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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 

    Tuesday
    Dec092014

    Podcast: Are We Prepared for the Growing Need for Elder Care?

    Dr. Karl Pillemer, me, host Catherine Roper, and Dr. Bill Thomas at NPR elder care panel discussionHow can we as communities, families and individuals do a better job planning for the aging process and the needs of our growing elder population? 

    I feel very honored to have been invited to participate in an NPR panel discussion on elder care issues with Dr. Bill Thomas, Dr. Karl Pillemer and host Catherine Roper of radio station WRVO, which was broadcast in late November 2014. In a post today for ChangingAging.org I summarize our discussion, including the questions we were asked by the live audience in Upstate New York.

    The podcast is well worth listening to, I believe, because of the sheer range of topics that we touch upon and my fellow panelists’ innovative ideas about aging well not “in place” but "in community.”

    The topics we talk about, which are too numerous to list in their entirety, include: 

    • What should you consider before moving a parent into your home?
    • Is it worth the cost to hire a geriatric care manager to assess your family’s situation and design a care plan that meets your specific needs?
    • What kinds of free support are available for family caregivers?
    • How can we encourage family caregivers to see themselves not just as family members or friends but as caregivers who need and deserve information and support?
    • Why do communities need government and volunteer support of transportation services in rural areas, and alternatives to having elders drive from rural areas to far-away cities to consult with specialists?
    • As you age and your friends move away or die, why is it important to keep adding new people to your “funnel” of friendship?
    • How can new technology help caregivers find support or monitor a loved one who lives far away?
    • How is caring for an aging spouse or partner different than caring for an aging parent, and why do spousal caregivers often receive much less help in the home than other types of caregivers?

     Read more, or listen to the podcast, here.

    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
    Nov062014

    The Shadow Box Memory Project for Alzheimer's Awareness: A Survey

    My “shadow box” (a 12 in. by 12 in. recessed frame for pictures and memorabilia) honoring my mother, Judy, who lived with Alzheimer’s diseaseDo you know what Alzheimer's disease lacks in the United States? A national campaign like the AIDS Memorial Quilt Project: a sea of images that would evoke the true personal and collective cost of Alzheimer's disease.

     

     

     


    The newly-formed WomenAgainstAlzheimer’s Network would like to launch just such a national awareness campaign. They call it the "Shadow Box Memory Project," but so far it's limited to a few leaders in Alzheimer's advocacy. Should WomenAgainstAlzheimer's expand the project nationwide? That's the question--and you can help them decide. Take their 2-minute survey here to help them gauge interest in the Shadow Box Memory Project.

    Shadow boxes are 12 in. by 12 in. recessed frames that hold photos and memorabilia honoring a loved one. Imagine thousands of such boxes side by side, row upon row--like a giant quilt. Imagine the effect of such a display on those in power, our representatives who have been in denial about the dementia epidemic and the need for a massive increase in Alzheimer's research funding. And the effect on those without much power, those of us who may feel alone in our struggles with dementia or caregiving.

    Here's the survey link again:  https://www.surveymonkey.com/s/GLLXNHK

    Thank you!


    Tuesday
    Nov042014

    One Woman's Fight to Transform Alzheimer's Care

    Judy BerryI'm thrilled today to share with you a pdf of an article that is not available anywhere else on the Internet--an article from this month's MORE Magazine which I scanned today at Kinko's just so I could share it with you. (I hope I don't get in trouble for sharing it. But I'm so excited, I'll take that risk.) It's an article about Judy Berry, the founder of the Lakeview Ranch model of dementia care. 

    Twenty years ago, Berry's mother had Alzheimer's disease and was so aggressive in her behavior that she was kicked out of numerous elder care facilities. Berry searched tirelessly for a loving facility for her mother where she would get the care she needed. Unfortunately, her mother died never having received the quality dementia care she deserved.

    It was a tragic period that moved Berry to start her own home in Minnesota for people living with dementia whose behavior made it challenging to find appropriate care in other facilities. She learned everything she could about dementia, then used her savings to start a home called the Lakeview Ranch. After a while she was able to open a second home. Scholarships are available through donors to help residents with lower incomes and those on Medicaid.

    For many years now, Judy Berry and her Lakeview Ranch have exemplied the very best in person-centered dementia care--care that can be replicated in any setting.

    Here's the article:  "What She Couldn't Do for Her Mother," by Julie Halpert

    And here's more about Judy Berry in my debut blog post.

    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.