Search:


Connect with me on:

 

 

Subscribe to my blog posts:

This form does not yet contain any fields.

      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

    Resources


    Recommended Blogs and Videos for Alzheimer's/Dementia Caregivers


    Below are some of my favorite blogs and videos for people who are living with Alzheimer's disease or another dementia, and their care partners. (My own blog is Inside Dementia.) If you'd like to recommend a blog or video, please contact me.

    Blogs


    Alzheimer's Association blog

    Alzheimers.net blog
     

    Alzheimer's Reading Room

    Alzheimer's Speaks

    Alzjourney.com

    AlzLive.com

    By 2020: USAgainstAlzheimer's blog

    Caregivers.com (I write for them weekly, often about dementia caregiving)

    ChangingAging (about changing the culture of elder care, not just dementia, but excellent)

    Commonsense Caregiving (by author of "Staying Afloat in a Sea of Forgetfulness")

    Deborah Shouse Writes (Author of "Finding Love in the Land of Dementia")

    Dementia Mentors (started in May 2014 by people with dementia for people with dementia)

    D4Dementia

    Fisher Center for Alzheimer's Research Foundation blog

    Geriatric Care Management 

    Living with Alzheimer's

    Maria Shriver's blog

    Minding Our Elders (by Carol Bradley Bursack, author of book of same name)

    Missing Jim:  Confessions of an ALZ Wife (Early-onset Alzheimer's)

    My Alzheimer's Story:  The Joys and Sorrows of an Amazing Journey

    My Mom, My Hero (author of book of the same name)

    One Brave Cowgirl

    Porkchops and Pianos:  A Dementia Blog

    Richard Taylor's blog (author of "Alzheimer's From the Inside Out")

    The Art of Alzheimer's: How Mother Forgot Nearly Everything and Began to Paint

    The Generation Above Me (About much more than dementia and elder care, but highly recommended)

    Watching the Lights Go Out


    Videos


    "Famous Faces of Alzheimer's 2014," created by Toni Wombaker, care partner for her mother

    "Person-Centered Matters," 2014, a beautiful and compelling 16-minute video produced by the Dementia Action Alliance and filmed by a former National Geographic filmmaker. It portrays five people living with dementia and how person-centered care helps them live more fully.

    "Alzheimer's: An Urgent Epidemic,"
     by David Shenk, 2014.

    The trailer for "Alive Inside," the 2014 Sundance Film Festival Audience Award winner, a documentary about the power of individualized playlists on iPods (music from a person's childhood and teen years) to reach people with advanced dementia who seem to have lost their ability to speak. See also:

    Interview with Filmmaker Michael Rossato-Bennett on his documentary "Alive Inside" (see above). Very moving!

    "Alzheimer's Disease Facts and Figures 2014" (from the Alzheimer's Association)

    "The 7 Stages of Alzheimer's Disease Through a Caregiver's Eyes" and "Our Reality of Alzheimer's 2012" (Toni Wombaker's 2 videos about her mother's progression through the stages of Alzheimer's disease, and the lessons Toni learned as a caregiver--very moving and informative)

    Interview with Lisa Genova, author of novel "Still Alice," about how her book shows that you can still connect with a person with advanced dementia, that we are more than memory. "Still Alice" is being made into a move.