The Alzheimer's Diaries: a love story
By Susan Elkin
A sardonic, powerful, loving, diarized account of caring for a partner with Alzheimer’s
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There is a lot of public misunderstanding about Alzheimer’s. This truthful, uplifting, moving book sets the record straight and describes the reality of living with the disease.
When Susan Elkin's husband, Nick, was diagnosed with Alzheimer’s in 2017, she began a blog, with his permission, about the illness and what it's really like to live and deal with it. For 28 months until his death in August 2019 she described the anger and frustration they both felt as well as making wry observations about the disease itself and the things that outsiders don’t usually understand: the incontinence, sleeplessness, mobility problems and trouble swallowing. But she also took Nick on holiday, usually single-handedly, to Amsterdam, Malaysia, Corfu, Washington, Dorset and Hexham, and to many plays and concerts, because she was determined that he should enjoy normal life for as long as possible.
The Alzheimer’s Diaries is based on the popular blogs, and is a deeply personal, chronological account of what happened and how it felt for this loving couple. It's also an important document about love, relationships and end-of-life care, about the support available (or lack of it), about how to cope with illness and dying, and about the progress of a disease that is increasingly common.
When Nick was diagnosed in 2017, a consultant said that Alzheimer’s is set to become the biggest killer in the next 20 years or so, outstripping, for example, cancer. “There is no cure”, she added. With more than 520,000 people in the UK currently living with the disease, and many more caring for them, it has never been more important to share conversations about Alzheimer's, dementia and making the most of life and love.
Often Nick made Susan laugh – deliberately or unwittingly. On other occasions his illness brought her close to despair. It’s all in this timely book. The Elkins met when Susan was only 14 and were married for 50 years, and this book is also the story of a marriage. The Alzheimer's Diaries is an essential read, both warm and honest, angry and amused, but it is, above all, a love story.
- A high quality, first-edition, hardback book.
- Based on the author's popular and moving blog.
- Approximately 368 pages, and 85,000 words.
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*Book designs, cover and other images are for illustrative purposes and may differ from final design.
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Susan Elkin
Susan Elkin is an author, journalist and former secondary English teacher. She has written extensively for most national newspapers including The Daily Telegraph, The Times, The Sunday Times, Daily Mail, The Independent and Independent on Sunday as well as dozens of magazines as varied as She, Wealden Times, Ink Pellet and The Woodworker. She was Education Editor at The Stage from 2005-2016 in which capacity she wrote three columns a week and remains a frequent contributor there. She also reviews plays and classical music concerts for various websites. Her books include Please Miss We’re Boys (Book Guild 2019), English text books and study guides (Hodder) “How to” books for teachers (Bloomsbury) and So You Want to Work in Theatre (Nick Hern Books, 2013). She is currently working on a play Goodnight Sweet Prince which, like The Alzheimer’s Diaries, is also inspired by her husband’s illness.
Now living back in her native South London after 44 years elsewhere, Susan has two grown up sons, four granddaughters and a big tabby and white cat named Dave. When she’s not writing she enjoys playing her violin in two amateur orchestras, a string quartet and various other ensembles.
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08 November 2017
Wrath. Anger. Fury. I do them all every day. Expertly. And it’s all very well St Paul, a single gent who didn’t have to live with Ms Alzheimer’s, telling the Ephesians – many of whom would have been married – to resolve their quarrels before bed. I bet some of them were jolly irritated. “What does he know about it?” I can hear them muttering crossly down a couple of millennia.
Of course, if your life, marriage and home is invaded and occupied by Ms A, then you simply have to learn to put up with rubbish, recycling, food waste and garden stuff being put in the wrong bins. And it’s infuriating. Then there are the items on (very short and simple) shopping lists which are ignored, drawers and cupboards left open and things being “put away” in all the wrong places. You know it’s all going to get worse, too.
Add to that what’s said or not said. When you’ve been asked the same question – such as “Is anyone coming today?” - four or five times it’s hard to answer with calm patience and equanimity. Nick would really, in his heart of hearts, like me to give up work and everything else I do so that I’d be continuously available with kindness, cups of coffee, chocolate biscuits and various other forms of sweetness and light, but that is not on the cards, I’m afraid. If I didn’t work I wouldn’t be me and then there would we be?
