Susan Elkin’s memoir, The Alzheimer’s Diaries, provides insight and support to other spouse caregivers.

By Susan Elkin, South London, UK

So, the person you love most in the world – and with whom you’ve lived for nearly half a century – is diagnosed with a hideous, degenerative, terminal illness? Now what? 

Once Nick and I had staggered out of the consultant’s surgery in numbed shock on April 25th 2017, I howled for several hours –  distraught, despairing and horrified. 

Then, later that day, I found, from somewhere, the strength to tell the people who needed to know – immediate family and close friends who were all anxiously awaiting the result of the consultation.

By the next day my habitual practicality was kicking in. First, sighing, I downloaded the driving licence surrender form. Nick – for reasons he never understood but of course I did – had been told to stop driving immediately. I made him sign it and put a car-for-sale note out on social media.

Secondly, I invented a persona to channel my anger. Enter Ms Alzheimer’s:  a be-fanged, black-clad, insidious monster malevolently lurking in our hall waiting to claw her way into our lives. It was something to pit myself against along the lines of “Keep away from the man I love” although of course I was clear sighted. I knew she’d win eventually.  

Then I had an idea. I’ve been writing for most of my life and have done it professionally for over 30 years. Could, or should, I write about this “journey” that Ms Alzheimer’s had forced on us? Well, obviously, not without Nick’s permission. He was a quiet, quite private man so I expected him to give me an unequivocal no. To my amazement he said: “Yes, why not? When we meet people out it’s going to be much easier for me if everyone knows because they’ll make allowances – and maybe going public will help others.” 

Thus, The Alzheimer’s Diaries was born.  My blog ran weekly for 28 months from soon after diagnosis to Nick’s death in Lewisham Hospital, London on 20 August 2019. It gathered a gratifying following an many people told me they eagerly awaited the next “episode” because my grim truths were often sardonically told. Readers chuckled, apparently. The blogs are now compiled into my 2022 book The Alzheimer’s Diaries and I think Nick would be pretty chuffed.

Of course, Ms Alzheimer’s dominates the book. She’d become the third person in our marriage, worming her way at speed into every aspect of our lives. Nick’s ability to do everyday jobs fell away faster than one a week – dishwasher (of which he was formerly king), laundry, shoe cleaning, managing money, shopping and personal hygiene, for instance. The decline was frighteningly rapid. By early 2019 I’d realised that this disease really is a form of possession. The fastidious, orderly, funny, intelligent, feisty man I married back in 1969 was gone. Ms Alzheimer’s had him firmly in her clutches now. In a sense I was already widowed. Yet, his leaky, trembling body was still very much present.

I looked after Nick at home and paid carers to man-sit when I was out working. One of my jobs is reviewing theatre and concerts. Somehow, I had to keep this going so that the work would still be there for me after Nick’s inevitable death – which it was and is, thank goodness. 

One morning he was unable to stand so he was taken to hospital – where he died seven long weeks later with me and both our sons at his bedside. He was just 74 and we’d been married for 50 years and 4 months, having first met when I was 14 and he was 16.

My message to other people involuntarily obliged to share their lives with Ms Alzheimer’s is to confront the truth. Denial is both negative and unhelpful. This illness ends in death so live every moment to the full while you can. Keep smiling – there is humour in everything – and, believe me, you WILL, find the strength to get through it. Moreover, it wasn’t my reason for doing it at the time, but if analysing and recording your feelings seems therapeutic, then get your pen out or switch on the computer. With hindsight, I think, the blogs helped me to feel empowered. 

Bio:

Susan Elkin is a British former teacher of secondary school English from South London. She has been writing professionally since 1990: journalism for newspapers, magazines and websites and over 50 books. So, when her husband, Nick was diagnosed with Alzheimer’s disease in 2017, blogging about it came naturally. Those blogs, which ran until Nick’s death in 2019, are now compiled into her new book, The Alzheimer’s Diaries. She has two sons, four granddaughters and a nice tabby and white cat. 

Contact and follow Susan:

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