Susan Elkin’s book is a week by week record of how Alzheimer’s took hold of her husband Nick and shows how crucial work has been to her ability to keep going.
Susan Elkin met her husband Nick in 1962 when she was 14 and he was 16. Fifty-four years later Nick started to be worryingly vague, forgetful and unreliable. He was diagnosed the following year with Alzheimer’s and died just two years and four months later. “There were no underlying health conditions. Alzheimer’s killed him. Quickly,” writes Susan in her book, The Alzheimer’s Diaries.
The book is a series of weekly blogs written over those two years which catalogue in detail Nick’s deterioration and Elkin’s thoughts and feelings about that, how she coped and what helped her. Her work as a freelance writer and theatre critic, which she managed to do right up to his death, was crucial.
The book begins in June 2017 with Susan coming to terms with the shock news, which she calls “a life changer like no other”. One person in 14 over 65 has dementia and, as we live longer, this is likely to increase, although younger people are also affected – the case of Bruce Willis being currently in the news.
Nick’s decline is rapid and Susan clearly charts it, including the pre-diagnosis warning signs such as his loss of the ability to park, and the sadness that accompanies watching it. She is keen to point out the myths about Alzheimer’s, the main one being that it is just about memory loss. She shows how it is a brain disease affecting all aspects of the person’s abilities, from his sense of time and space and his ability to do basic things like walking. She records with sorrow his inability to read a book, to load a dishwasher, things that were part of his daily routine and part of his sense of self. She notes his unreliability, even as she tries to find ways around it such as having daily briefings, what she calls “the unravelling of education” and more as his decline accelerates.
Then there are the struggles with bureaucracy – the NHS appointments system being a case in point as she juggles work and caring. Being a carer is a difficult adjustment identity-wise too. When addressed as such by a nurse Elkin says: “Me? A carer? No, you’ve confused me with someone else. I’m a journalist, author, bloody good former teacher, wife, mother and grandmother, but I never volunteered for that c-word thing.”
Gradually, she adjusts and keeps adjusting with the rapid onset of each new phase, with every member of the family coping in their own way. She says Alzheimer’s “isn’t something you battle against. You simply have to find ways of living with and through it.”
Apart from friends and family and her sense of humour, the thing that keeps her sane is work. She talks about never wanting to retire, adding “it’s work which keeps me sane”. “It’s a sort of escape. If I couldn’t get out and about to work, meeting people in the real ongoing world and write about it then really would topple headfirst into the Slough of Despond, and then where would we be?” she writes.
Elkin also tries to keep herself going by finding positives “sort of”, such as a closer relationship with her sons and a connection to other people who have experienced Alzheimer’s through the feedback from her blogs.
As Nick’s confusion grows, she keeps trying to reassure him by writing detailed notes when she goes out, telling him where she is and when she will be back. Eventually she has to book carers through a website when she goes to the theatre, but he rings her on her phone, worried about where she is. The cost of the carers probably outweighs her earnings, but for her long-term wellbeing it’s worth it.
Throughout she twists and turns her schedule – sleep and work – to fit the dementia and to ensure she can keep going, grabbing sleep when she can and fitting work around interruptions – often doing both in short bursts or writing a feature at 2am. She writes at one point: “I can now write features, reviews and articles despite being repeatedly interrupted and called away. I used to be quite precious about needing, say, two hours entirely to myself to get a piece of work finished. These days, Nick appears frequently: hovering in my office looking troubled, anxious or vacant.” She stops to help him and can usually recover her train of thought ten minutes later.
As the illness continues, she is reduced to mainly doing one mundane task after another – her old life over, ‘stolen’ from her by Alzheimer’s. She describes well the exhaustion and loneliness of the carer, despite the support she has around her, including occasional days away when she can catch up on sleep. Writing it down helps, she says: “There is something therapeutic about truthfully writing down your experiences and feelings – it doesn’t dispel them, of course, but it somehow feels as if the horror is managed and put to one side once it’s openly committed to words.”
As Nick’s speech goes and he cannot be left unsupervised even for a few minutes, Elkin still manages to keep working. It’s her lifeline to “Real Life”. Nick is admitted to hospital as she is trying to get a social care package in place, so fast is his decline. The enormity of what is hitting her is difficult for Elkin to absorb because of the sheer speed of it all.
After Nick dies, she keeps her deadlines and work again gives her a sense of purpose that helps her cope. The book very clearly shows what it is like as a carer on a week by week basis and how, for Elkin, work is critical to her ability to get by. As such it’s an important work and one which many struggling with looking after someone with dementia can surely identify with. It is also a useful source of information for anyone working to support carers and it shows just how important helping someone to continue working in these circumstances can be.
*The Alzheimer’s Diaries by Susan Elkin is published by the Book Guild, price £9.99.