The frustration is dreadful. I explain over and over again, for example, that a company’s coming to collect some rubbish this afternoon. Or that I have two tickets for a show tomorrow so we’ll both go. I do my utmost not to make a fuss when my best (almost new) omelette pan is burned out because Nick tried to make himself an omelette and walked away from it.
Then there’s speed. Or lack of it. I have always been a fairly nippy mover when I’m walking along a street or round the house for instance. And I’ve had a rule for decades whereby I don’t use the car if it’s less than a mile. I routinely take stairs instead of escalators as a way of trying to get some exercise as I go along and all that sort of thing. Until recently Nick was the same. Now he does everything very, very slowly and I’m constantly looking over my shoulder to see where he is. If I hang on to him, it’s like taking a very reluctant dog for a walk.
I automatically went bounding down the long staircase from the new platforms at London Bridge the other day. And then had to wait for two full minutes at the bottom until he had cautiously negotiated every step. I should have put him on the escalator of course but didn’t, for a moment, remember how things now are. Then I get stressy and remind myself that when I plan these excursions I now need to allow an extra half hour from the time we leave home. And the awful and devastating truth is that these days it’s actually much easier and better all round if I go on my own.
I try very hard not to let any of this show. But of course, after a bit, human nature bursts forth and I blow up like a volcano about something really trivial. Then, like Etna, I’m inclined to smoke and smoulder for days. My personal tectonic plates are pretty volatile. Let not the sun go down upon your wrath? If only. Ms A. meet St Paul. St Paul meet Ms A.
At the weekend Nick was upset because I’d done my Etna thing about something very minor that he’d forgotten to do. “I try bloody hard to look after you, be there for you, do everything else that has to be done and keep smiling but it’s an uphill struggle” I snarled.
“Well you’re failing” he said. Great.
Then, the next day, a bit diffidently: “If I could remember what I said that upset you, I’d apologise.” Well, in the end the sheer ridiculousness of life with Ms A made us both laugh.
PS Sunday Telegraph (5 November) had a strapline about a “vampire cure” for Alzheimer’s. A leftover from Halloween or is 5 November morphing into the new 1 April?
- 11th November 2020 New blog - that old fleece
Even an old coat tells a story, There's a new blog about Nick's scruffy old grey fleece on my website. http://susanelkin.co.uk/articles/fleeced/
27th October 2020 "Medical Stuff"In my home office I had, until this week, a deep plastic filing box marked "Medical Stuff" - paperwork, his and mine.
Probably time to go through it and throw out everything obsolete (or something), I thought. The paper was twelve inches deep: letters from Lewisham Hospital, from the consultant psychiatrist, the occupational therapist, the podiatrist, the palliative care nurse and so on and on…
21st October 2020 Watch strapYesterday, I had a day off from routine freelance journalism (which is beginning to come in again, thank goodness) and went to Brighton. I'd agreed to meet my third granddaughter from school and then have supper with her and her mum after work. I went down earlier in the day by train because I wanted to do some shopping and I hadn't been into Brighton city centre, which I rather like, for a while…
17th September 2020 Alzheimer's month discount code: ALZ20Well, since the last update I have sailed through the last of the first year anniversaries. Nick's funeral (I wore celebratory emerald green and we played a lot of the music he loved) was on 12 September 2019. This year on the 12th, by chance, I was away for a splendid weekend on the Norfolk coast with elder son Lucas, his wife and adult daughters. We had a lot of fun and there was no time to brood…
26th August 2020 AnniversariesLast week marked the first anniversary of Nick's death. Here's a blog about it. http://susanelkin.co.uk/articles/a-whole-year/
16th August 2020 Migraine and Alzheimer'sFor the first half of his life Nick suffered very debilitating migraines which sometimes knocked him out for a whole day a week. Could there be a connection between this and the later development of Alzheimer's? No one ever mentioned this or asked us about it. New blog in support of The Alzheimer's Diaries; a love story. http://susanelkin.co.uk/articles/alzheimers-and-migraine/
