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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

    Saturday
    Jan042014

    Another Book Review! : "Love in the Land of Dementia"

    If you have dementia, or are caring for a family member or friend with dementia, there's a new memoir that I'm really excited about--a short, sweet read that will leave you feeling hopeful and inspired.

    I believe that “Love in the Land of Dementia” by Deborah Shouse is truly one of the best memoirs out there by an adult child caring for a parent with dementia. Not only is Shouse a talented writer, but she shows us in simple but beautifully-wrought scenes how she came to discover small ways each day to enjoy her mother’s company despite her mother’s advancing dementia.

    While her perspective is uplifting, Shouse doesn’t shy away from describing the more difficult moments of dementia caregiving, such as the guilt, despair, anger, and grief we often experience, and the challenges we face dealing with the elder care system.  She includes scenes in her mother’s assisted living facility and nursing home dementia ward, and with her mother’s hospice team, that many family caregivers, and elder care professionals, will find illuminating. 

    Her book is an easy read, full of insight, honesty, compassion, and humor. But what makes it unusual in “caregiver lit” is that it helps us see people with advanced dementia not as “dementia patients” or as “shadows of their former selves,” but as persons with a full range of emotions and needs and the ability to share love. 

    Shouse writes, “I would never have guessed that I could sit on the edge of a hospital bed with a noncommunicative woman and still feel the warmth of connection…She is not ‘herself’; she is not the mother I have known and the wife Dad loved. But despite all the loses, she is still someone well worth being around….When all the ordinary things are gone, the spirit can still remain.”

    Shouse's writing has appeared in The Washington Post, The Christian Science Monitor, Reader's Digest, Newsweek, Woman's Day, Hemispheres, Family Circle, Spirituality & Health, Chicago Tribune, and MS. She writes a weekly column on love stories for the Kansas City Star, and coauthored Working Woman's Communications Survival Guide, which is now in its fifth printing, and Antiquing for Dummies. She has written several memoirs and business books and has been featured in more than a dozen Chicken Soup books.

    Learn more about Deborah Shouse and her book "Love in the Land of Dementia" here.

     

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