This is something of an unusual review for me: in the six years of Being Anne’s existence, you won’t find more than a handful of reviews of non-fiction books. And I suspect some might be surprised by my choice of subject matter: I’ve been assiduously avoiding any novels dealing with dementia over the last few years, other than with the lightest of touches, preferring to keep reading as my escape from what has become my daily reality as daughter and carer.
But this week is the Alzheimer’s Society’s Dementia Action Week, encouraging everyone to take action by starting a conversation with someone living with dementia: you can find out more here, and the hashtag is #AskUsAnything. I have such conversations daily – with my mother, and the other residents of the care home dementia wing where she now lives – and I can certainly attest to the presence of “emotional memory”, and the impact that lasts far longer than any memory of an event.
I decided I’d mark the week by taking a closer look at a few books focused on dementia and its impact. The one I chose to read was What Dementia Teaches Us About Love by Nicci Gerrard, published by Penguin on 4th April: my thanks to the publishers for my e-copy, provided via netgalley. Like me, you might know the author best as half of the Nicci French writing partnership (with husband Sean French), or as an excellent novelist under her own name: but she’s also a vociferous campaigner for dementia awareness, as well as being co-founder of John’s Campaign which had such an immense impact in ensuring the previously denied right of carers to accompany those they care for when in hospital.
‘Dementia is all around us, in our families and in our genes; perhaps in our own futures. If it’s not you or me, it’s someone we love.’
After her own father’s death from dementia, the writer and campaigner Nicci Gerrard set out to explore the illness that now touches millions of us, yet which we still struggle to speak about. What does dementia mean, for those who live with it, and those who care for them?
This truthful, humane book is an attempt to understand. It is filled with stories, both moving and optimistic: from those living with dementia to those planning the end of life, from the scientists unlocking the mysteries of the brain to the therapists using art and music to enrich the lives of sufferers, from the campaigners battling for greater compassion in care to the families trying to make sense of this ‘incomprehensible de-creation of the self’. It explores memory, language, identity, ageing and the notion of what it truly means to care. And it asks, how do we begin to value those who become old, invisible, forgotten? What do we owe them, and each other as humans? What, in the end, really matters?
I found this book absolutely stunning – written from the heart, drawing on the author’s personal journey through the decline and loss of her father together with an immense amount of research, quite beautifully presented and written with the most vivid imagery, following the unremitting progress of the disease. It begins with getting old and facing up to its presence, follows the stages of deterioration (the shame of the early stages, the return to a state of innocence, together with those rare moments of joy and beauty), looks at the challenges and changing role of the carer, and then – inevitably – deals movingly with the end, saying goodbye, and death.
“In 2015, an estimated 850,000 people in the UK were living with a form of dementia: the same number was thought to be undiagnosed. As the population ages, it is estimated this figure will increase to over 1 million by 2021 and 2 million by 2051… According to the World Health Organisation, there are around 47 million people living with dementia in the world. Someone develops dementia every three seconds.”
I read much of this book at a hospital bedside, as my mother – entering the later stages of vascular dementia – fought the advance of sepsis from an unknown source, and it looked possible that she wouldn’t pull through (I’m pleased to report that she has – and her journey continues). I found it immensely uplifting, the writing quite exceptional, and the love in which each page was wrapped made my solitary hours considerably more bearable. Nicci Gerrard really understands – I marked so many passages as I read, the most perfect prose faultlessly capturing the emotion in those scattered important moments, wanting to be able to return to them later.
“He wasn’t like a landscape, ruined and the wind ripping through it; a city, bombed; a house, demolished; a deck of cards, shuffled; a glass, dropped; a manuscript torn into shreds… He was like a man, an infinitely helpless and bewildered man, at the mercy of the world.”
This book draws together facts and figures, the most moving human stories, the author’s personal experiences through her father’s decline together with searing insights into the impacts of dementia and those who love them. It draws in the importance of art and music, the creative arts – fascinating and immensely moving accounts of the way responses can be evoked when words and understanding begin to fail. Understandably perhaps, I responded at a particularly personal level to the chapter on carers, which looks at the way previous relationships are impacted, using both statistics and personal stories that broke my heart: but the book also shines an unforgiving spotlight on the many failures in support, the “great chasm between care and ‘care'”, the overwhelming need to shift focus from “them” to “us” and question our collective humanity.