10th August 2020 Early symptomNew background blog. One day, 25 years ago Nick lost his sense of smell ... http://susanelkin.co.uk/articles/anosmia/
8th August 2020 BookshopsI've been meaning to contact Crofton Books (in London, SE4) for a while. It's an impressive secondhand bookshop within Crofton Park Libary which is now run by volunteers. The owner, Jason, and I have been following each other on Twitter for some time. This week I droppped in to see him for a chat and a very pleasant experience it was too. I wanted to discuss two books with him - my Deptford teaching…
3rd August 2020 Blogs on my websiteI have started an occasional blog which shares more background to The Alzheimer's Diaries: a love story including things such as how Nick and I first met, where the illness might have sprung from and so on. Here's the link: /http://susanelkin.co.uk/articles/category/life/alheimers-diaries-blogs/
2nd August 2020 As August arrivesSo here we are back in August. This time last year I was hunched and tensed, day after day , at a bedside in Lewisham hospital. it has to be said that, lockdown and loneliness aside, I am feeling far fitter and happier now than then. Of course I miss Nick acutely but I don't miss the sad shadow of his former self that he had become by last August - or the agony of dealing with those final weeks.
…25th July 2020 Alzheimer's researchAnyone who has ever encountered Alzheimer's - or any other form of dementia - knows that this is no cure. It is stated bluntly by the professionals from day one. I presume that this truthfulness is a key part of some shared code of practice.
So research is the only hope for the 850,000 people known to have dementia in the UK at present. About two thirds of that number have Alzheimer's. Numbers…
17th July 2020 Widening the netFunding for The Alzheimer's Diaries: a love story is now at 31%. One third funded is in sight - thanks to all you generously supportive people.
I've just started a new blog on my website which gives more information about the genesis of this project. Do share the link as widely as you can.http://susanelkin.co.uk/articles/how-did-it-all-start/
I had an email conversation with John Suchet this…
8th July 2020 AnniversariesAny bereaved person will tell you that the first year is studded with stumbling blocks. Each memorable date or anniversary has to be confronted head on. And head butting can hurt.
I’m now nearly at the end of my first year of widowhood. Christmas, with fifty years of shared memories, was a bit tricky. And what would have been our 51st wedding anniversary fell six days after lockdown so I had…
3rd July 2020 A year ago ...It is exactly a year ago today (3 July) that Nick was taken to hospital, having woken in the morning unable to stand. As it turned out, he went rapidly downhill from then on and never came home again. The date stands in my mind because a) it's our second granddaughter's birthday and b) somewhat inconveniently under the circumstances I'd booked the car for its annual service.
When I decided to publish…
22nd June 2020 Positive thinkingNick confounded every medic he met. He fitted none of the tentative profiles for Alzheimer's. He wasn't overweight and was physically fit and active all his life. He had never smoked, drank very little and was a dab hand at anything requiring mental alertness such as word games and quizzes. Even in his final weeks doctors seemed to find it hard to believe that he was simply dying of Alzheimer's and…
14th June 2020 Nick's approvalWhen Nick, my husband, was diagnosed with Alzheimer's in 2017, I asked him if he'd mind if I blogged about his illness. He was a quiet, quite private sort of man and I fully expected him to be horrified. To my surprise he said: "Yes, why not? You'll do it well and it might help others".
In the event he loved it. I think it was the first time in his life he'd ever been the centre of attention. He…
These people are helping to fund The Alzheimer's Diaries: a love story.
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Val Burgess
Mrs heather Kingfisher
Isabel Rogers
Laura Buck
David Collier
Adam D'Souza
Susan Elkin
Susan Elkin
Akua Obeng-Frimpong
Jasmine Elkin
Luke Ranson
Samantha O'Reilly
Tiina Rajamets
Stewart Ross
Stewart Ross
Sharon Sellens
Dawn Kozoboli
Gillian Knight
Laura Pollard
Val Bayliss-Brideaux
Gini Wells
Robert Baxter
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