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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 Genius of Marian (1)

    Thursday
    Sep182014

    Why You Should Watch "The Genius of Marian"

    Lately a lot of my Alzheimer activist friends have been talking about the documentary "The Genius of Marian." It's a "must-see" they say. Tonight I understand why. If you know anyone with Alzheimer's disease, I encourage you to click on this link to download the video. Pour yourself a glass of wine or a cup of hot chocolate, grab a box of tissues (or the arm of a loved one) and settle onto the couch for one of the most moving films I've seen in a while. "The Genius of Marian" is showing in select theaters across the country, but is also available to stream free via PBS through October 8th.

    Watch the trailer:

     

    And here is an excerpt of the description of the film from its website:

    "'The Genius of Marian" is an intimate and courageous portrait of filmmaker Banker White's 61-year-old mother, who is struggling with early-onset Alzheimer's disease. As importantly, it is a film in which paintings, home movies, photos and current footage come together to depict a family afflicted with Alzheimer's in two generations — and fighting to cope with loss while holding on to its collective memory.

    "Pam White, whose mother, Marian, died of Alzheimer's, is the center of this story and the family, even as the disease drains her memories and alters her personality. Yet, somehow, through all the comic and tragic incidents that mark the illness's inexorable progress, Pam, her husband and her kids, find something in themselves, as a family, that can't be taken away. Even late in the film, in a lucid moment, Pam says, 'This doesn't really change anything.'

    'The Genius of Marian' follows Pam's struggles, from early episodes of word fumbling that seem almost funny and attempts to hide 'memory issues,' to more serious states of confusion and distress, emotional outbursts and increasingly quarrelsome resistance to her care—and caregivers. Then comes helplessness in everyday tasks. Ed, to whom she's been married for 40 years, patiently bears the brunt of the care and his wife's frustrations. He manages by remembering 'the phenomenal life she’s given me.' In addition to Pam's eldest son, Banker, her son Luke and her daughter, Devon, and Devon’s own young family all pitch in to help Pam hold on to as much as she can for as long as she can.
     
    " 'The Genius of Marian' offers special insight into how, for Pam and her family, the struggle is not only to cope with the physical realities of Alzheimer's, but also not to let the disease psychologically overwhelm them. They know Alzheimer's ultimately will take Pam, but they won't let the disease define their memories of her or of the ways they have been blessed by her presence. White's film, like his mother's book, is about an amazing woman. She, too, cannot be forgotten.

     

    " 'I have been making documentary films for more than a decade, and each project has been deeply important to me in its own way,' says director Banker White. ''The Genius of Marian' is the most personal and challenging project I have ever undertaken. I approached this film both as a loving son and as a patient observer.

     

    " 'On the surface, the film is about my family's effort to come to terms with the changes Alzheimer's disease brings. But it is also a meditation on the meaning of family, the power of art and the beautiful and painful ways we cope with illness and loss. The last few years have been a roller coaster of emotions, filled with frustration, sadness, joy and celebration..."

    I found that Pam reminded me of my mother, Judy, left, when Mom was about age 76, four years before she died, when she could still talk but often could not find the right words, when she no longer read (she had always been a big reader), and needed more and more help with day-to-day activities like getting dressed and brushing her hair. Part of what is so poignant about "The Genius of Marian" is that Pam was so much younger than Mom when she reached that stage.

    The film also made me realize that for many families, Alzheimer's disease is truly "a long good-bye," as it's often called, and not, as it was for me and Mom, a "long hello." In this film you can see how Pam's loving family is losing her day by day, but for Mom and me caregiving was a chance for us to grow closer, to mend our challenging history together.

    It has now been two years since my book came out, and I realize that the experience of the family in "The Genius of Marian" may be more typical than my own experience--especially for families affected by young-onset Alzheimer's disease (before age 65). I still believe that many moments of joy can remain, but I understand better now the devastation of this disease. Yes, the person remains "in there" to some extent, and you can connect with them as the family in this film tries to do, but watching the gradual loss over years and years of the person's talents and vitality takes a dreadful toll on everyone around them. 

    Again, you may download the entire documentary here until October 8th, order the DVD, or watch it in select theaters. It's a stunning work of art. Enjoy.