In the week that John Suchet made his wife’s dementia public, Carol Sarler questions this revelatory trend. Is it really what the sufferers would have wanted?
Her end, when it came, was beyond ghastly. Iris Murdoch, one of our doughtier literary intellects, was reduced to screaming, drooling delirium at one end of her frail body and to defecation without any sense of suitable time or place at the other. All of this we know because, exactly 10 years ago, her husband told us, when he wrote of ‘the lady whom I sat on the loo this morning, wiped her bottom and scrubbed her hands and her brown fingernails’.
John Bayley’s book was a lucrative best-seller and its film a box office success, sweeping up an Oscar for Jim Broadbent, playing Bayley, as well as nominations for Dame Judi Dench and Kate Winslet who both played Murdoch. Not a bad haul, you might think, for one demented old darling — even though, at the time, I did write of my own unease that this might not, in fact, have been quite the tribute she would have wanted. What none of us could have predicted then was that Bayley’s memoirs would start a vogue that finds us, a decade later, awash with a pornography of incontinence.
They’re all at it. The better-known rush to detail the decline of those whom they love or, at any rate, loved. Alan Bennett and Roy Hattersley weighed in soon after Bayley on their mothers, as did author Jill Murphy on hers, when she confided to an interviewer that the whole house was daily soaked in urine. More recently, Cliff Richard, Carol Thatcher and Fiona Phillips have gone public with their parents’ dementia, as did this week John Suchet, with his wife’s. Meanwhile the unknown compensate for their lack of fame by posing with their hollow-eyed charges for newspapers that really ought to know better including, in this month alone, the Times and the Independent.
The elderly have been often overlooked by contemporary media; now, suddenly, they’re all over the place — recently deceased or still just alive — but only, it seems, if they feed this festering appetite for human decay. Some stories focus on the physical, especially toilet stuff; others concentrate on the bewildered violence. Or the howling terror. Or the vengeful paranoia.
Of course, nobody would suggest we ignore these things. With 700,000 Alzheimer’s patients and with funding running at a fraction of that afforded to all our cancers and heart diseases combined, public awareness is a necessary combatant. And no doubt it is the raising of such awareness that most of our tell-tales would say is their motive. The question is, are the tales properly theirs to tell?
It is just possible, I suppose, that at the point of diagnosis, while reason still has free run of the brain, each and every soon-to-be-demented spouse turns to wife or husband to urge them to broadcast every last twist and turn of the impending potty training. Possible. But I kind of doubt it, don’t you?
The Independent’s piece gave the game away: a close-up picture of a clearly afflicted man, with his wife holding his hand, is captioned, ‘Her harrowing story’ — which, I know, it is. But it’s his harrowing story too, and while she gave her consent to be photographed and published, he did not. Could not. It is a critical difference that, even if she is too addled and exhausted to recognise, the newspaper surely should.
There are shades here of the perpetual debate on kiss-and-tells, whose defenders argue that the ‘right’ to privacy of one participant cannot outweigh the ‘right’ of the other participant to speak out, thus leading us back, again, to ‘her harrowing story’. The issue, however, is not the same; in a classic kiss-and-tell, the maligned party retains the choice to refute or revise the account. Even Prince Charles or Sir Paul McCartney could have their two penn’orth if they wished.
The Alzheimer’s patient, having his or her intimacies hung out to dry under the grim gaze of a prurient rabble, retains no choice at all. And as for whether they would so wish, I find it inconceivable that any would opt for their dignity to be stripped in such a manner that nobody could possibly think of them in quite the same way again.
Roy Hattersley’s mother, for instance, was a redoubtable Lord Mayor of Sheffield. When she died, in 2001, at the age of 96, the obituaries trotted out such words as ‘formidable’ which, you fancy, she would have rather liked. Yet once her son had described her descent into her later years, any who read him could not help but feel the ‘formidable’ diminished; as with Iris Murdoch, the achievements became tainted.
Alan Bennett’s Mam was, by his own description, a woman who rejoiced in her ordinariness and had a horror of attention-seeking. If that is how she was in her lifetime, it is unimaginable that she would have given a deathbed blessing for it later to be otherwise, courtesy of an unsparing description of her death. And even if you are neither famous nor related to someone who is, even if you are just the poor old chap in ‘her harrowing story’ — did you not once have friends, colleagues and ex-lovers whose memories you would prefer to be unsullied by words or pictures of your wretched decomposition?
These memories matter, particularly in an increasingly secular society where, for many, the memories themselves are our afterlives. A favourite reading at humanist funerals is a Brian Patten poem that has no truck with religious eternities: ‘So, how long does a man live after all?... A man lives for as long as we carry him inside us... Holding memories in common, a man lives.’
With this in mind, some of the dying even refuse visitors. ‘I don’t want you to see me like this,’ a friend wrote. ‘Please remember me as I was.’ He meant it; if reluctantly, I honoured it. So did his wife — we might speculate how dreadful was his death, but not a peep of it has come from her.
Nobody understood this better than Nancy Reagan. When her husband’s Alzheimer’s kicked in, he issued a dignified statement of farewell and the two of them retreated, literally and figuratively, behind tall gates. From then on, she guarded his privacy with the ferocity of a tigress; when, 10 years later, he died, the only pictures available still showed the suspiciously white grin, peculiarly dark hair and clean, clear, calculating eyes. Memories remained intact, as he (and you and I?) would have wished.
It’s not as if there aren’t ways to raise awareness of disease without making freak shows of its victims. Anonymity may be achieved by journalistic devices, from the changing of names to refusing the photographer, to claiming, in finely honed tradition, that your story is but an amalgam of many, following ‘intensive research’.
You want it more graphic? Fictionalise it then. No real-life story ever shot an issue to the top of a political agenda like Cathy Come Home, in 1966, and it did so without exposing a real woman’s real grief to anybody. Soap operas, notably EastEnders, have done a lot to bring dementia into focus; Julie Christie’s Away From Her does as much to advance understanding of it than any number of ‘her harrowing stories’.
It’s not that these stories achieve nothing at all. But for that which they do achieve there’s a hellish price — and it’s being paid, almost always, by those who should not have to pay it.