Privacy is the sexy topic of the day. Except when it comes to the relatives of people with disabilities associated with aging, writes Terry Prone
SHE told me something about her husband she should never have told me. Something I didn’t need to know and was ashamed to have learned. Something so personal, so intimate, so demeaning of him that I stood locked to the floor, gobsmacked by the confidence, forgetting to breathe.
Even if he had been a violent bastard to her down all the days of their long marriage, and she had told it to me out of a desire for revenge, it would have been awful. Even if he was long dead and but a distant acquaintance, it would have been wrong. But he was alive at the time she confided in me and survived for another four years. Nor had he been anything but good to her. Plus, she loved him. She said. Really loved him, despite the dementia. It was just that things had become impossible. She could not manage him at home. Even with help. She simply couldn’t.
That last part I could understand. Not that I have experience, but it’s easy to imagine that when a spouse is hollowed out by Alzheimer’s so they are but a carapace emptied of human reality, a silent half comatose shadow of what they once had been, then nursing home care may be indicated. You don’t need the details of untypical lasciviousness or exhibitionist incontinence or a newly physical volatility in order to grasp the reasons institutional care might become an imperative.
The terrible thing is this woman took my silence as invitation and only when two other people at the event came up and told her the workshop was starting did she stop telling me things about her husband I didn’t want to know. Another woman sidled up to me after she was gone.
“I heard what she was saying to you,” she told me.
The sidler-upper, clearly disappointed by my failure to link arms with her and celebrate this courageous breaking of silence, went off to the wellness workshop and I stood looking at the list of topics on offer in the other sessions. One of them was “Privacy: Compliance and Training”. It was oversubscribed, unsurprisingly, since privacy is the sexy topic of the day. Except when it comes to the relatives of people with disabilities associated with aging. You can share the most shocking, lamentable information about your wife, husband, mother or father if the unfortunate has developed Alzheimer’s.
One of the rules of writing for mainstream media that most of us learned at a news editor’s knee is that you cannot libel the dead. Defame one of the living, bring them into public hatred, ridicule or contempt, and you can expect a letter from their solicitor inviting you to take it back, ideally on the front page under a headline half a hand deep, while offering financial compensation of such an amount as to make the injured party feel like getting over the hurt you have done them. Do the same damage to someone who has snuffed it and you’re safe as houses.
The UK has recently had a ghastly example of this, when a man named Carl Beech, euphemistically dubbed a “fantasist”, persuaded the police that he had not only been sexually abused by Jimmy Saville as a child, but had been victimised by a paedophile ring which included lords of the realm, former heads of bodies like the British army, and a former UK prime minister, Edward Heath. Carl, known to the cops as “Nick” to protect him, was eventually found out and faces 18 years in jail, having been adjudged guilty of perverting the course of justice. Some of those he damaged are still alive, and in their old age have had their reputations shredded to such an extent that some of them are suing the police, on the basis that they were either incompetent or collusive with “Nick”.
“Of course it is a matter of public record that the Met [Metropolitan Police] apologised to me for their conduct towards me,” the 95-year-old former army chief says. “Despite this, mud sticks.”
It does. Mud has a half-life in the unchecked mental files of the populace, where, after an interval, a mention of someone once famous evokes a response like: “Oh, yer man. Yeah. Wasn’t he a child molester?” To be filed under “small mercies” is the state of the army man and a few others in their 80s and 90s, who are at least alive and capable of kicking back at Carl and others because of the grievous damage delivered to their name. The one who can’t sue is the former prime minister, Edward Heath. He’s dead, you see. Now, Edward Heath is not a man for whom I have a lot of time, but the fact is that he was traduced and the traces will flow, unstoppably, through social media and social awareness for ever and ever.
Again to be filed under “small mercies” is the fact that he is dead, and accordingly, we assume, incapable of suffering. It is that belief that leaves him and millions of others vulnerable to being defamed. In recent times, however, that inequity has been joined by another. People who, to put it bluntly, are assumed to be “as good as dead” can also be ridiculed and treated contemptuously in public, most notably those living with dementia. This month, another memoir written by a suffering spouse joins the growing number written by the de facto widows and widowers of the living demented. Not all of them are as restrained and respectful as Steph Booth’s account of living with her husband’s Alzheimer’s. But each and every one of them is creating sympathy for the writer and invading the privacy of the one written about.
IT MIGHT be suggested that the best test of the acceptability of one of these memoirs is to ask: “Were the subject, that is to say, the demented person, in the whole of their health, would they want other people to read about the demeaning disorder of their last years?”
Ask any safely sane middle-aged person that, and 99% of them will say no bloody way. But nobody asks them. And nobody writing a living will (which is kind of a waste of time, anyway) thinks to include the stipulation that none of their caring relatives is to self-aggrandise by public sharing of their wonderfulness in the face of the difficulties posed by the demented one.
A brief flurry of concern arose last week about the privacy issues surrounding tourists signing their name in the visitors’ books maintained at state-owned visitor sites.
Amazing. The remote possibility of privacy invasion offered by a scribbled entry in a visitors book creates worried headlines, while the real and present invasion of the privacy of still-living sufferers from Alzheimer’s is regarded as admirable and in the public interest.
Privacy is the sexy topic of the day. Except when it comes to the relatives of people with disabilities associated with aging