‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s

Vanessa Aylwin in 2021.  Photograph:  Courtesy of Michael Aylwin

By the time my wife got a diagnosis, her long and harrowing deterioration had already begun. By the end, I was in awe of her

By Michael Aylwin

My wife always said she would die of Alzheimer’s. It turns out she was right about that. For years, I insisted she would not. In the end, Vanessa clinched our little argument by dying last September, but we had known her fate since 2019, the year she was diagnosed, at the age of 49. For at least three years before that, though, the realisation dawned by hideous degrees which way the debate was going.

When we met, in the mid-00s, the proposition that Vanessa did not have Alzheimer’s, nor was about to develop it, was an easy motion to defend. She was dazzling and creative, with a successful career as a marketing executive. In that context, her preoccupation with this old person’s disease came across as a little absurd.

We met on the dancefloor of a nightclub in 2004. I was 32, she was about to turn 35. Far too old for a place like that, but we were reliving former glories in honour of mutual friends – a last glance back at our careless youth. When the management turned us out after a long night of carousing into the next stage of our lives, Vanessa scribbled her number for me on a piece of paper. How she would have loved to be able to do that only 15 years later.

A few weeks into our relationship, she told me that her mum, in her 50s, was dying of Alzheimer’s and, a little later again, that she was sure to do the same. I put her fears down to general fatalism, and spent much of the following decade insisting she had nothing to worry about. Until I could no longer find plausible grounds to argue that everything was fine.

A common question is: when did the disease start? There is no neat answer. It’s possible Vanessa could feel it coming on long before any of her symptoms showed. To the outside world, though, Alzheimer’s reveals itself by subtle degrees, each one plausibly dismissed in the early stages as “nothing”. And even when they start to become obviously “something”, there is usually a range of alternative explanations. The twisted genius of this disease begins with the way it smuggles itself in under the cover of other conditions. Absent-mindedness, ageing, menopause, through depression, anxiety and epilepsy – all would be presented as perfectly plausible explanations, first by me, then by some serious experts in their field. In retrospect, though, it began with a zit on her chin.  (Click to Continue Reading)

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‘It comes for your very soul’: how Alzheimer’s undid my dazzling, creative wife in her 40s