March 30, 2018

Reading carer’s stories and well researched novels can be inspiring and informative for carers


*These resources and eRsources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@dementia.org.au

new books for carers




Rain birds 
Alan and Pina have lived contentedly in isolated – and insular – Boney Point for thirty years. Now they are dealing with Alan’s devastating early-onset Alzheimer’s diagnosis. As he is cast adrift in the depths of his own mind, Pina is left to face the consequences alone, until the arrival of a flock of black cockatoos seems to tie him, somehow, to the present.

Nearby, conservation biologist Arianna Brandt is involved in a project trying to reintroduce the threatened glossy black cockatoos into the wilds of Murrungowar National Park. Alone in the haunted bush, and with her birds failing to thrive, Arianna’s personal demons start to overwhelm her and risk undoing everything.

At first, when the two women’s paths cross, they appear at loggerheads but – in many ways – they are invested in the same outcome but for different reasons.

Ultimately, unexpected events will force them both to let go of their pasts and focus on the future.

review by a carer
"I have just finished reading 'Rain Birds' by Harriet McKnight. I really enjoyed it, and could relate well to the carer - Pina - in the novel. I appreciate your observation along the lines that sometimes we can get more from fiction than reading a biographical /autobiographical account."


Somebody I Used to Know

What do you lose when you lose your memories? What do you value when this loss reframes how you've lived, and how you will live in the future? How do you conceive of love when you can no longer recognise those who are supposed to mean the most to you?

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.


The gingerbread house

Recently-redundant Tess is keen to start work on a novel and needs to make it work. She and her freelance journalist husband Donn desperately need the money and three weeks looking after Donn's aged mother while the carer takes a break seems like an opportunity to get started. She knows it'll be tough looking after Eleanor, who has increasingly severe dementia, but she'll surely find some time for herself, won't she? Arriving at the isolated country house their daughter Katia has named The Gingerbread House, a tearful Tess begins to realise that she has a far more difficult few weeks ahead than expected. Her mother-in-law is now in need of constant attention and Donn can't help as he has to stay in town for work. Narrated by Katia - their only child - who prefers not to speak but observes everything, The Gingerbread House is a deeply moving and compassionate story of a family and its tensions and struggles with her grandmother's dementia, as the reclusive teenager describes the effect it has on everyone in a strangely detached but compassionate way. But as the situation regarding her grandmother's care unfolds, a family tragedy even closer to home reveals itself.
reviews 

'Charming, funny, tender and sad, and devastatingly readable. I will never forget it.' 
'Frank and incredibly moving.' 

Alzheimer's - life in reverse
After graduating with honours from Sydney University, Philip Minter undertook post graduate studies in America, leading to a Ph D. At about this time, he was introduced to his future wife, Mary, and after a brief courtship, they married in January 1959. The book then tells the story of their life together as they followed their careers, including the arrival of their two daughters, Elizabeth and Margaret in Australia and USA. All went well for several years until Mary began to show an early sign of dementia – forgetfulness. Other symptoms followed and she was diagnosed with Early Onset Alzheimer’s Disease in the mid-1980s. The effects and progressive nature of this pernicious disease are then carefully documented until Mary’s eventual demise, some 15 years later.
The great value of this book lies in its forthright telling of the relentless nature of Mary’s ever worsening symptoms and the loving care needed to make her as comfortable as possible. It is written in a straightforward manner with short chapters that describe the neurological effects of Alzheimer’s disease, and in passing, informs the reader much about life in America at that time.
Ebooks to download and read include:
  • On Pluto 
    Greg O’Brien, an award-winning investigative reporter, has been diagnosed with early-onset Alzheimer's and is one of those faceless numbers. Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. O’Brien is a master storyteller. His story is naked, wrenching, and soul searching for a generation and their loved ones about to cross the threshold of this death in slow motion. On Pluto: Inside the Mind of Alzheimer’s is a trail-blazing roadmap for a generation—both a “how to” for fighting a disease, and a “how not” to give up!
  • New York Times Bestseller
    Emmy-award winning broadcast journalist and leading Alzheimer’s advocate Meryl Comer’s Slow Dancing With a Stranger is a profoundly personal, unflinching account of her husband’s battle with Alzheimer’s disease that serves as a much-needed wake-up call to better understand and address a progressive affliction.


    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 encyclopaedically in his mind. With harrowing honesty, she brings readers face to face with this devastating condition and its effects on its victims and those who care for them. 


    Detailing the daily realities and overwhelming responsibilities of caregiving,Comer sheds intensive light on this national health crisis, using her personal experiences—the mistakes and the breakthroughs—to put a face to a misunderstood disease, while revealing the facts everyone needs to know.

    Pragmatic and relentless, Meryl has dedicated herself to fighting Alzheimer’s and raising public awareness. “Nothing I do is really about me; it’s all about making sure no one ends up like me,” she writes. Deeply personal and illuminating, Slow Dancing With a Stranger offers insight and guidance for navigating Alzheimer’s challenges. It is also an urgent call to action for intensive research and a warning that we must prepare for the future, instead of being controlled by a disease and a healthcare system unable to fight it.
  • Where the Light Gets in : Losing My Mother Only to Find Her Again

    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 music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. "Where the Light Gets In" tells the full story of Linda s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, "Where the Light Gets In" is a heart warming tribute to the often fragile yet unbreakable relationships we have with our mothers."
eAudiobooks
  • When your parent becomes your child : a journey of faith through my mother's dementia [available in book or CD]
    by Ken Abraham
    As he chronicles his own mother's degenerative condition, New York Times best-selling writer Ken Abraham educates while offering inspiration to help readers cope with and manage their family circumstances. With humor and spiritual reminders of God's command to honor our parents, Abraham encourages readers through often-difficult responsibilities. And though in most cases patients will not recover this side of heaven, he suggests many practical things that families can do to make the experience safer, kinder, and more endurable for everyone involved.

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