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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

    Main
    Wednesday
    Feb152012

    Sample: Ch. 1: "Judy"

    A minor car mishap signals the end of what had been my former relationship with my mother, and the beginning of my major involvement in her care.

    It is a February day in 2005, crisp after a fresh snow. I am following my mother’s car from her cottage on a lake to her doctor’s office in the small town nearby. I hadn’t planned to follow my mother for safety reasons, only as a routine need to have two cars for our separate plans later in the day.

    Although she’s driven through this town for twenty-five years, Mom loses her way and misses the block by the doctor’s office. When she finally pulls over to the side of the road, her car starts to slip into a ditch.

    This isn’t the first time I’ve seen my mother do this. When I was fourteen, my mother and I had been at the cottage alone one weekend, and she had been drinking as usual. As we headed back to our house two hours away, Mom turned twenty feet too early at the main road and drove the car five feet down into a ditch. She had to call a tow truck and explain to strangers how, on a clear, sunny evening, she ended up in the ditch.

    But on this snowy day, instead of reversing or summoning help, my mother continues to accelerate forward until she is wedged downward at so steep an angle that the front end of her Honda Accord is buried in the snow and the rear end of the car sticks up three feet in the air. I pull my mother from the driver’s seat and call another tow truck. 

    This drama symbolized the facts: At seventy-two, my mother was beginning to fall into a great white opacity. It was up to me to save her. What would have happened to her if I had not followed her car? The image of my mother—trapped, pointed downward into nothingness—haunts me, still.

     

    Judy is not just a thin, white-haired woman whose sky-blue eyes are eerily bright. Judy is a complicated, unusual person in her own right. Thirty years ago, twice divorced, Mom sold our home as soon as I left for college and moved to our family’s vacation house—a two-story cottage on Silver Lake in rural New York. Then forty-nine years old, she cut her ties with ordinary life—her teaching job, commuting, and suburban settings. Without the usual obligations, my mother entered the world of her weekends and summer holidays. Judy set herself free, in a way many people wish to do, but few dare.

    Now, whenever I have to move my mother from one facility to the next, following the stages of her deterioration, I carry the framed photograph that, in my mind, shows the "real Judy"— Judy at her best.

    In this picture, you see a vital fifty-four-year-old woman, brunette, tanned brown, in a light-blue canoe, her dog beside her. This was the year of my mother’s great solo expedition around her beloved Silver Lake, thirty-three miles on each side. She carried a tent, sleeping bag, dried food, water, a Bunsen burner, a journal, and her miniature Schnauzer.

    Her plan was to interview the lake people, camp on the shores, and collect an oral history for a comprehensive chronicle of the mysterious, six-hundred-foot-deep lake famous for its "Guns of Silver," the underwater booms that echo like explosions through the valleys and vineyards. The source of the thunder may be natural gas escaping from pockets in the bedrock beneath the lake. (That legend may now be a liability. Even as I write, there are news reports that my mother’s beloved lake is threatened by the prospect of gas drilling along its shores that would destroy the ecological balance. As Judy is endangered, so is the place she loved.)

    The twenty-five years my mother spent living alone in that remote lake house represented the most successful, idiosyncratic stretch in her life. Mom called herself "Woodswoman," inspired by Anne LaBastille’s book about living alone in the Adirondack Mountains. Mom took pride in chopping and stacking her own wood for the fireplace, and loved to be outside whenever she could, working in the yard. She enjoyed the quiet off-season when she had the expanse of lake nearly all to herself. She said, "a life lived indoors is no life at all."


    Judy planned to live the rest of her life at the cottage. She loved the early morning sun rising wide and roseate over cliffs on the opposite shore, the waves changing direction without warning from north to south and south to north. Because of its depth, and its constant turning over from bottom to top, the lake freezes only once in a hundred years. From her desk facing the picture windows, Mom could see the winter waves fifty feet away crash fierce and white-tipped into the railroad-tie breakwall .

    It is one of the cruel ironies of dementia that this very beautiful, natural lifestyle, which gave her such pleasure, may have hastened my mother’s decline. As you will see in the appendices, new findings indicate that the brain must be stimulated; we must continually challenge our minds to learn new skills, and to participate in a variety of social and cultural events. Not only was Mom’s solitary life dangerous, but her deterioration was well advanced before anyone knew.

     

    Mom first showed signs of vascular dementia (also called "multi-infarct dementia") from small strokes at age sixty-five. She is now, at age seventy-nine in 2012, in the last stage of "mixed dementia"—in her case, most likely a combination of Alzheimer’s disease and vascular dementia.

    I became my mother’s sole family caregiver at the age of forty, a job I never expected, and at first resisted. Because of our complex history together, I denied as long as I could that she needed help. My relationship with my mother had gone through its own stages and upheavals. Through the years I have been angry with her, estranged from her, and devoted to her.

    The day after she drove herself into that first ditch, my mother put herself into treatment for alcoholism. For the rest of her life, she stayed sober but continued to struggle with depression, anxiety, and obsessive-compulsive personality disorder. I left home at sixteen, and, for many years, had a long-distance relationship with her. Visits were strained. (I remember the dramas—the night I fled, pregnant, with my stunned, young husband, when my mother ordered us to leave the cottage into a cold, black rain.) In different periods in our lives, we tried to overcome the tensions between us, aided by counseling and 12-step programs, but I kept my distance.

    Then, the slide into the snow ditch, and everything changed. I slid as well, blind and ignorant, into the dementia epidemic. I had no reason to know about the intricacies of the different settings for dementia care, let alone how to pay for them. As a matter of fact, I began writing this book because I felt guilty about each decision I had made on my mother’s behalf. I needed to figure out if my choices were sound or selfish. I knew no one else at age forty balancing the care of children and a parent, and feared that, with caregiving on top of work and family, I would lose myself. I also questioned the idea, so prevalent today, that to "age in place," to receive care at home, is inherently better for elders than care in a facility.    

    I would learn that, for many of us, becoming a caregiver for one’s parent is a midlife coming-of-age. I now emerge from the upheaval of this transition more confident, willing to ask for help, attuned to my own needs, and appreciative of the simple gifts of life.

     

    Read Ch. 2: "The Decision"

    Read Ch. 20:  "Slowing Down"

    Read Appendix F: "Sweet Poison: The Toxic Tide of Sugar"

     

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