Book group: Somebody I used to know
From the April/May 2018 issue of Dementia together magazine, readers share their views on Wendy Mitchell's moving account of living with dementia.
Wendy Mitchell, a Society Ambassador, has achieved a great deal of publicity for her book, which shares her experiences since being diagnosed with young-onset Alzheimer's in 2014.
Caroline Branney, Manager of our Dementia Knowledge Centre, recommends it not only for people interested in dementia, but also for anyone looking for a 'good read'.
'The story is written in a down to earth, entertaining style,' says Caroline.
'Although friends and family may think they know what Alzheimer's is like, they don't – they should read this book!' says Alan.
'I couldn't put it down,' says PJ, a Talking Point member, even though she doesn't usually read books.
Ivor in Cumbria says the book showed him he's not alone in living with Alzheimer's. 'It's good to see her speaking out in print and on TV, putting dementia out in the open.'
Alan Rumary agrees, 'As someone with Alzheimer's, I have experienced so many of the things that Wendy describes. Although friends and family may think they know what Alzheimer's is like, they don't – they should read this book!'
Keith Oliver, another Society Ambassador living with Alzheimer's, helped us get the views of people with dementia involved in Kent's Forget Me Nots group.
'Seldom does a book inspire or move me in the way Wendy's did,' he says. 'The narrative is clear and crisp, and full of insight and wisdom.'
Chris Norris, a Forget Me Nots member, has read Wendy's book twice already. In addition to identifying with her experiences, he also found her positivity and practicality inspiring.
'I could feel the sadness in the challenges, and the joy when she yet again found a way around what dementia placed in her way,' says Chris. 'Virtually every page had a golden nugget of advice around coping mechanisms.'
'It is enlightening, empowering and gives others the strength to fight,' says Carol.
Carol Fordyce, also from the Forget Me Nots, adds, 'It is enlightening, empowering and gives others the strength to fight. It not only raises awareness, but in sharing her own ideas this also helps others to cope.'
Caroline says, 'Wendy covers everything from her own preconceptions when dementia was first mentioned, her thirst for more information and the way some friends went to ground, to when she fell off her bike, forgot her daughter's birthday and had to give up baking.'
Hillary Mead in Somerset, involved in the Society since its inception nearly 40 years ago, found many of the book's tips useful – such as labelling cupboards with photos of their contents and moving from novels to short stories and articles.
She adds, 'Wendy's book is written in such an informative, interesting, gutsy and heart-warming way, it holds the reader just having to read on.'
Elise Rendall in Kent says, 'A thought-provoking, inspiring and excellent read. It certainly deserves its place on the bestseller list and I would thoroughly recommend it to others. Two of my family members have also asked to borrow the book, so Wendy's journey and story are certainly going to be shared more widely.'
Martin Taylor, from the Forget Me Nots, relates to Wendy's determination to understand what is happening to her.
'She has two supportive daughters, but lives alone and develops strategies for coping,' he says. 'Clearly, she has always been independent and well organised – an asset now, as are her impressive computer skills.'
He adds, 'I'm glad that my wife and I were able to listen to the book read aloud on Radio 4's Book of the Week. It gave us a lot to talk about.'
Martin's wife Sarah says the book should be required reading for everyone. She says, 'Wendy laments that so many people, including health professionals, simply ''don't get it'' and she has made it her life's work to inform and educate.'
Through flashbacks, which are italicised in the book, Wendy speaks directly to the person she was before Alzheimer's – the 'somebody I used to know' in the title.
'Martin found the time switches a bit confusing when he heard it on the radio,' says Sarah. 'What they do is give the reader a picture of Wendy's past, right back to childhood visits to Blackpool with her mother.'
Janice Curtin in West Yorkshire says, 'I could recognise lots of the symptoms my husband is experiencing. This book takes you through the process of diagnosis and shows how positive steps can achieve a balanced life even with dementia in spite of out-dated attitudes of employers.'
One person's view
Of course, as a highly personal and individual account, Wendy's book cannot represent everyone's experiences.
Janice notes that it doesn't go far into the specific challenges faced by people in relationships, though she adds, 'Wendy's positivity and desire to fill her days with focus is heart-warming.'
Mervyn Brooks, another Forget Me Nots member, says Wendy has done 'a fantastic job', while underlining that everyone's experiences of dementia are different and the need for diverse voices.
'We can all learn about the importance of positivity,' says Caroline.
'I'd like to see somebody like a carpenter or bricklayer write a book about their dementia,' he says.
Caroline says, 'Not everyone can be as high profile as Wendy is, but we can all learn about the importance of positivity, reducing stigma, becoming a Dementia Friend and making our communities more dementia friendly.'
Insight and inspiration
Roy Jones in Somerset agrees, 'This book really captures the experience, triumphs and tribulations of someone trying to live well with dementia.
'There is insight and inspiration for everyone, but I would especially recommend it to all professionals involved in working with people with dementia.'
Reinhard Guss, a consultant clinical psychologist and neuropsychologist in Kent, says, 'Of the messages that permeate Wendy's writing, my favourite has to be that "there is life, laughter and adventure" to be had after a dementia diagnosis. This has already proved helpful to people I meet in our memory clinic.'
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