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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 dementia (26)

    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.

    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

    Thursday
    Oct302014

    My 50th Birthday, and What Mom Taught Me

    Mom was so proud when I finally graduated from college at age 27Today is my 50th birthday, guys, and I'm thinking a lot about my mom, Judy, who passed away almost two years ago.

    Fifty years ago this morning Mom was playing the piano through the early stages of labor. She hoped that I would be a girl, as she wanted a daughter badly. In our living room at our piano she was most likely alone, as my father struggled with mental illness and was in his own world even if he was in the house, and my brother, 12 years older than me, was in school. Through the pain of labor my mother sought beauty and comfort in music. Years later, through her struggle with dementia she sought serenity and comfort in the company of other people--me, her grandchildren, her facility staff, and anyone else lucky enough to enjoy her beautiful smile and bright blue eyes. 

    If you've read my book you know that Mom was a recovering alcoholic in my teen years, and that we had a rocky relationship all our lives. It was only through caregiving that we truly grew close and became friends.

    Of course dementia caregiving is not all roses and sunsets, but those eight years at Mom's side taught me to appreciate simple moments of tenderness, the way her love for me--and mine for her--endured even if she couldn't remember or say my name. 

    This morning I made a list of all the things I'm grateful for as I hit the mid-century mark. Although Mom was a flawed, complex character (as am I), she taught me many lessons I will carry with me always. I write about many of those lessons in my book, but for now I just want to say Thank you, Mom, and I miss you so much today.

     

     

    Wednesday
    Oct222014

    Diagnosing Depression in a Person Living with Dementia

    Mom and me shortly after she moved from my home into assisted living. She showed many signs of depression in the early stages of dementia.Can elders with Alzheimer's disease or another dementia also have depression at the same time?

    And how do you diagnose depression in a person with dementia when the symptoms are often quite similar?

    As a consultant for eCareDiary.com, I've written a post to guide care partners through these questions.

    Can Seniors with Dementia Suffer From Depression Simultaneously?

     

    Yes, it's very common for a person living with Alzheimer’s disease or another type of dementia to also experience depression. Thirty to 50 percent of people living with dementia also have depression. 

    When my mother, Judy, lived with the early stages of dementia and moved in with me and my family, she felt very depressed. While grateful at first for our help, she soon retreated to her room and often refused to come out for meals. She had no interest in getting to know the neighbors who invited her to join them for dinner and concerts. While my husband and I and our children were out of the house all day, Mom grew more and more unhappy.

    Read more here.


    Monday
    Oct202014

    Advice for Dementia Caregivers: My Podcasts on Lifestyle Improvement Radio 

    Download the podcasts below to listen to an interview about my book, "Inside the Dementia Epidemic: A Daughter's Memoir," with Lifestyle Improvement Radio. Rebeca, above, asked me lots of interesting questions about my eight-year journey caring for Mom, and recorded our discussion as two 30-minute podcasts. Here are the links and the topics we discuss:

    Part one:

    • How I got to the place where I accepted that my mother needed help and that I needed to provide that help
    • What it was like for my mother to live with me and my family, and why we decided that assisted living was the best option 
    • Overcoming the guilt I felt moving my mother into a facility
    • Some of the things that Mom taught me over my years of caring for her
    • How writing was a way to address the frustrations of caregiving and to heal some of those feelings

     Part two:

    • How caregiving affected my health
    • Some lesser-known risk factors for Alzheimer’s disease (such as sleep apnea and high blood sugar)
    • Why exercise is the best antidote for Alzheimer's (although there is no proven way to prevent the disease
    • Why I was a reluctant caregiver
    • How caregiving brought us closer and helped us overcome our challenging relationship as mother and daughter
    • Key advice I would give anyone who is just beginning to be a caregiver for a person with dementia

    I hope you have a chance to listen to these recordings and that you enjoy them. Feel free to leave a comment below.

    Have a great week!