In early 2019 I wrote this, a reflection on dementia, and on our experience of caring for my mother-in-law as the disease gradually took from her everything that made her her. Everyone I know seems either to have or to have had a parent (at least one) with dementia – it is so terrifyingly common that it starts to seem inevitable. And now my father is in a nursing home with the same condition.
He made it to 94 before diagnosis. Initially it had seemed that whilst his memory was deteriorating, his cognitive abilities were not impaired. And we had attributed some of his confusion to his sight loss – he had macular degeneration which by that time had taken all but a bit of peripheral vision. But there we were – he announced the diagnosis confidently, and without any evident distress. Things moved fairly rapidly – I have read since that (a) the later the diagnosis the faster the progress of the disease, which makes sense, and (b) that those who fend it off by keeping mentally active, by learning new stuff, challenging their brains, when they do succumb, find that dementia takes hold fast. It also seems to us that the pandemic, as it closed down so many social opportunities for him, just at the point when he could no longer use his computer to keep in touch, due to his sight loss, may have triggered a decline. And that the death of his youngest son to cancer in 2020, and the sudden death of my husband in 2021 may also have contributed – he had become accustomed to losing friends and relatives of his own generation, but these were shocking losses.
My sister, who lived with him before sight loss and dementia, took care of his practical needs, but these ramped up, and in the course of 2023 we realised that it was no longer possible for him to be kept safe at home (going ‘for a walk around the village’, making himself a coffee, getting himself into his armchair – all hazardous due to sight loss, lack of spatial awareness and general confusion). And as his dependency increased, so did his occasional bursts of anger at being manhandled and managed. This was verbal rather than physical aggression, but no less distressing when it was coming from one’s Dad. He no longer recognised the house where he had lived for 18 years, asking where his bedroom was, and when he would be returning home. He no longer reliably recognised me as his daughter, asking me about my family, and where I had lived, and found it difficult to accept my assurances of who I was, let alone to hold on to that information for more than moments.
As the dementia progressed, I was editing his memoirs. He’d started the process years before, but by the time we started to try to stitch the different sections (written or dictated via voice recognition software) together, we realised we were up against it, as his memory was becoming less and less reliable. Some later sections had to be discarded, or heavily edited after consultation between us to try to determine what had happened, when, or in what order. The process was frustrating, given that we could no longer check with him about details of his life before our own arrivals, and tricky, given that we wanted it to be very clearly his voice, but some rigorous editing and rewording was nonetheless necessary. Thankfully, we were able to put a copy into his hands whilst he was still able to recognise that this was The Book which had been his project and purpose for such a long time.
But now that the book is done, it means more to me than I’d expected. It is the record of a life well lived, a life of service and of leadership, of travel and adventure. And it’s the voice of a man who was always ready to take on challenges, to chair committees, to lead projects, and who was often asked to do so, a man who made bold decisions (to go into the aircraft industry rather than his father’s choice of the civil service, to then leave that industry because of his pacifist convictions, to move into education, and then to relocate his family to West Africa…). We still hear that voice occasionally – sometimes when we visit he is in conference mode, and asks us whether we’re booked in for the keynote talk, and whether we’ve got accommodation sorted out, or believes himself to be present in the home in some professional capacity. No wonder he resists sometimes when told to use his zimmer frame, or when carers want to shower or dress him. There’s no alternative – the mismatch between who he, some of the time, believes he is, and what he is actually able to do now is irreconcilable. But in his memoir he is still present.
Wendy Mitchell, whose books and blogs about her early onset dementia have given fascinating insight into the condition, decided that she was not willing to go on beyond the point when she was no longer Wendy, not willing to reach the point when she might not recognise her daughters, the point when dementia had stripped away everything that brought her joy. No one reading her books – and in particular her last book, One Last Thing, a passionate argument for assisted dying, and for provision to be made for people with dementia to have that choice too – could doubt that she had the capacity to make that decision and to take the necessary steps. Her final blog entry, posted after her death, explains, with her usual honesty, clarity and courage – and even humour – why and how she did so.
