‘Working kept me sane’: an account of living with Alzheimer’s in the family

How do you cope when your partner develops Alzheimer’s and rapidly declines in front of your eyes? 

Susan Elkin’s husband Nick was diagnosed in 2017 and died just two years later after a rapid decline. Her book, The Alzheimer’s Diaries, is a collection of weekly blogs from that time, charting not just Nick’s decline, but also how Susan felt, her changing emotions and thoughts and the things that helped her cope. That style lends it an immediacy that makes the reader feel they are in some way living through it with her.

Susan is very clear that the book is not “a misery memoir”, sense of humour being an important coping factor.  “There are obviously some very low moments, but you have to look beyond that. A consultant said to us at diagnosis that it is nature taking its course. You have to find a way to go with it,” says Susan.

Throughout the two years Susan, a freelance journalist and theatre critic, kept working. Indeed she says work was more vital than ever to her and kept her sane. She mentions this several times, writing at one point: “It’s working which keeps me sane. It’s a sort of escape. If I couldn’t get out and about to work, meet people in the real ongoing world and write about it then I really would topple headfirst into the Slough of Despond, and then where would we be? It has to be business as usual – for as long as possible.”

Even when she is hardly getting any sleep because of the Alzheimer’s or when Nick is constantly interrupting her concentration because of his confusion, she manages to keep working. She writes about hiring sitters to be with him when he can no longer come with her to the theatre. It was expensive, but she says that work is about so much more than the money for her.  It is also about planning for her life without Nick. Susan has never imagined retiring and she managed not to miss any deadlines when Nick died. Indeed being able to work helped her cope immediately after his death. It was Covid that she found more challenging – being bereaved and isolated with much of her work being put on hold. It was during Covid that she put the book together and tried to crowdfund it before approaching the Book Guilt. She also wrote a memoir for her family and started a book reviewing site – Susan’s Bookshelves.

Books about Alzheimer’s

Susan says she doesn’t know of any other books on Alzheimer’s written in blogs or many that talk about balancing working and caring for someone with Alzheimer’s – because it mainly affects older people. Nevertheless, there are a growing number of books on the subject of Alzheimer’s, including poetry and a play – One Last Waltz –  by an actor called Luke Adamson. A US-based voluntary organisation called AlzAuthors has brought together hundreds of examples and Susan is honoured to have been asked to join. She has written a blog for their website which will be published next month.

She hopes that with more people writing about Alzheimer’s the stigma around it will lift. She describes society’s attitude to it as being similar to attitudes towards cancer 40 years ago. “People could hardly say the word because they were so frightened by it. I think they don’t like talking about Alzheimer’s because there is no cure,” she states, saying that some people won’t read her book because they think it will be ‘a misery memoir’.

Misconceptions

Susan says that there are a lot of misconceptions about Alzheimer’s, mainly that it is just about memory loss – something that ‘memory clinics’ and the like in hospitals don’t help. “It’s a brain disease,” she says and her book describes the many ways that that affects Nick, from sleep disturbance to difficulties with walking.

Susan says she struggled at first with being considered a carer. “It surprised me. I had never occurred to me at the beginning that that was what I was,” she says. The book deals in part with the lack of understanding of what it’s like to be a carer and about her frustrations with aspects of the NHS system, particularly appointment booking. 

Susan says the feedback she has received has been “extraordinary” and that she has been very touched by it, but she is keen for the book to be in wider circulation so more people understand the impact of Alzheimer’s. She says she does still think about the two last years of Nick’s life but she also remembers the many happy times they had together. “We have been lucky. We had nearly 50 years together which were pretty good,” she says.

*The Alzheimer’s Diaries by Susan Elkin is published by the Book Guild.

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