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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 caregiving (16)

    Thursday
    Nov132014

    A Book Give-Away--and 3 Book Reviews--for Nat. Family Caregivers Month

    In honor of National Family Caregivers Month, here are three new books for caregivers that would make excellent holiday gifts. The first is a beautiful hardcover memoir in cartoon form that I’m giving away in a drawing.

    1. “Can’t We Talk About Something More Pleasant?” by Roz Chast

     

    2. “When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers,” by Mara Botonis,

     

    and 

    3. “On Pluto: Inside the Mind of Alzheimer’s,” by Greg O’Brien

     

    Check out my reviews of these books, and how you can enter a drawing to win a copy of "Can't We Talk About Something More Pleasant?" on caregivers.com here.

    Thursday
    Oct302014

    My 50th Birthday, and What Mom Taught Me

    Mom was so proud when I finally graduated from college at age 27Today is my 50th birthday, guys, and I'm thinking a lot about my mom, Judy, who passed away almost two years ago.

    Fifty years ago this morning Mom was playing the piano through the early stages of labor. She hoped that I would be a girl, as she wanted a daughter badly. In our living room at our piano she was most likely alone, as my father struggled with mental illness and was in his own world even if he was in the house, and my brother, 12 years older than me, was in school. Through the pain of labor my mother sought beauty and comfort in music. Years later, through her struggle with dementia she sought serenity and comfort in the company of other people--me, her grandchildren, her facility staff, and anyone else lucky enough to enjoy her beautiful smile and bright blue eyes. 

    If you've read my book you know that Mom was a recovering alcoholic in my teen years, and that we had a rocky relationship all our lives. It was only through caregiving that we truly grew close and became friends.

    Of course dementia caregiving is not all roses and sunsets, but those eight years at Mom's side taught me to appreciate simple moments of tenderness, the way her love for me--and mine for her--endured even if she couldn't remember or say my name. 

    This morning I made a list of all the things I'm grateful for as I hit the mid-century mark. Although Mom was a flawed, complex character (as am I), she taught me many lessons I will carry with me always. I write about many of those lessons in my book, but for now I just want to say Thank you, Mom, and I miss you so much today.

     

     

    Monday
    Oct202014

    Advice for Dementia Caregivers: My Podcasts on Lifestyle Improvement Radio 

    Download the podcasts below to listen to an interview about my book, "Inside the Dementia Epidemic: A Daughter's Memoir," with Lifestyle Improvement Radio. Rebeca, above, asked me lots of interesting questions about my eight-year journey caring for Mom, and recorded our discussion as two 30-minute podcasts. Here are the links and the topics we discuss:

    Part one:

    • How I got to the place where I accepted that my mother needed help and that I needed to provide that help
    • What it was like for my mother to live with me and my family, and why we decided that assisted living was the best option 
    • Overcoming the guilt I felt moving my mother into a facility
    • Some of the things that Mom taught me over my years of caring for her
    • How writing was a way to address the frustrations of caregiving and to heal some of those feelings

     Part two:

    • How caregiving affected my health
    • Some lesser-known risk factors for Alzheimer’s disease (such as sleep apnea and high blood sugar)
    • Why exercise is the best antidote for Alzheimer's (although there is no proven way to prevent the disease
    • Why I was a reluctant caregiver
    • How caregiving brought us closer and helped us overcome our challenging relationship as mother and daughter
    • Key advice I would give anyone who is just beginning to be a caregiver for a person with dementia

    I hope you have a chance to listen to these recordings and that you enjoy them. Feel free to leave a comment below.

    Have a great week!

     

    Friday
    Oct032014

    Best Books About Dementia and Caregiving

    photo from the blog "The Generation Above Me"Are you looking for recommendations for books about Alzheimer's, dementia or dementia caregiving? Karen D. Austin of the popular blog "The Generation Above Me" has posted a list of her favorite dementia-related books, with links to her longer reviews of those books. I'm honored to have "Inside the Dementia Epidemic: A Daughter's Memoir" included. Thank you, Karen. What a lovely surprise this evening!

    Karen writes:

    "Even though my approach to aging is pretty broad, I have a persistent interest in cognition. Not only do I read about healthy, normal, age-related changes to the brain, I also read about change caused by disease.

    "I am particularly interested in how dementia changes a person's cognition and how caregivers respond.

    "I have read more than a dozen books (novels, reference books, memoirs, etc.), and I hope to read many more.

    "Here are some quick reviews of some of these books with links to longer reviews. I plan on updating this page as I read more.

    "1. Dosa, David (2010). Making the Rounds with Oscar. The author describes residents of a skilled nursing center who are moving into late-stage dementia and how their loved ones are responding to the challenges."

    Read the rest of Karen's recommendations here.

     

    Wednesday
    Sep242014

    New "Evermind" Technology Can Help Supervise Elders Living Alone

    Mom and my son at her cottage around the time I began to worry about her living aloneI rarely review products on this blog (just dementia-related books), but I was approached by Evermind, a new company that makes an intriguing tool to help caregivers supervise the well-being of their loved ones who live alone. It's something that I wish had existed 10 years ago when Mom lived by herself in her isolated cottage on a lake. This simple piece of technology can help reassure you that your loved one is out of bed and going about their usual routine by monitoring their use of electrical appliances.  

    Here's how it works: A small, white Evermind box plugs into a wall outlet or power strip, with the appliance plugged into the box. Using built-in wireless Internet, Evermind alerts you if the appliances your loved one normally uses each day have not been turned on or off. Compatible appliances include microwave ovens, coffee makers, TVs, lamps, curling irons, CPAP machines, garage door openers and more. No home Internet connection is required.

    For more information, read my review on caregivers.com, or visit Evermind.us