‘The grief and loss is hard to bear’: the cruelty of Alzheimer’s disease | Letter

I am not ashamed to say that I wept while reading Michael Aylwin’s article (‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s’, 9 July). He has articulated so many of the feelings and experiences that my wife and I have encountered across the more than 10 years since her diagnosis.

She too feared Alzheimer’s – her mother having died of the condition four years after diagnosis. Reaching the decision to place my wife in a care home, 58 years after making those wedding vows in church, tore me apart, and still does, even though family and social workers were insisting such a move was long overdue.

I still am overwhelmed by the (perhaps irrational) feeling that I have let her down, while at the same time the scientist in me assures me that I have done all that I could, with both my physical and mental health crumbling under the strain. I still cannot resume a life free of guilt, and find the weekly visits to the care home so difficult. My wife – that beautiful, dynamic, intelligent and feisty personality – has in many respects gone for ever, but thankfully the violence and anger have now abated to a state of benign confusion; she is no longer sure who I am – except, perhaps, that I’m someone familiar.

The grief and loss of conversation now is so hard to bear, but we both find solace in my reading poetry to her, particularly the works of John Clare (especially Love and Memory), who articulates the way in which we both viewed and felt the natural world around us. Thank you so much, Michael, for your contribution to my recovery.
Name and address supplied

Michael Aylwin’s article was a hard read, but with such honesty it resonated with me at a deep level. My husband’s diagnosis was just over six months ago – very much unwanted as a Christmas gift but not a surprise, because if you live with someone you kind of know.

I am frankly terrified of what lies ahead. We have both done the “Live well with dementia” course, but now the help, support and professional input is all over and we face each day as it comes more or less on our own. It is hard that, as my husband’s condition includes both Alzheimer’s and vascular dementia, he is not suitable for medication, but I live in hope that medical and financial support for dementia sufferers and their supporters will improve as it is clear that numbers are on the increase.

I would really like you to pass on my thanks to Michael for his willingness to share his personal story. It has certainly helped me to face today and I am sure it will also help me in some of the many more difficult days ahead.
Name and address supplied

I have, to a much lesser degree than Michael Aylwin, helped someone with dementia: a single man whose many amazing abilities retreated and disappeared, until the inevitable need for his admission arrived. I was deeply touched by Michael’s humanity and devotion in the face of hugely complex challenges.

Thank you, Michael, for sharing your and Vanessa’s journey through dementia-driven decline to the end – a road that many of us will travel. I hope that if that time comes for me, I will act with the dignity and devotion which you describe.
Dr Colin Bannon
Crapstone, Devon

My utmost thanks to Michael Aylwin for his eloquent yet heart-rending account of his beloved wife’s decline and death from Alzheimer’s. I nursed both my dad and mum through Alzheimer’s and vascular dementia and relived every step of his journey, from putting occasional forgetfulness to the back of my mind to the joint feelings of guilt and relief of them entering homes when uncharacteristic aggression and dangerous behaviour made it untenable for them to remain at home.

I held my dad’s hand when he died in 2022, and did the same for my mum when she died a year later. His article has left me in tears, but has also served as a cathartic release.
Julie Humphries
Ramsgate, Kent