Memoir is a great device to put readers in the shoes of the author. When writing about dementia it is often expressed as an emotional journey with a baffling beginning. We are so lucky that many talented people have taken the time to share with us in a variety of voices and from a variety of perspectives the slice of life that is their intersection with dementia.
Somebody I Used to Know by Wendy Mitchell (2018)
When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run – the various shades of her independence – were suddenly gone.
Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know gets to the very heart of what it means to be human. A phenomenal memoir – it is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.
Green Vanilla Tea : One Family’s Extraordinary Journey of Love, Hope, and Remembering by Marie Williams (2013)
With literary finesse, compassion, and a powerful gift of storytelling, Marie Williams writes poignantly of her husband Dominic’s struggles with early onset dementia at the age of 40, and how their family found hope amidst the wreckage of a mysterious neurological condition. Spanning between moments of intense joy and incredible sadness, this book is a passionate testament to one family’s unconditional love for one another.
The Story of My Father by Sue Miller ‘(2003)
n the spring of 1986, Sue Miller found herself more and more deeply involved in caring for her father as he slipped into the grasp of Alzheimer’s disease. The Story of My Father is a profound, deeply moving account of her father’s final days and her own response to it. With care, restraint and consummate skill, Miller writes of her struggles to be fully with her father in his illness while confronting her own terror of abandonment, and eventually the long, hard work of grieving for him. And through this candid, painful record, she offers a rigorous, compassionate inventory of two lives, a powerful meditation on the variable nature of memory and the difficulty of weaving a truthful narrative from the threads of a dissolving life. This is a truly remarkable book from one of America’s best loved authors.
Who will I be when I die? by Christine Bryden (2012)
Christine Bryden was 46 years old when she was diagnosed with dementia, and in this book she describes her remarkable emotional, physical and spiritual journey in the three years immediately following. Offering rare first-hand insights into how it feels to gradually lose the ability to undertake tasks most people take for granted, it is made all the more remarkable by Christine’s positivity and strength, and deep sense, drawn in part from her Christian faith, that life continues to have purpose and meaning.
Iris: A Memoir of Iris Murdoch by John Bayley (1998)
In 1998 John Bayley wrote a best-selling, critically acclaimed memoir of his wife, the great philosopher and novelist Iris Murdoch, who had been diagnosed with Alzheimer’s disease in 1996.
At times unbearably moving, at times poignantly comical, this memoir provides a fitting memorial to Dame Iris. It is an enchanting portrait of a remarkable marriage and an inspiration for anyone whose life is affected by Alzheimer’s.
Losing Clive to Younger Onset Dementia: One Family’s Story by Helen Beaumont (2009)
Clive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before. Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee.
Slow Dancing with a Stranger Lost and Found in the Age of Alzheimer’s by Meryl Comer (2014)
When Meryl Comer’s husband Harvey Gralnick was diagnosed with early onset Alzheimer’s disease in 1996, she watched as the man who headed hematology and oncology research at the National Institutes of Health started to misplace important documents and forget clinical details that had once been catalogued in his mind. With harrowing honesty, she brings readers face to face with dementia using her personal experiences to put a face to a misunderstood disease.
What the hell happened to my brain?: Living Beyond Dementia by Kate Swaffer (2016)
Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.
Green Nails and Other Acts of Rebellion Life After Loss by Elaine Soloway (2014)
Early in 2009, after more than a decade of marriage, Elaine Soloway’s husband, Tommy, began to change—exhibiting inappropriate behaviors at times, becoming inexplicably weepy at others. More troublesome, he began to have difficulty finding words. Ultimately, Tommy’s doctors discovered that he had frontotemporal degeneration—a diagnosis that explained Tommy’s baffling symptoms and transformed Soloway from irritated wife to unflappable, devoted caregiver in one fell swoop. In Green Nails and Other Acts of Rebellion Soloway documents Tommy’s deteriorating health and eventual death, shedding light on the day-to-day realities of those who assume the caregiver role in a relationship with uncompromising honesty and wry humor.
Keeper: A Book about memory, identity, isolation, Wordworth and cake… by Andrea Gillies (2010)
Can our personalities be taken away from us? Are we more than just the sum of our memories? What exactly is the soul? Three years ago, Andrea Gillies, a writer and mother of three, took on the care of her mother-in-law Nancy, who was in the middle stages of Alzheimer’s disease. This newly extended family moved to a big Victorian house on a headland in the far, far north of Scotland, where the author failed to write a novel and Nancy, her disease accelerated by change, began to move out of the rational world and into dementia’s alternative reality. This book is a journal of life in this wild location, in which Gillies tracks Nancy’s unravelling grasp on everything that we think of as ordinary, and interweaves her own brilliantly cogent investigations into the way Alzheimer’s works. For the family at the centre of this drama, the learning curve was steeper and more interesting than anyone could have imagined.
Where the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley (2016)
Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies, the calculating Peggy Kenter on Nashville, or the wife of country megastar Brad Paisley. But in 2014, Williams-Paisley revealed a tragic secret: her mother had been diagnosed with a rare form of dementia called primary progressive aphasia at the age of sixty-one.In Where the Light Gets In, Williams-Paisley tells the full story of her mother’s illness, from diagnosis through the present day, drawing on her memories of her relationship with the fascinating, complicated, and successful woman who raised her so well.
Writing life histories : a guide for use in caring environments / Robin Dynes (2011)
Writing Life Histories is a practical handbook which gives clear guidance on how to put together life histories in supportive or residential settings.
Life Writing and Dementia Care: A Project to Assist those ‘with Dementia’ to Tell their Stories / Richard Freadman and Paul Bain (2016)
This essay describes the first phase of a project in which life writing is used as a form of person-centred care for people who have, or appear to have, dementia. Section one of the essay considers the relationship between the academic field of life writing and the uses of life narrative in dementia care. Examples of published dementia life writing are cited; topics discussed include conventional cultural understandings of dementia; the distinction between dementia; and the evolving part that narrative therapy of various kinds may play in an individual’s dementia journey.
in Life Writing Vol 13, No 1, 105-126
Available from the Dementia Australia library