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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 

    Friday
    Apr012016

    17 New Alzheimer's Drugs in the Pipeline!

    My mother, Judy, and me in her nursing home. Perhaps one of these 17 Alzheimer's drugs in trial now will help prevent or treat future cases of Alzheimer's diseaseGreat news! Today ResearchersAgainstAlzheimer’s published an exciting new report that concludes that 17 drugs in current phase-3 clinical trials may launch in the next 5 years. This unprecedented advance in Alzheimer’s research follows more than a decade of negative drug trials and poor funding for Alzheimer's research, and it certainly provides much-needed hope for people living with Alzheimer's disease, their care partners, and those at risk of developing the disease.

    UsAgainstAlzheimer's co-founder George Vradenburg notes that "our mission is to stop Alzheimer's by 2020. Our work has focused on disrupting business as usual by increasing research resources, speeding drug development, and assuring access of innovative medicines to those with or at risk of the disease. Should drugs in late-stage development prove successful, insurers and physicians will need to step up their game."

    To learn more, visit UsAgainstAlzheimer's. 

    Thursday
    Mar102016

    A Village Just for People with Dementia!

    The video below by CNN describes a special village in the Netherlands designed for people living with severe dementia. It's 24 minutes long but very moving and well worth watching. (If you already know a lot about dementia you can skip the last third.)

    I sure wish my mother, Judy, had had such a place to live in--where she could move freely around a neighborhood that looks like a real neighborhood, shop in grocery stores  on her own or with a caregiver (no prices, no money!), get her hair cut in a "real" beauty shop, and be surrounded by staff who are trained to communicate with a person with a cognitive impairment. In the past three years since my mother died, I have heard about these villages, but I had never seen a video. I'm happy today to share this one with you.

    Such alternatives to traditional assisted living and nursing home care are the future of dementia care--and elder care in general. How could this kind of village become a reality in your town, your city, your neighborhood? Let's think big!

    Martha

     

     

    Saturday
    May022015

    Wall Street Journal Best Seller

    Mom and me shortly before she needed a memory care facilityI would like to dedicate some exciting news today to the memory of my mother, Judy, who died 2 years ago with advanced dementia. My book, "Inside the Dementia Epidemic: A Daughter's Memoir," is now listed as a Wall Street Journal best seller (e-books, nonfiction)!

    Since the best seller list goes out through the Associated Press, it should appear in papers across the country (I saw it in my local paper today!). Mom would be so happy to know that her story may help more people caring for an aging parent or a loved one with Alzheimer's disease or another dementia. She believed in the power of books. And she believed in me. Though we often had a rocky relationship as mother and daughter, she was always my most stalwart cheerleader. Thank you, Mom. This honor is for you.

    Friday
    Apr242015

    "Inside the Dementia Epidemic" Now a Kindle Best Seller!

    My book, "Inside the Dementia Epidemic: A Daughter's Memoir," is now a Kindle BEST SELLER, ranked #12 for all Kindle sales and #1 in Eldercare, Alzheimer's, and Aging Parents!

    If you have a loved one with Alzheimer's disease or another dementia, are caring for an aging parent, or just love a good mother-daughter memoir, check out the Kindle book. The e-book is also available for the Nook, and on Kobo and iTunes, and the paperback is available through Amazon, Barnes and Noble, and many other online retailers in 10 countries. You can also ask your library or bookstore to order it from Ingram.

    Many thanks to all of my book fans! My mom would be thrilled.


    Tuesday
    Jan202015

    Fear of Dementia Leads Some to Ponder Severe Advance Directives

    Spoon-feeding Mom blueberry pie in her nursing homeWould my mother, Judy, who died two years ago with advanced dementia, have wanted me to deny her food and liquid when she reached a certain stage of dementia? Would she have thought that her life was no longer worth living? Paula Span of the New York Times' New Old Age blog today explores the idea that people who fear developing Alzheimer's disease or another dementia should be able to create advance directives for when they are no longer able to make decisions for themselves--directives that would instruct their caregivers to withhold food and water when the person reaches a certain level of disability--say, when they no longer recognize their loved ones, or they cannot feed themselves.

    The last two years of my mother's life, I wasn't sure she knew I was her daughter. She could not speak more than an occasional "yes" or "no." She could not walk, or feed herself. She wore Depends. But her smile was stunning; she loved people. And I could tell that she loved me. She seemed to know that I was someone very special to her. If my mother had written an advance directive about withholding nourishment when her quality of life declined to a certain level, how could I have honored her wishes? Quality of life is slippery. What would never suffice one day, one year, is more than enough the next. And even a person living with advanced dementia is still "in there" sometimes, in some moments. A person with dementia can still enjoy simple pleasures--and even share affection with loved ones. Yes, they are no longer the competent person they once were, but does that mean they would really want to leave the earth, to be denied sustenance?

    In some ways it's cruel to ask a loved one to decide when and if you would want nourishment withheld. All we can do is look in your eyes and hold your hand. And if you are hungry, feed you.

    I would be interested to learn in the future if anyone of sound mind succeeds in ending their life on their own terms once they develop advanced dementia. If one can die well by getting one's nourishment withheld, and it does not traumatize one's loved ones, I'm all for it. Certainly no one wants to be bed-ridden and catatonic in the very last stage of Alzheimer's disease. But the danger, I believe, is that people overlook the fact that people in earlier stages of dementia--even when one cannot speak or feed oneself--are very much alive and capable of enjoying the moment.

    I encourage you to read this thought-provoking article in the Times: Complexities of Choosing an End Game for Dementia