t end up paying the 50 percent income tax because their smart accountants will find a way around it.” When I put this to my own accountant, a senior member of a reputable London firm, he laughed and said:
“Unless you want to go and live abroad for a very long time, or associate with some extremely unsavoury people, or invest in risky tax schemes, then for someone like you there is really nothing that can be done.”

I assume he knows his stuff and the tax authorities know theirs, so why is this bland assertion repeated so regularly?

PS. I have no intention whatsoever of moving to a firm of disreputable accountants.

Mail on Sunday
,
2 August 2009

We are being stupid. We have been so successful in the past century at the art of living longer and staying alive that we have forgotten how to die. Too often we learn the hard way. As soon as the baby boomers pass pensionable age, their lesson will be harsher still. At least, that is what I thought until last week.

Now, however, I live in hope—hope that before the disease in my brain finally wipes it clean, I can jump before I am pushed and
drag my evil Nemesis to its doom, like Sherlock Holmes and Moriarty locked in combat as they go over the waterfall.

In any case, such thinking bestows a wonderful feeling of power; the enemy might win but it won’t triumph.

Last week a poll revealed that more than three quarters of people in Britain approve of assisted suicide for the terminally ill.

On Thursday, the Law Lords delivered the landmark judgment in a case brought by multiple sclerosis sufferer Debbie Purdy, who feared her husband would be prosecuted if he accompanied her to die abroad.

She wanted the law on assisted dying to be clarified and the Law Lords have now ordered the director of Public Prosecutions to draw up policy spelling out when prosecutions would and would not be pursued.

It looks as though the baby boomers have spoken and some of them, at least, hope they die before they get old—well, too old. Some have seen what happened to their parents or grandparents, and they don’t like it. Every day I remember my own father’s death. The nurses were kind, but there was something very wrong about it.

The poll result arrived at about the same time as the Royal College of Nursing announced that it was ending its opposition to assisted dying. Other signs indicate that the medical profession as a whole is at least prepared to face the issue.

I hate the term “assisted suicide.” I have witnessed the aftermath of two suicides, and as a journalist I attended far too many coroners’ inquests, where I was amazed and appalled at the many ways that desperate people find to end their lives.

Suicide is fear, shame, despair, and grief. It is madness.

Those brave souls lately seeking death abroad seem to me, on the other hand, to be gifted with a furious sanity. They have seen their future, and they don’t want to be part of it.

But for me, the scandal has not been solely that innocent people
have had the threat of murder charges hanging over their heads for committing a clear act of mercy. It is that people are having to go to another country to die; it should be possible to die with benign assistance here.

You do not have to read much social history, or move in medical circles, to reach the conclusion that the profession has long seen it as part of its remit to help the dying die more comfortably.

Victorians expected to die at home, undoubtedly assisted by the medical profession.

In those days there was no such thing as drug control—just as there was no gun control. Laudanum and opiates were widespread and everyone knew you could get your hands on them. Sherlock Holmes was one of them!

As a young journalist I once listened in awe as a ninety-year-old former nurse told me how she helped a dying cancer patient into the great beyond with the aid of a pillow. In the absence of any better medication in that time and place, and with his wife in hysterics at the pain he was forced to endure, death was going to be a friend; it was life, life gone wild, that was killing him.

“We called it ‘pointing them to heaven’,” she told me.

Decades later, I mentioned this to another, younger nurse, who gave me a blank look, and then said: “We used to call it ‘showing them the way’.”

Then she walked off quickly, aware that she had left a hostage to fortune.

I have been told that doctors do not like patients to worry that, theoretically, their GP has the expertise to kill them. Really?

I suspect that even my dentist has the means to kill me. It does not worry me in the slightest, and I imagine that, like many other people, I would be very happy for the medical profession to help me over the step.

I have written a living will to that effect, and indeed this article in the
Mail on Sunday
will be evidence of my determination in this
matter. I cannot make the laws but you have no idea how much I hope those in a position to do so will listen.

In the course of the past few years, I have met some delightful people who say they have a passion for caring and I have no reason whatsoever to doubt them. Can they accept, however, that there are some people who have a burning passion not to need to be cared for?

It appears to be an item of faith with many people I have spoken to that both doctors and nurses, at least in hospital, still have “things they can do” when the patient is in extremis.

I certainly hope this is true, but I wish we could blow away the clouds obscuring the issue and embrace the idea of ending, at their request, the life of a terminally ill person at a time and, if possible, a place of their choosing.

I write this as someone who has, regrettably, become famous for having Alzheimer’s. Although being famous is all the rage these days, it’s fame I could do without.

I know enough to realize there will not be a cure within my lifetime and I know the later stages of the disease can be very unpleasant. Indeed, it’s the most feared disease among the over-sixty-fives.

Naturally, I turn my attention to the future. There used to be a term known as “mercy killing.” I cannot believe it ever had any force in law but it did, and still does, persist in the public consciousness, and in general the public consciousness gets it right.

We would not walk away from a man being attacked by a monster, and if we couldn’t get the ravening beast off him we might well conclude that some instant means of less painful death would be preferable before the monster ate him alive.

And certainly we wouldn’t tuck it up in bed with him and try to carry on the fight from there, which is a pretty good metaphor for what we do now, particularly with “old-timer’s disease.” (My speech-to-text program persists in transcribing “Alzheimer’s” as “old-timers.” In fact, I’ve heard many people absent-mindedly
doing the same thing, and as a writer, I cannot help wondering if the perception of the disease might be a little kinder without that sharp, Germanic intonation.)

My father was a man well tuned to the public consciousness. The day before he was diagnosed with pancreatic cancer he told me: “If you ever see me in a hospital bed with tubes and pipes all over me, then tell them to turn me off.”