I am not ashamed to say that I cried when I read Michael Aylwin’s article (‘It Comes for Your Very Soul: How Alzheimer’s Unged My Dazzling, Creative Wife in Her 40s’, July 9). He put into words so many of the feelings and experiences that my wife and I have gone through in the more than 10 years since her diagnosis.
She, too, feared Alzheimer’s—her mother had died of the disease four years after her diagnosis. The decision to place my wife in a nursing home, 58 years after we said those vows in church, tore me apart, and it still does, even though family and social workers kept insisting that such a move was long overdue.
I am still overwhelmed by the (perhaps irrational) sense that I have failed her, while at the same time the scientist in me assures me that I have done all I could, while both my physical and mental health crumbles under the strain. I still cannot resume a life without guilt and find the weekly visits to the care home so difficult. My wife – that beautiful, dynamic, intelligent and feisty person – is in many ways gone for good, but thankfully the violence and anger have now subsided to a state of benign confusion; she is no longer sure who I am – except perhaps that I am someone she knows.
The grief and loss of conversation is so hard to bear now, but we both find solace in reading poetry to her, particularly the works of John Clare (especially Love and Memory), which expresses how we both saw and felt the natural world around us. Thank you so much, Michael, for your contribution to my recovery.
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Michael Aylwin’s article was a tough read, but with such honesty that it resonated with me on a deep level. My husband’s diagnosis was just over six months ago – a very unwanted Christmas present, but not a surprise when you live with someone you know a little.
I am absolutely terrified of what lies ahead for us. We have both been on the ‘Living Well with Dementia’ course but now the help, support and professional input is all over the place and we are more or less on our own each day. It is difficult that my husband, having both Alzheimer’s and vascular dementia, is not suitable for medication but I live in hope that the medical and financial support for people with dementia and their supporters will improve as it is clear that the numbers are increasing.
I would like you to pass on my thanks to Michael for his willingness to share his personal story. It has certainly helped me face today and I am sure it will help me in some of the many more difficult days ahead.
Name and address provided
I have, to a much lesser extent than Michael Aylwin, helped a man with dementia: a single man whose many astonishing abilities were waning and disappearing until the inevitable need for his hospitalization arose. I was deeply moved by Michael’s humanity and dedication in the face of enormously complex challenges.
Thank you, Michael, for sharing your and Vanessa’s journey through dementia-driven decline to the end – a journey many of us will walk. I hope that when that time comes for me, I will act with the dignity and dedication you describe.
Doctor Colin Bannon
Crapstone, Devon
My deepest gratitude to Michael Aylwin for his eloquent yet heartbreaking account of his beloved wife’s decline and death from Alzheimer’s. I cared for both my father and mother through Alzheimer’s and vascular dementia and have relived every step of their journey, from the burying of occasional forgetfulness to the shared feelings of guilt and relief as they entered homes when unusual aggression and dangerous behavior made it untenable for them to remain in their homes.
I held my father’s hand when he died in 2022, and did the same for my mother when she died a year later. His article left me in tears, but it also served as a catharsis.
Julie Humphries
Ramsgate, Kent