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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 Alzheimer's (28)

    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

     

     

    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
    Nov132014

    A Book Give-Away--and 3 Book Reviews--for Nat. Family Caregivers Month

    In honor of National Family Caregivers Month, here are three new books for caregivers that would make excellent holiday gifts. The first is a beautiful hardcover memoir in cartoon form that I’m giving away in a drawing.

    1. “Can’t We Talk About Something More Pleasant?” by Roz Chast

     

    2. “When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers,” by Mara Botonis,

     

    and 

    3. “On Pluto: Inside the Mind of Alzheimer’s,” by Greg O’Brien

     

    Check out my reviews of these books, and how you can enter a drawing to win a copy of "Can't We Talk About Something More Pleasant?" on caregivers.com here.

    Thursday
    Nov062014

    The Shadow Box Memory Project for Alzheimer's Awareness: A Survey

    My “shadow box” (a 12 in. by 12 in. recessed frame for pictures and memorabilia) honoring my mother, Judy, who lived with Alzheimer’s diseaseDo you know what Alzheimer's disease lacks in the United States? A national campaign like the AIDS Memorial Quilt Project: a sea of images that would evoke the true personal and collective cost of Alzheimer's disease.

     

     

     


    The newly-formed WomenAgainstAlzheimer’s Network would like to launch just such a national awareness campaign. They call it the "Shadow Box Memory Project," but so far it's limited to a few leaders in Alzheimer's advocacy. Should WomenAgainstAlzheimer's expand the project nationwide? That's the question--and you can help them decide. Take their 2-minute survey here to help them gauge interest in the Shadow Box Memory Project.

    Shadow boxes are 12 in. by 12 in. recessed frames that hold photos and memorabilia honoring a loved one. Imagine thousands of such boxes side by side, row upon row--like a giant quilt. Imagine the effect of such a display on those in power, our representatives who have been in denial about the dementia epidemic and the need for a massive increase in Alzheimer's research funding. And the effect on those without much power, those of us who may feel alone in our struggles with dementia or caregiving.

    Here's the survey link again:  https://www.surveymonkey.com/s/GLLXNHK

    Thank you!


    Tuesday
    Nov042014

    One Woman's Fight to Transform Alzheimer's Care

    Judy BerryI'm thrilled today to share with you a pdf of an article that is not available anywhere else on the Internet--an article from this month's MORE Magazine which I scanned today at Kinko's just so I could share it with you. (I hope I don't get in trouble for sharing it. But I'm so excited, I'll take that risk.) It's an article about Judy Berry, the founder of the Lakeview Ranch model of dementia care. 

    Twenty years ago, Berry's mother had Alzheimer's disease and was so aggressive in her behavior that she was kicked out of numerous elder care facilities. Berry searched tirelessly for a loving facility for her mother where she would get the care she needed. Unfortunately, her mother died never having received the quality dementia care she deserved.

    It was a tragic period that moved Berry to start her own home in Minnesota for people living with dementia whose behavior made it challenging to find appropriate care in other facilities. She learned everything she could about dementia, then used her savings to start a home called the Lakeview Ranch. After a while she was able to open a second home. Scholarships are available through donors to help residents with lower incomes and those on Medicaid.

    For many years now, Judy Berry and her Lakeview Ranch have exemplied the very best in person-centered dementia care--care that can be replicated in any setting.

    Here's the article:  "What She Couldn't Do for Her Mother," by Julie Halpert

    And here's more about Judy Berry in my debut blog post.