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| My mother favours assisted dying. Now she has dementia I’m not sure I agree | My mother favours assisted dying. Now she has dementia I’m not sure I agree |
| (about 2 months later) | |
| So it’s out. My mother, Katharine Whitehorn, has Alzheimer’s disease. She who has lived entirely by her wits has now lost them. Sounds cruel? Try watching a dignified and private person lose everything they value, suffer every humiliation you can imagine, if you want to know what cruelty means. | So it’s out. My mother, Katharine Whitehorn, has Alzheimer’s disease. She who has lived entirely by her wits has now lost them. Sounds cruel? Try watching a dignified and private person lose everything they value, suffer every humiliation you can imagine, if you want to know what cruelty means. |
| I can’t remember exactly when Kath told us what was up. We were walking on Hampstead Heath. She had been undergoing various investigations to explain, aside from her deteriorating memory, some troubling episodes of confusion, even hallucination. Now the result was in. I wasn’t hugely surprised, but still the word carried the ring of finality. | I can’t remember exactly when Kath told us what was up. We were walking on Hampstead Heath. She had been undergoing various investigations to explain, aside from her deteriorating memory, some troubling episodes of confusion, even hallucination. Now the result was in. I wasn’t hugely surprised, but still the word carried the ring of finality. |
| It would be almost the last honest conversation we’d have with her about it. Kath wanted me to make sure Fleet Street didn’t get wind of her diagnosis; she thought nobody would take her seriously if they knew (and, for the record, I did as she asked, until everyone worked it out anyway). But even when talking to her alone, the Alzheimer’s quickly became something unmentionable, skirted round, approached obliquely. | It would be almost the last honest conversation we’d have with her about it. Kath wanted me to make sure Fleet Street didn’t get wind of her diagnosis; she thought nobody would take her seriously if they knew (and, for the record, I did as she asked, until everyone worked it out anyway). But even when talking to her alone, the Alzheimer’s quickly became something unmentionable, skirted round, approached obliquely. |
| By then, she’d suffered several blows that might have knocked her flat – losing her husband of 45 years, bowel cancer, a detached retina – and through all of them, the bulwark holding back despair was her instinct to put on a brave face, try to ignore it and muddle through regardless. It was the way her generation coped, it’s how she’s coping now – and, I have to admit, it’s probably kept her sane. How many minds can contemplate their own disintegration? | By then, she’d suffered several blows that might have knocked her flat – losing her husband of 45 years, bowel cancer, a detached retina – and through all of them, the bulwark holding back despair was her instinct to put on a brave face, try to ignore it and muddle through regardless. It was the way her generation coped, it’s how she’s coping now – and, I have to admit, it’s probably kept her sane. How many minds can contemplate their own disintegration? |
| My new helper helps my family stop worrying | My new helper helps my family stop worrying |
| But for those around her, thrust into the role of carers, that approach has been disastrous. I wish, more than anything, that Kath had never got ill. But second to that, I wish that we – I, my wife and my brother – had been able to talk to her about what was happening. We tried, in various ways over the following years, to have frank discussions. But whenever we hoped she’d understand some new limitation, or accept a new level of care, we had to choose between complicity in a face-saving but ultimately pointless pretence and provoking unreasoning anger. | But for those around her, thrust into the role of carers, that approach has been disastrous. I wish, more than anything, that Kath had never got ill. But second to that, I wish that we – I, my wife and my brother – had been able to talk to her about what was happening. We tried, in various ways over the following years, to have frank discussions. But whenever we hoped she’d understand some new limitation, or accept a new level of care, we had to choose between complicity in a face-saving but ultimately pointless pretence and provoking unreasoning anger. |
| Eighteen months ago, for the first time, I installed a carer over the new year period, when nobody else could be with her. To save her blushes, I said it was just to stop me worrying. But, uncomprehending, unaccepting and furious, she gave me a rocket for it – in the pages of the Observer, no less (may you never live in a family that leaves messages for each other in the national press). Months later, again pretending she didn’t need any help, we explained another young carer as a friend in need of a room. Kath, hardly surprisingly, made her uninvited “guest” so uncomfortable that she left after two nights. | Eighteen months ago, for the first time, I installed a carer over the new year period, when nobody else could be with her. To save her blushes, I said it was just to stop me worrying. But, uncomprehending, unaccepting and furious, she gave me a rocket for it – in the pages of the Observer, no less (may you never live in a family that leaves messages for each other in the national press). Months later, again pretending she didn’t need any help, we explained another young carer as a friend in need of a room. Kath, hardly surprisingly, made her uninvited “guest” so uncomfortable that she left after two nights. |
| Polly Toynbee’s recent article, which revealed Kath’s predicament, was all about the business of assisted dying. Kath had argued for the right to die, has a living will, and would have been horrified to see herself like this. Three years ago, gripped by pneumonia, she thought she was dying, and was quite relaxed, and touchingly grateful for all that life had brought her. But now the power to let her go has fallen to me, it’s not so simple. | Polly Toynbee’s recent article, which revealed Kath’s predicament, was all about the business of assisted dying. Kath had argued for the right to die, has a living will, and would have been horrified to see herself like this. Three years ago, gripped by pneumonia, she thought she was dying, and was quite relaxed, and touchingly grateful for all that life had brought her. But now the power to let her go has fallen to me, it’s not so simple. |
