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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

    Entries in Alzheimer's disease (1)

    Wednesday
    Sep282011

    More About "Inside the Dementia Epidemic: A Daughter's Memoir"


    On Wall Street Journal best seller
    list April 2015

    From the back cover:

    "A remarkable, brutally honest, and beautifully written account of what it's like to take on the role of caregiver for a loved one with dementia.”
                  —Mary Ellen Geist, author of "Measure of the Heart:
                         A Father’s Alzheimer’s, a Daughter’s Return"

    When her mother, Judy, plunges her car into a snow bank, Martha Stettinius herself is “snow blind” and innocent of the truth. More than an illness, dementia is a fast-growing epidemic. Martha’s dogged attempts to care for Judy soon make her an expert on this threat: 1 in 8 people over age 65 will have Alzheimer’s disease or another dementia, and nearly half of us over age 85.

    Martha guides us through assisted living, rehab, “memory care,” and a nursing home. Through skillful storytelling, she shares the bottom line that we all need to know: how to finance care, avoid pitfalls, sort out caregivers, evaluate a facility, and investigate more humane homes such as those in "The Eden Alternative” and “Green House Project.” She learns to overcome her challenging relationship with her mother, and reach the deepest core of Judy’s spirit.

    Martha supplements this mother-daughter love story with facts and appendices reflecting the cutting edge of dementia research. She refuses to surrender to hopelessness. As Martha has learned to sit in silence and hold her mother’s hand, she has also learned to speak up, research, and reach out to give us all new ways to win the war.

     

    The author writes:

    Becoming a caregiver for an elderly parent is a huge, emotional, and confusing life transition—a middle-age “coming-of-age” that most of us will face at some point. Caregiving is a job, and we cannot do the job alone. We can navigate this transition successfully if we have enough help and information, and I hope that my book will serve as both support and inspiration.

    “Inside the Dementia Epidemic: A Daughter's Memoir” is not a how-to book, but a story written like fiction in scenes and dialogue.  I know of no other memoir by an adult child caring for elderly parents that gives readers an inside look at so many kinds of care in so many settings: care at home, in assisted living, a hospital, a rehabilitation center, a "memory care" facility, and a nursing home.

    In addition, few books by adult children caring for a parent with dementia offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I experienced and felt with Mom was different, and I wanted to share our story.

    "Inside the Dementia Epidemic" is more than a memoir:

    Unlike other caregiving memoirs, I write about cutting-edge movements in elder care, such as The Eden Alternative®, Eden at Home®, and The Green House Project®.

    In 9 concise appendices, I include information about planning for long-term care, recent dementia research, and ways we might be able to prevent developing dementia ourselves.

    “Inside the Dementia Epidemic” is a call to action. We need

    • a radical shift in what’s called the “culture of elder care,” and
    • a substantial increase in federal funding for dementia research, dementia care, and support for family caregivers (beyond the Obama administration's minor increase in February of 2012).


    More about the story:

    As adults my mother and I always lived our own separate lives—Mom as a fiercely independent divorced woman, and me as a fiercely independent daughter who moved away from home at the age of 17 and supported herself in far-away cities. Mom and I had a way of butting heads, so I'd kept my distance.

    She first showed signs of vascular dementia from small strokes fifteen years ago, and most likely also has Alzheimer's Disease. (A definitive diagnosis of dementia can be elusive.) By the end of 2004 I could no longer deny that she was struggling, that something was deeply wrong. My husband and I invited her to move in with us and our two children in an intentional community.

    Over the next seven years, as her needs changed—and I realized my limitations—my mother lived in five different care settings. My book chronicles each transition, each challenge, each lesson I learned along the way, in the style of fiction, in scenes and dialogue.

    Despite the losses inflicted by dementia, my mother found moments each day to enjoy. I was often surprised by just how "here" she remained. She was still Judy, and still my mother.

    Years ago, when she was in a 12-step program for alcoholism, Mom used to tell me to "Watch for the people who smile when they see you coming." Though in her last three years she could barely speak, she still shared her brilliant smile, and her joyful appreciation of others never failed to lighten and inspire me.

    Buy the Book

    Read a sample of Inside the Dementia Epidemic:
    A Daughter's Memoir
    :

    Preface

    Ch. 1: "Judy" 
    Ch. 2: "The Decision"
    Ch. 20: "Slowing Down"
    Appendix B: "Medications Approved to Treat the Symptoms of Alzheimer's Disease"