Book group: The Alzheimer’s Diaries

We read an account by a journalist of her late husband’s Alzheimer’s, originally published as a blog.

Susan Elkin has written over 50 books, but perhaps none more personal than The Alzheimer’s Diaries

Her husband Nicholas was diagnosed with Alzheimer’s in 2017 and Susan’s book charts the progression of the disease up until his death in 2019.

Susan describes how Alzheimer’s – which she calls Ms Alzheimer’s throughout the book – affected the man she loves. 

The Alzheimer’s Diaries, by Susan Elkin

Unflinching account of Alzheimer's

Donna Stephens, in Hampshire, says the author doesn’t shy away from describing the effects of Alzheimer’s on her husband and their relationship – both the good moments and the bad. 

‘Susan personifies the disease as Ms Alzheimer’s, “a hideous, be-fanged, brain-eating monster” and the third person in their relationship,’ Donna says. 

Susan doesn’t shy away from describing with searing honesty the terrible destruction of her once vibrant life partner, and writes with such poignancy of the small but desperately sad losses of her life with her husband of over 50 years. 

‘Susan has a sharp journalist’s eye for detail. 

‘The minutiae of a diminishing life offers the reader the chance to share tiny drops of joy when they still connect with each other in a shared, witty family joke, or little drops of pure sadness when Nicholas, a lifelong “classical music geek” tells Susan, “I don’t seem to be interested in anything like that anymore.” 

‘Classical music was always part of the glue which bound their marriage.’ 

Lighter moments 

Donna says, ‘I found heart-rending parallels with current contributors to the Society’s Dementia Support Forum, who describe similar losses, with partners (or parents) losing little bits of themselves. 

‘Another parallel to the forum is the dark humour that pervades the book, the balance of lighter moments amongst the darkest despair, that makes this a compelling read. 

‘An example of this for me is when one of her sons, on Dad-sitting exercises, offers Nick a ginger biscuit and he tries to put a battery in it. 

It’s finding humour in tragedy that keeps many going.

Sharon Haggerty agrees. 

‘I wasn’t sure what to expect or how the book would make me feel,’ she says, ‘I was expecting it to be doom and gloom but how wrong I was. 

‘In a strange way, I was reading about an awful disease, yet at the end of the book my spirits were lifted, and I felt very positive for the first time in ages.’ 

Encouraging for carers

Marion Chapman in Surrey says that, despite the serious subject matter, the book is easy to read. 

‘The author pulls no punches describing Ms A living with them,’ Marion says, ‘and it’s aimed at the partner or carer rather than the person with Alzheimer’s, who isn’t likely to want to read about someone else’s decline and difficulties. 

‘Having said that, it’s very much the personal diary of the carer, and I did feel at times it was all about how busy her life was. 

‘I know you need to keep your own identity and life, and that is why I would recommend this book to someone who has a partner or parent with a diagnosis, to encourage them to keep their identity rather than become subsumed into the caring role at the expense of everything else.’ 

I felt encouraged rather than discouraged about how to live with ‘Ms A’. 

Honest reflections on dementia

Sally from Leicestershire praised the honesty in the book. 

‘Susan Elkin calls a spade a spade and describes her practical, no-nonsense approach to dealing with the arrival of Ms Alzheimer’s in her marriage,’ she says. 

‘I think the honest, reflective style of this book, together with genuine laugh out loud moments, could appeal to both carers and to a broader audience. 

‘My personal highlight listed a series of random comments made by the author’s husband in response to genuine questions or situations. 

‘On one occasion, for instance, whilst being helped to dress, he enquires whether he is expected to bow to anyone! 

‘This book could help others understand that there’s more to Alzheimer’s than a loss of memory, and that carers have to become experts in a whole range of subjects from behaviour management to mobility aids.’

Keeping your identity 

Sally thinks the book holds a valuable message for carers. 

For us carers, an important lesson the author teaches us is to protect something of our own self-identity during our caring journey. 

‘The author manages to do this by preserving her ability to work to some degree throughout the whole experience using a creative and flexible approach to when, where and how work can be done, and bringing in as much help as possible.’ 

The Alzheimer’s Diaries, by Susan Elkin (Book Guild 2022), 368 pages, £9.99 (prices vary), ISBN 9781915352293. Also available as an ebook. 

Your turn

For our next book group, we invite you to read A Family Guide to Living Well with Dementia, by Liz Leach Murphy and Jayna Patel (Critical 2023), 204 pages, £18.99 (prices vary), ISBN 9781915713063. Also available as an ebook. 

Tell us what you think about this practical guide for families, co-authored by a care professional and a journalist. Email us by the end of 5 July 2024 or comment below. 

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Dementia together magazine

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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