| The writer Katharine Whitehorn would rather die than live like this | Polly Toynbee | The writer Katharine Whitehorn would rather die than live like this | Polly Toynbee |
| Withholding medication isn’t any more morally courageous than the ancient Greeks leaving unwanted babies on the hillside to die, and isn’t always medically straightforward. But even if we were allowed to proactively end someone’s life on their earlier instruction, should their younger self be allowed to make such decisions about the person they are now? Polly thinks so, and the young Kath might well have agreed. But the young Kath isn’t here, and the old one is, usually, pretty content. | Withholding medication isn’t any more morally courageous than the ancient Greeks leaving unwanted babies on the hillside to die, and isn’t always medically straightforward. But even if we were allowed to proactively end someone’s life on their earlier instruction, should their younger self be allowed to make such decisions about the person they are now? Polly thinks so, and the young Kath might well have agreed. But the young Kath isn’t here, and the old one is, usually, pretty content. |
| So I can’t help wondering about this vicarious sense of shame, at what Polly, in another piece on the right to die, has termed “humiliating mental collapse”. Who, exactly, is humiliated here? Who is ashamed? Not Kath, I can tell you, not any more. Should we be humiliated on her behalf? | So I can’t help wondering about this vicarious sense of shame, at what Polly, in another piece on the right to die, has termed “humiliating mental collapse”. Who, exactly, is humiliated here? Who is ashamed? Not Kath, I can tell you, not any more. Should we be humiliated on her behalf? |
| Right now, it’s all rather beside the point. What matters to me most is not how to die with dementia, but how to live with it. Almost a third of those who reach Kath’s age can expect to get Alzheimer’s or something like it. If I can say anything useful after having been through this experience, it has to be: talk about it, for God’s sake, while the conversation is still possible. Talk about how, and at what stages care of various kinds should begin. Get that power of attorney drawn up, find out about carers and homes, decide who will be trusted – not just to write cheques, but to tell the unpalatable truths. | Right now, it’s all rather beside the point. What matters to me most is not how to die with dementia, but how to live with it. Almost a third of those who reach Kath’s age can expect to get Alzheimer’s or something like it. If I can say anything useful after having been through this experience, it has to be: talk about it, for God’s sake, while the conversation is still possible. Talk about how, and at what stages care of various kinds should begin. Get that power of attorney drawn up, find out about carers and homes, decide who will be trusted – not just to write cheques, but to tell the unpalatable truths. |
| A while ago, I asked Kath what she would do if she couldn’t write her column any more. She didn’t really have an answer. Her intellectual, public side has been the one that mattered. It was the real her. She doesn’t do hobbies (she knitted a top for my newborn youngest, but made it clear it was a one-off gesture), she’s been benignly but only vaguely interested in her grandchildren, and she’s not really a culture vulture. | A while ago, I asked Kath what she would do if she couldn’t write her column any more. She didn’t really have an answer. Her intellectual, public side has been the one that mattered. It was the real her. She doesn’t do hobbies (she knitted a top for my newborn youngest, but made it clear it was a one-off gesture), she’s been benignly but only vaguely interested in her grandchildren, and she’s not really a culture vulture. |
| A right-to-die law is the only way to prevent another Gosport | Polly Toynbee | A right-to-die law is the only way to prevent another Gosport | Polly Toynbee |
| As Alzheimer’s took, one by one, all the things she thought important, she had very little to replace them with. She’s been, as much as confused, bored by the life she’s increasingly had to lead. So the other thing I’d say, from this side of the fence, is: we are not our work. Notice, value and try to be happy with the simpler things around – one day, you may find they’re all that remain. | As Alzheimer’s took, one by one, all the things she thought important, she had very little to replace them with. She’s been, as much as confused, bored by the life she’s increasingly had to lead. So the other thing I’d say, from this side of the fence, is: we are not our work. Notice, value and try to be happy with the simpler things around – one day, you may find they’re all that remain. |
| One of the saddest aspects of Kath’s public and private denial of her illness is that she’s never written about it. Professionally, she just rather drifted away, no doubt leaving many wondering what on earth had happened to her. But imagine if she’d used the insight, honesty and humour with which she talked about everything else to bring us a view of Alzheimer’s from the inside – what a gift, what a parting shot that might have been. | One of the saddest aspects of Kath’s public and private denial of her illness is that she’s never written about it. Professionally, she just rather drifted away, no doubt leaving many wondering what on earth had happened to her. But imagine if she’d used the insight, honesty and humour with which she talked about everything else to bring us a view of Alzheimer’s from the inside – what a gift, what a parting shot that might have been. |
| • Bernard Lyall is a television editor | • Bernard Lyall is a television editor |
| Katharine Whitehorn | Katharine Whitehorn |
| Opinion | Opinion |
| Alzheimer's | Alzheimer's |
| Assisted dying | Assisted dying |
| Health | Health |
| Death and dying | Death and dying |
| Mental health | Mental health |
| Dementia | Dementia |
| comment | comment |
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