“If assisted dying was available in this country, I would have chosen it in a heartbeat, but it isn’t. I didn’t want dementia to take me into the later stages; that stage where I’m reliant on others for my daily needs; others deciding for me when I shower or maybe insisting I had a bath, which I hate; or when and what I eat and drink. Or what they believe to be ‘entertainment’. Yes, I may be happy but that’s irrelevant. The Wendy that was didn’t want to be the Wendy dementia will dictate for me. I wouldn’t want my daughters to see the Wendy I’d become either.”
https://whichmeamitoday.wordpress.com/blog/
That paragraph resonated so much with me. I remember my mother-in-law, who in general raged less than Dad about the indignities of her life, stubbornly removing her feeding tube whilst she was recovering from bronchitis, trying (and sometimes succeeding) in removing her neck brace after a fall, and saying to us, ‘oh, just put me in the bin’. Dad, until recently, was determined to live to be 100. These days he does not know how old he is – we think he sees himself as a much younger man, one reason why he cannot recognise us as his children – and I don’t think he would understand the question if we asked him whether he wanted to go on. Neither of them had or have the capacity to go through that rigorous thought process – not just whether, but when and how – and then carry it out. So the most we can hope for whilst Dad lives is that he is, as his care home notes often put it, ‘on average, content’. We know the trajectory of this disease is relentlessly downward, and all we can do is to work with his carers to ensure that he is as safe as possible, as comfortable as possible, as content as possible.
I don’t see any solution to this. I strongly support assisted dying legislation – it should not be beyond any sophisticated legislative system to put in place sufficient safeguards to ensure that no one is coerced or cajoled into ending their life earlier than they would wish – but I cannot see any way of that helping dementia patients. And so, as Wendy Mitchell says, it can’t be a case of assisted dying OR gold standard palliative care. Both are needed, so that people who would not be willing to choose the first option can be cared for such that their last years/months/days/hours are as peaceful, as pain-free, as possible, and so that people who lose the capacity to choose are kept safe, as content as possible, with as much dignity as possible. And that means carers and family working together.
When we read in those care notes that Dad has been raging – hurting himself and his carers, hitting out, shouting – it distresses us, of course. The care home staff take it in their stride (‘bless him’, they say as they recount the latest incident). They have a repertoire of things to try – bring in a new face, try to distract – but with the prime aim to prevent harm (to him or to them). Medication is part of this repertoire, and whilst the image of care home residents being doped into placidity is deeply troubling, the impression we have is that when the medication is working Dad can be more himself, not at the mercy of his frustration and anger, his distress eased, at least for a while so that he can enjoy his food, and chatting to the carers or to visitors.
I thought the other day of Dylan Thomas’s most famous poem, ‘Do Not Go Gentle’. I’ve always thought that the dying of the light is death, and the raging is heroic, courage in the face of the inevitable. But as I get older, my feelings about that have changed. To rage against the very idea of mortality is irrational but at the same time profoundly human – death makes no sense, that someone can be totally there and then in a moment totally, irrevocably not there. And we so often use the language of war when talking about terminal illness – so and so died ‘after a long battle with cancer’. To fight to hang on to life for as long as possible, to be with the people we love for as long as possible is, again, profoundly human. But it is also human to seek the most peaceful path, to, as a friend with terminal cancer once put it, negotiate with mortality, in order that the time remaining can be spent as richly as possible, without expending all of one’s energy in a battle against an unbeatable enemy. She found ways to enjoy those last months of life, spending as much time as possible in the countryside she loved and with the people she loved, refusing to waste that precious time on things that brought her no joy, or brought her additional pain. That isn’t always possible, but I found her approach inspiring.
Dementia is a kind of long, drawn out death, as the person is engulfed and extinguished, not all at once but little by little. Wendy Mitchell talked of ‘playing games with this adversary of mine to try and stay one step ahead’, and she did this for as long as she could, making her decision when she realised that it would soon be impossible, and taking that one last step before the disease could take it for her. For Dad, the time for attempting to outwit his dementia is long gone, and he is effectively at its mercy. There’s nothing for him to fight, and the more he fights the more he loses.
Reading the poem again now, I think of Dad’s raging, against the loss of dignity, the loss of control over where he is and what happens to him, against the loss – even if he can no longer articulate it – of the things that made him him, against the slow dying of the light. Even into his nineties, and even after his diagnosis, he talked about his ‘purpose’, questioning what it was now, how he could rediscover it. We felt, though it would not have helped to say, and he would never have accepted, that his purpose now could surely be to rest from all that striving, from leading, from driving forward. That’s gone now, except for an occasional echo in one of his circular monologues, but its loss is part of what he is so viscerally resisting.
We understand his rage, we really do. Ah, but we cannot truly wish for his last months or years to be spent burning and raving at close of day. Please, Dad, go gentle.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
(Dylan Thomas, 1947)
Passing Time 