“Even when memory is gone, language is splintered and lost, recognition has crumbled, and the notion of a self is hard to hold on to, there are ways to find the human being trapped in the wreckage, to hear them and to acknowledge that they are still humans, precious, and one of us.”
Glancing at the early reviews of this book, I’m appalled by a solitary one-star – the comment being “completely unrealistic… dementia is so different in real life”. I know nothing about the reviewer’s own experience, but I really couldn’t disagree more vehemently. This book is absolutely true to my own experience, so very important, presenting so many new insights and perspectives with exceptional understanding: I’d recommend it without reservation to anyone who might be looking for an unflinching look at the human impact of dementia, moving, uplifting, and beautifully captured.
About the author
Nicci Gerrard is a writer and campaigner, a celebrated novelist and recipient of the 2016 Orwell Prize for Journalism ‘Exposing Britain’s Social Evils’. This work grew out of her father’s death from dementia in 2014 and her belief that the disease, its impact on individuals, families and wider society, needs light thrown upon it in order to improve the experience and support of those affected.
Nicci Gerrard is also co-founder of John’s Campaign, named after her father, which has campaigned to give carers of those with dementia the same rights as parents of children to accompany them in hospital. Recognised by NHS policy makers, by charities, by nurses and doctors and carers, almost every hospital across the U.K. has now signed up.
At this time, I wanted only to read one book dealing with dementia – with apologies, I need to return to reading as my escape. But here are details of three more non-fiction books I’ve added to my kindle – and will read when I feel the time is right for me (click on title or picture to see the Amazon page).
I’ve Lost My Mum by Cassandra Farren (published 19th May)
I’ve Lost My Mum tells the true, soul-bearing, account of a daughter who wants to make a difference to those whose lives have been devastated by dementia.
Cassandra’s raw and deeply moving journey shares her own struggle for strength as well as invaluable insights into this invisible illness.
This heartfelt and compelling story not only provides a deeper understanding of this cruel condition but gives hope that it’s possible to find peace when someone you love is lost between worlds.
(On her blog yesterday, Claire Baldry – in an excellent piece reflecting on the book and adding her personal experiences – said that the author “brings the whole issue to life with her honest and empathic writing style. As I read, and I watched her Mum deteriorating, I felt a daughter’s pain, but there were some warm moments too which I was privileged to experience alongside the author.” Read Claire’s full article here.)
The Little Girl in The Radiator by Martin Slevin
A tale of love, loss and family: the touching, sometimes hilarious and occasionally heartbreaking story of a man’s struggle to care for his mother after her diagnosis with Alzheimer’s disease.
Martin Slevin’s mum was a highly active, very intelligent and fiercely independent woman who ran her own business and ruled Martin and his father with a rod of iron. But after Martin’s dad dies, her life crumbles, and she becomes listless and forgetful. Eventually, she is diagnosed with Alzheimer’s, and Martin puts his own life on hold to care for her.
Together, they embark on a journey through the various stages of the condition; the destination is never in doubt, but along the way there are many lighter moments, as she shaves the dog’s bottom, holds sing-songs with an imaginary Irish band and pins all of Martin’s socks to the wall. And all the time, the question nags away at him: who is the little girl in the radiator, with whom his mum has urgent, whispered conversations each day?
(Having read – and very much enjoyed – the kindle “taster” of this book, I had no hesitation in downloading for future reading. The Daily Mail called it “deeply loving yet wryly comic… the most moving portrait of this cruel disease you’ll ever read”.)
Where Memories Go by Sally Magnusson
Sad and funny, wise and honest, Where Memories Go is a deeply intimate account of insidious losses and unexpected joys in the terrible face of dementia, and a call to arms that challenges us all to think differently about how we care for our loved ones when they need us most.
Regarded as one of the finest journalists of her generation, Mamie Baird Magnusson’s whole life was a celebration of words – words that she fought to retain in the grip of a disease which is fast becoming the scourge of the 21st century. Married to writer and broadcaster Magnus Magnusson, they had five children of whom Sally is the eldest.
As well as chronicling the anguish, the frustrations and the unexpected laughs and joys that she and her sisters experienced while accompanying their beloved mother on the long dementia road for eight years until her death in 2012, Sally Magnusson seeks understanding from a range of experts and asks penetrating questions about how we treat older people, how we can face one of the greatest social, medical, economic and moral challenges of our times, and what it means to be human.
(I downloaded this book when I first became aware of my mum’s dementia: the reviews are wonderful, and it’s a book I very much hope to read.)