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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 

    Monday
    Nov122012

    Short Radio Interview: Advocating for Your Loved One in a Facility; Challenging the Stereotypes of Alzheimer's Disease

    This past Saturday I was interviewed on the radio show "Journey Through Aging" with Joel Wrobbel, the Marketing Director at Westminster-Thurber Community in Columbus, Ohio, and an Eden Alternative Associate. We're both passionate about culture change in elder care, and we talked about a number of topics in 2 very short segments:

    Part I (12 min.): How to Advocate for Your Loved One in a Facility; Lessons I learned about transitions in care; and How "Inside the Dementia Epidemic: A Daughter's Memoir" is different from other caregiving memoirs

    Part II (9 min.):  Seeing Alzheimer's differently, not as a "Long good-bye" but  as a "Long Hello"; Challenging the stigma of dementia; Key advice for new caregivers

    Click on the links above to listen to the mp3 recordings. 

    Friday
    Nov092012

    Overcoming the Stigma of Dementia; and Alzheimer's as a "Long Hello"

    This past week I was fortunate to be interviewed by Lori La Bey of Alzheimer's Speaks Radio, who was just named "Number 1 Online Influencer in Alzheimer's Disease" by ShareCareNow (Congratulations, Lori!). We talked about

    • How we can overcome the stigma and stereotypes of dementia; 
    • Why I learned to see Alzheimer's differently, not as a "long good-bye" but as a "long hello";
    • How, as women, we often feel like we should be "superwomen" and take on all the tasks of caregiving ourselves while balancing children, marriage, and work
    • How a "care partnership" is different than "caregiving," and why it's important; and
    • What a "care circle" is and how we can build networks to both support us as caregivers and to share caregiving tasks with family, friends, and neighbors

    Listen to the interview here (mp3).

    Thursday
    Oct252012

    My Debut Blog Post: An Inspiring Model of Dementia Care at Lakeview Ranch

    Today I'd like to share with you a video about the kind of place I wish my mother, Judy, could have lived in these past 7 years that I've been her caregiver. My mother is 80, living in a nursing home with advanced dementia (vascular and probable Alzheimer's disease). Since she first moved into my home with me, my husband and 2 children in 2005, she's also lived in a conventional assisted living facility that had no real support for people with dementia, then a rehab center when she fractured her pelvis, where she was pretty much left on her own between her physical therapy sessions. She then lived in a private-pay "memory care" facility where she enjoyed 2 1/2 years of specialized dementia care and lovely, attentive staff, until she ran out of money and needed more care than they could provide.

    This video is about a home in Minnesota for people with dementia called Lakeview Ranch, started by Judy Berry, left, a woman whose mother had dementia years ago and was bounced from facility to facility because of her "aggressive" behavior. Judy invested her savings into a home where people with middle- and end-stage dementia could continue to enjoy life each day despite the ravages of the disease, a place where the staff would know how to communicate with the residents and treat them as fully human, not "shells" of their former selves. Now she has two homes with 85 staff trained to provide person-centered dementia care.

    But how do people afford this kind of care? Judy did not want to limit her vision of dementia care only to people with lots of savings, so she started the Dementia Care Foundation, a MN non-profit 501c3 to provide scholarship funding.

    My mother lived in a memory care facility similar to the Lakeview Ranch model, but it was not nearly as lively or full of joy. The staff at the Lakeview Ranch seem much happier, too. Lakeview Ranch takes dementia care to a whole new level.

    The video gets off to a slow start for the first minute or so, with a rather ominous-sounding narrator, but hang in there, because it's truly inspiring. Here's the link:

    http://www.youtube.com/watch?v=sQGaEceKXng&list=UU_4MvaAKoD-FSnSV0BxRa3Q&index=3&feature=plcp

    Please post your comments or questions below.  Thank you!

    Martha Stettinius

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