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      Inside the Dementia
     Epidemic: A Daughter's
     Memoir

     
     
      On Wall Street Journal best seller
      list (May 1, 2015)

     


    One
    of Alzheimers.net's 2014 Top Alzheimer's Books for Caregivers

    Winner of the Memoir category of the 2013 Next Generation Indie Book Awards

    Winner of a Silver Medal in the Health/Medical category of the 2013 Readers' Favorite International Book Awards (and finalist in the Memoir category)

    Finalist, 2013 Eric Hoffer Book Award for Excellence in Publishing

    Winner of an Honorable Mention in the Life Stories category of the 20th Annual Writer’s Digest Book Awards 

    Finalist, 2013 Indie Excellence Book Awards

    Finalist, 2013 Santa Fe Writer's Project Literary Awards Program, Non-fiction category

     

       

     

     

    Inside the Dementia Epidemic: A Daughter's Memoir shares the lessons I learned over 8 years of caregiving at home and in a range of dementia care facilities. I describe not only what I learned about navigating the system, but how I learned to see Alzheimer's disease differently—not as a "long good-bye," as it's often called, but as a "long hello." Through caregiving, my challenging relationship with my mother was transformed, and I learned to enjoy and nurture her spirit through the last stages of dementia.

    Appendixes share facts about dementia that I wish I had known years ago, such as how to get a diagnosis of Alzheimer's disease; what medications are approved to lessen the symptoms of Alzheimer's disease; lesser-known risk factors for dementia; and possible antidotes. I include my favorite resources for caregivers, my source notes, and an index.

    Inside the Dementia Epidemic: A Daughter's Memoir is available in paperback and hardcover, as an e-book for Apple devices, the Nook, and Kindle, and on Kobo.

    Reviews and Testimonials

    Order the Book

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    PHOTOS:

    The photo at the very top of this page is of my mother, Judy, in 2010, smiling up at Suzanne, a massage therapist I hired who specializes in bodywork for elders.  Suzanne massaged her hands, arms, upper back and legs, talked to her, and played music for her.  [photo by Jason Kates van Staveren]

    Right: My mother at her 75th birthday party in 2007, three years after she could no longer live alone. A few days after this picture was taken she fell, fractured her pelvis and needed more care than her assisted living facility could provide. I had to quickly research alternatives.









    In 1996, Judy and her grandson, Andrew, age 1, on the shale beach outside the cottage on the lake in Upstate New York where she lived by herself for 25 years. It's his first visit, and she's showing him the "big lake water" and how to draw on the flat rocks with pencil-shaped pieces of shale. Her worrisome behavior starts around this time, but as her daughter I don't realize what is going on until much, much later.

    Above: My mother, age 74, and I at the cottage in 2006 with her old miniature Schnauzer, Trinka. I can see the stress of those early caregiving years in my face and in my extra weight. Little did I know how much I would learn over the coming years.

     

     

     

     

     

     

     

    Above: Judy, age 79, and me in early 2012 at the nursing home Judy moved into in 2010. Mom lived with advanced Alzheimer's disease and vascular dementia until she passed away in late 2012, but until the end she often shared her lovely smile. 

     

    Join the fight to stop Alzheimer's by 2020:

        

     

    For caregiver support and resources, visit the Caregiver Action Network. (Membership is free if you are a current family caregiver):

                        

        The Purple Angel--a symbol of hope and dementia awareness

    Thursday
    Aug042011

    Resources

    Fiction about Dementia or Caregiving

     

    I highly recommend the book Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (compiled and edited by Carol Levine, a leader in health care policy reform and current director of the United Hospital Fund's Families and Health Care Project. Vanderbilt University Press, 2014).

    As the publisher writes on its website, Living in the Land of Limbo shares "the emotional truths of family caregivers, who can say and do things in fiction that they might not dare to say or do in real life.

    "Living in the Land of Limbo is the first anthology of short stories and poems about family caregivers. These men and women find themselves in "limbo," as they struggle to take care of a family member or friend in the uncertain world of chronic illness. The authors explore caregivers' experiences as they deal with family conflicts, the complexities of the health care system, and the impact of their choices on their lives and the lives of others. The book includes selections devoted to caregivers of aging parents; husbands and wives; ill children; and relatives, lovers, and friends. A final section is devoted to paid caregivers and their clients. Among the conditions that form the background of the selections are dementia, HIV/AIDS, mental illness, multiple sclerosis, and pediatric cancer."

    For an excellent review of the book, see Jane Gross' piece on the NY Times' New Old Age blog.

     

    I also highly recommend the novel Still Alice, by Lisa Genova, Ph.D., a neuroscientist at Harvard University and an online columnist for the National Alzheimer's Association (2009).

    In this, her first book, Genova uses her scientific knowlege of dementia, and her considerable writing ability, to give us the haunting story of a woman diagnosed with early-stage Alzheimer's Disease at age fifty. The main character, Alice, a Harvard psychology professor,  plans ahead to commit suicide when her memory loss reaches a certain point.

     

    We watch each step in the loss of her memory, function and independence. She eventually loses awareness of her decline, and then her pact with herself.  Perhaps like many middle-aged readers of this book who have parents with dementia, I wondered with each decline in Alice's memory if I have similar symptoms. I wondered, for example, "Should I be worried if a particular word I'm trying to say escapes me?" If dementia runs in your family it can be a harrowing read.

     

    But the second half of the book is surprisingly uplifting. Still in the early stages of the disease, Alice gives the opening speech to a conference of professionals in dementia care. Reading carefully from what she's written so she won't lose her place, she tells them that "I am not what I say or what I do or what I remember. I am fundamentally more than that...I am not dying. I am someone living with Alzheimer's."

     

    That is what is revolutionary about this novel, and about the books I've listed in Changing Elder Care. We see a character here who is not a tragic burden, not just someone on the path to a long good-bye—as Alzheimer's disease has often been described—but a person who is still herself,  a person living with a disease.

     

    As her dementia worsens, Alice remains aware of what's going on around her. She continues to enjoy the simple pleasures of life, and feels the love radiating from her family.

     

    Still Alice has given me hope for meaningful visits with my own mother as she lives with advanced dementia.  And it inspires me to make sure that my mother is surrounded by those who will show her the same kind of love that Alice feels.


    Watch an interview with Lisa Genova about "Still Alice" being made into a movie.

     

    In the novel Turn of Mind, by Alice LaPlante, we experience the world from the perspective of a woman with dementia—much like Still Alice, above—but this woman's thoughts are darker, edgier, and the overall tone of the book is more unsettling. The woman is a retired hand surgeon, and her neighbor has just been killed, the fingers of one hand severed. Of course the police suspect the narrator, but her family and private aide try to protect her. It's a twisted stream-of-consciousness thriller that I couldn't put down.

    According to an interview with LaPlante by Bookreporter.com, her mother has Alzheimer's disease and her grandmother also had it. She's been writing about dementia for some time, but never as fiction (she's an award-winning writer, and this is her first novel). After reading this book I felt even more empathy for what my own mother might be thinking or feeling as visitors, including me, hug her and search for recognition in her eyes, and as the aides in her nursing home "take liberties" with her person, as the narrator says, lifting and tugging her to her bed, wheelchair, shower, and toilet.

    Overall, a great literary read for anyone, and a true exercise in empathy for those of us with family members or friends living with dementia.