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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

    ______________________________________________________

    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

    Monday
    Dec092013

    Book Review: "Leaving Tinkertown"

    I just finished a memoir that I highly recommend for anyone who has a loved one living with Alzheimer's disease or another dementia. Beautifully written, and devastating in its detail, “Leaving Tinkertown,” by Tanya Ward Goodman, is both a first-rate father-daughter love story and a testament to the particular heartbreak that is early-onset Alzheimer’s disease.

    Although Tanya describes her father as disappearing before her eyes--and I usually don't recommend books that depict people with dementia as "gone" and no longer themselves--I think that this memoir reflects a truth of early-onset Alzheimer's disease:  that it can be much more devastating in its brutality and swiftness than, perhaps, late-onset Alzheimer's.

    Tanya's father, Ross, is an eccentric but gentle and nurturing man who made his living in the West as a painter for carnivals. Over the years Ross built a 22-room museum of miniature wooden scenes and figurines—Tinkertown—by adding rooms one by one to their farmhouse in New Mexico, building the walls from glass bottles and cement. Tanya grows up sharing her home with visitors from across the country. When her father is diagnosed at age 58 with Alzheimer’s disease, Tanya is barely scraping by in her late 20s in Los Angeles, but doesn’t hesitate to come home, leaving her sweetheart behind, to help out her father, who grows increasingly testy and stubborn, and her high-octane but emotionally-removed step-mother.

    The author of "Leaving Tinkertown," Tanya Ward Goodman, with her father, Ross

    In “Leaving Tinkertown” Tanya artfully weaves scenes from her childhood with those from the present, showing us how she continues to adore her father but struggles with the fears we so often have as caregivers—that she’ll forget who she is and what she wants for herself, or be overcome by sadness. She is angry that with his dementia her father “is leaving,” and angry that she is “being left.”  Over time, Tanya learns not only how to find her place as an adult in this strange and unpredictable household, overcoming attacks of anxiety and self doubt, but how to find her strength as a daughter and caregiver.

    As a reader, I came to feel a great fondness for both her and her father, so it was difficult to witness his rapid descent into early-onset Alzheimer’s. As the daughter of a woman who suffered from dementia for over 10 years, but declined more slowly than Ross and passed away at 80, not in middle-age, I felt immense sorrow for Tanya that she lost her father so young. Fortunately, her story is beautifully wrought; with exquisite detail, honesty and humor, Tanya guides us gently from moment to moment, in much the same way she learns to guide her father through the movements of his day. I highly recommend this book for any reader, not just those who have a loved one with dementia. Ross, Tanya, and the special place that is Tinkertown will stay with you long after you finish the last page.

    Watch the book trailer

     

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