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Not gone but best forgotten?

Has Baroness Warnock really called for Alzheimer's patients to be 'put down'?

So does Baroness Warnock really believe that the demented have a duty to die?

I've always had a lot of respect for Warnock. Her handling of the human embryo issue was exemplary, but I can only hope she's been misquoted - and seriously - on this particular issue. 

Perhaps the fault is in it being third-hand reporting. I tried to listen to her interview with You and Yours at lunchtime, but technical difficulties prevented her from speaking. But today's Daily Telegraph's reporting of her interview with Life and Work magazine has some pretty blunt quotes in it (such as: "If you're demented, you're wasting people's lives – your family's lives – and you're wasting the resources of the National Health Service") and has understandably raised a flurry of outraged emails, mainly of the 'this is how Nazi Germany started' variety.

Many, of course, are from Christians, who believe that there's a God for whom our lives have a purpose (which I don't), and therefore equate euthanasia (and abortion) with murder, but just as many are from people working in the health service, who deal with this issue every day, or from families of sufferers.

The problem is that arguing about who gets funding in a state-funded organisation like the NHS is always a tricky issue. For instance, I don't believe the NHS should fund fertility treatment for infertile people (of which I am one) because as distressing as infertility may be, it's not exactly what you'd call life-threatening. But when it comes to the care of the most vulnerable members of society - the elderly - any suggestion that the care of such people might be a waste of scarce resources is bound to cause absolute uproar. 

I can't imagine, for instance, how my friend F has greeted this news. Her mother, who has Alzheimer's, recently moved into private residential care at a fabulous cost of something like a thousand pounds a week, and she's expected to live at least another 10 years. Clearly, this must be bankrupting the family, but equally clearly they felt they could do nothing else - she's their mother, for God's sake. In our culture, we don't just leave people by the side of the road when they get sick - we do our best to take care of them. Don't we?

Other cultures are different. The Chinese, for instance, have traditionally had little truck with 'unproductive' members of society like the elderly or disabled (the colloquial word for whom translates as 'useless'). Someone once said that China has a shortage of everything except people, and it's true that their scarcity of arable land and chronic overpopulation led over the milennia to a culture that the West would term cruel, but that the Chinese would more likely view as expedient. Suicide of the elderly in order not to be a burden on their families was part of that tradition but given that caring for those who can't fend for themselves is a luxury afforded to wealthy nations, it will be interesting to see how the Chinese change over the next 20 years as their per capita wealth increases.

But back to Warnock. I'm very much hoping that what she was actually saying was not that sick people should be put down like dogs, but that people should be entitled to make the decision themselves about how they die by setting out a living will. This would detail, long before it's needed, their wishes if they should ever become permanently disabled, demented or the like. Most of us in our own families have discussed this kind of thing from time to time and given each other informal permission to 'pull the plug' once we reach a certain stage, but most of us haven't bothered to put it in writing as yet.

The problem is, even if we did, Alzheimer's is one of those nasty little fuckers of a disease that allows people to come and go and come back again, so how anyone could ever actually make the decision to pull the plug is beyond me. It might always be murder, might it not? That would be my fear. 

At present, too, ending treatment for people at the very ends of their lives would more than likely involve simply no longer feeding them, which is a pretty hideous way to go. It's how my mother died - far kinder would be a shot of curare and get it over with, as is done in the Netherlands, where euthanasia is permitted. It took my mother weeks to die after her stroke, which she had when she was already dying of pancreatic cancer, and for the last five weeks she survived on about a teaspoon of gruel a day. Luckily for my family, the hospice and then the care home took very good and dignified care of her - washing her body and her hair, trimming her nails and playing her music, even as she mostly slept in the final 10 days. When death came, as it usually comes, in the small hours, we all wished it had come much sooner. 

So, my jury is currently out on Warnock and her remarks and I wait to see more clarification on what she actually meant and why. And, although I have a sinking feeling that she did indeed mean exactly what she said, my firm hope is that she's been misinterpreted. 


Fading from the world

William Utermohlen's self-portraits vividly chronicle his descent into Alzheimer's disease.

Some time ago, the New York Times ran a story on an exhibition of paintings by William Utermohlen that chronicle his descent into dementia. I only came across it yesterday, but thought I would share it, as I found it profoundly moving.

William Utermohlen self portrait 1996Utermohlen, now 74, was diagnosed with Alzheimer's in 1996. He now lives in a nursing home and is unable to paint.

As Utermohlen's self-portraits progressed (his own attempt to understand his disease), you can see the image of a human being once engaged in life becoming more troubled by it, less confident, the colour draining away from the palette, the spatial sense beginning to slip. His eyes retreat into the canvas, beginning to stare mutely out - in the end almost invisible.  His wife, a professor of art history, says that he knew that technical errors were creeping into his work, but did not know how to correct them. But what is left is, in a way, the essence of painting - the feeling of pure emotion on canvas. 

Perhaps these paintings move me because on a personal level, Alzheimer's is now the disease I fear more than any other. Something bodily, I feel, you might fight with your mind, but when losing your mind, what weapons can you fight it with?

William Utermohlen self portrait 2000My parents are both dead, but I am now at the age when my contemporaries are encountering dementia in theirs. A few weeks ago, one of my friends finally committed her mother to a nursing home. The fight has been exhausting. Mrs C was a tough and intelligent woman and as Alzheimer's has eaten away at her mind, her essential character has in some ways remained unchanged. But her husband could no longer cope - the endless 'sundowning', with his wife up all night, turning lights on and off, turning the gas on and off. Insistent, determined, the most difficult of patients, and yet at times like a frightened child. To see this once-confident woman consumed by fear and uncertainty has been the most heart-rending aspect of this disease for her family. 

Dementia is the cruellest of diseases, ebbing and flowing, returning people's sanity for brief seconds or minutes, them removing it again, leaving families shattered and a person finally lost unto himself. And it is looming on the horizon for many of us if science cannot make a breakthrough - to find why the brain 'oxidises', rusting like an old vessel. But all we can hope for is that they make that breakthrough - and as quickly as possible. 

I am: yet what I am none cares or knows
My friends forsake me like a memory lost,
I am the self-consumer of my woes—
They rise and vanish in oblivious host,
Like shadows in love's frenzied, stifled throes—
And yet I am, and live—like vapors tossed 

Into the nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life's esteems;
Even the dearest, that I love the best,
Are strange—nay, rather stranger than the rest.

I long for scenes, where man hath never trod,
A place where woman never smiled or wept—
There to abide with my Creator, God,
And sleep as I in childhood sweetly slept,
Untroubling, and untroubled where I lie,
The grass below—above the vaulted sky.

John Clare, Northampton General Lunatic Asylum, 1844


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