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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 reimbursement (1)

    Wednesday
    Oct152014

    Will Your Doctor Be Reimbursed for End-of-Life Planning?

    If you are caring for someone who has early-stage dementia, it's a good idea to sit down with them and their doctor to talk about their wishes for the end of their life. I know it's hard, but the earlier you can do this, the better. And if your loved one is living with more advanced dementia, it's equally as important that you meet with their doctor on your own to discuss end-of-life planning. Such discussions are extremely important not only for your loved one but for your own well-being in the future when you may face heartrending decisions about their care. 

    Research shows that family caregivers who have a chance to talk to their loved one's doctor about advance care planning feel less guilt after their decisions as caregivers after their loved one dies. But many of us don't even know if our insurance covers end-of-life discussions. And doctors often do not initiate these conversations. It's usually up to us as caregivers to ask if such disucssions are covered and to schedule them. 

    Unbelievably, Medicare does not currently reimburse doctors for these kinds of discussions, which partly explains why many doctors do not take the time to talk to family caregivers about advance care planning. Such coverage was dropped from the Affordable Care Act five years ago because of an unfounded fear of "death panels." There is hope, however; the Centers for Medicare and Medicaid Services is expected to make a decision by November about whether or not to reimburse doctors for end-of-life discussions. 

    In my post this week for cargivers.com I describe 

    • what end-of-life discussions may include;
    • some info about MOLST/POLST forms and how they can help with advance care planning;
    • where we stand as a nation with insurance coverage for advance care planning; and  
    • how you can support pending legislation in the House of Representatives that would mandate such coverage by Medicare and Medicaid.

    I also share my own discussion with my mother's doctor about her end-of-life care.

    Read "Are End-of-Life Discussions Covered by Your Medical Insurance?" here.