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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

      Inside Dementia

       Welcome to my blog about dementia
       caregiving as a "long hello," not a
      "long good-bye" —how we can become
      "care partners" with our family members
       or friends who are living with dementia, and how we can care for ourselves. Living with Alzheimer's disease or another dementia is a long, hard road, full of grief, anger and despair, but life continues after a diagnosis, and so can moments of joy.

    Read more about my book, "Inside the Dementia Epidemic: A Daughter's Memoir," or order the book.

    To sign up for an RSS feed or emails of this blog, scroll down and look to the right.

                                      —Martha Stettinius 

    Entries in women (2)

    Thursday
    May152014

    Why Women Need Public Long-Term Care Insurance--an OWL Report

    Mom at age 77, in her memory care facilityWomen continue to live longer than men, are the primary consumers of long-term care, and as family caregivers provide more hands-on care (such as feeding, showering, and toileting) than men. Many men are hands-on caregivers, of course, but long-term care remains a major issue for women.

    A new Mother’s Day report from OWL (the Older Women’s League) explains why U.S. women need a public long-term care insurance program similar to those of other nations.

    My mother, Judy, who passed away a year ago with Alzheimer’s disease at age 80, did not have long-term care insurance. Instead, as a divorced elementary school teacher raising me on her own, she tracked her living expenses on color-coded spreadsheets, and pinched every penny her whole life. After investing in some mutual funds, she retired with a modest pension and about $150,000 in savings—all hard-won. Unfortunately, six years of long-term care wiped out her savings—and she needed two additional years of care.

    In my post this week for caregivers.com I take a look at OWL's report, and consider how the last years of my mother’s life (and my own as her caregiver) might have been less stressful and financially ruinous if she had had private LTC insurance or access to the kind of public LTC insurance many nations offer. 

    Read the post here.

    Wednesday
    Mar192014

    Women are at the Epicenter of the Dementia Epidemic

    Mom and me about 10 years before her symptoms of dementia beganDid you know that 65% of all people with Alzheimer's disease are women? That 60% of Alzheimer's caregivers are women? That a woman age 65 or older has a 1 in 6 chance of developing Alzheimer's disease, compared to 1 in 11 for a man? 

    I have been thinking of writing a second book (expanding on the information in my first book's appendices) tentatively entitled "A Woman's Guide to Lowering Your Risk of Alzheimer's Disease," because as women we learn about our risk factors in a piecemeal fashion--a little here and there, and we often hear nothing about the less well-known risk factors, such as having sleep apnea or insulin resistance. We're also so busy taking care of others that we let our own health slide. 

    Today the Alzheimer's Association released its 2014 Facts and Figures Report, which includes some statistics on women and Alzheimer's that I hadn't seen before. For a summary of that information, and a cool 1.5-minute video, check out their webpage

    For now, a second book will have to wait, but I hope to share more information in this blog about the particular risk factors for women, and the steps we can take to reduce our risk, particularly if we have a family history of Alzheimer's disease or another dementia.

    To read more about women and Alzheimer's, you can purchase a report by Maria Shriver and the Alzheimer's Association called "The Shriver Report: A Woman's Nation Takes on Alzheimer's" ($9.46).