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Listen to me
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Illustration by Jill Hunt
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Review of: Listen to me
'I cry ... for the day my grandchildren run to me and I won't recognise them. ...It's this waiting. Almost examining every day to see what you've done and then having patches when things have been really very good,and you think, no, it's a mistake'.
So says 'Evelyn', one of the speakers in this unpretentious but actually rather shattering little book which brings us direct the voices of four individuals diagnosed with early-onset memory loss. Nowadays we are more aware of the carers of those with Alzheimer's disease but the voices of the sufferers themselves are less often heard. This collection of edited recordings from four individuals, Evelyn, Jane, Hyacinth and Harry (the names they chose for the publication) does something to reddress the balance.
I confess to two conflicting reactions to this book, both overpowering. I wonder if other readers will feel the same.
On the one side the stories here, in their individuality and their human experiences, are positive ones. Harry Cayton of the Alzheimer's Society urges in his Foreword: 'it is not memory loss or muddle which these narratives demonstrate but the opposite that shines through'. And while dementia is part of some people's life journey 'it is only part. It is the whole person and the whole life that matters'.
How right he is comes through in these tales. We hear Jane, once a craft instructor and now far gone in memory-loss, but still with reminiscences of squirrels, daisies, people, her retirement party and much else; Hyacinth with her determination to be in charge of her life, her humour, and her refusal to recount (or to remember?) its darker moments: 'I'm me. I'll beat whatever's put against me ... I'm still here and I'm going to stop for many a year yet - just to torment them! (laughs)'; Harry, eager to communicate his experiences: 'I wanted people to know they're not the only people that have the Alzheimer's ... and to talk about it might help'. And there's Evelyn the 'iron lady' who had been a personal and professional carer, full of memories of her earlier years and continuing in her caring concern for her husband: 'I do worry about Robert, because as I say we've not just been married, but good companions, we laugh at the same things and - I mean, it will almost be a death for him, I'll still be here, but the me I have been will have gone'.
But already hinted in that comment there is the pain and disintegration too. My other reaction was to detest the tempting glow of celebrating the positive and bypassing the blacker aspects. I hear Evelyn shuddering at the name 'Alzheimer's', panic-stricken when she gets lost in charge of the children and is too frightened to take them out again, horrified at the thought of a post mortem, scared because even when she feels normal she knows she can suddenly act dangerously, crying for her husband: 'I feel it for him, my tears are for him'; Hyacinth's vocal rejection of comfort and help - but with what future? Jane's incoherence and incapacity to string together more than a sentence or two, mostly not even that. Even Harry, so articulate and thoughtful, often has to break off with ' I've lost my thought ... ', and ends up 'I'm scared stiff of pain, but now I think I'd rather have the pain than the Alzheimer's, because I could be doing things ... No, I've lost - I can't get it out. There's nothing in my head at all. I think I'd better stop'.
One merit of the book is perhaps that it forces both reactions. In the end I was left with the painful-joyful recognition that the voices of these and other individuals with memory loss are to be treated seriously both now and in the context of their whole lives: not only their enjoyments and their achievements but - we mustn't blink it - their fears and sufferings too. These voices move us away from the generalised 'Patient' model to an appreciation that these are indeed individuals with their own personal experiences of both joy and sorrow and - central for several of them - their special and continuing relationships with other people. The book's title is indeed apt, for both these four and others: 'Listen to me'.
Ruth Finnegan, Open University
Order on 01908 322568 or email
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Current Project
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Milton Keynes Football Project
Funded by a 'Your Heritage' Lottery grant this project will collect personal testimonies, photographs and memorabilia to document the history of football in Milton Keynes over the last 100 years. The primary source material collected will be used to create a website, exhibition, book and digital stories. more |
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