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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 

    Tuesday
    Aug262014

    The 24-Hour USAgainstAlzheimer's Tongue Twister Challenge!

    You've seen the "ice bucket" challenge that raised tons of money for ALS research, right? Well, USAgainstAlzheimer's, a national advocacy group for people with Alzheimer's disease and their care partners, has launched their own ice-bucket-type challenge:  

    The #Alztonguetwister Challenge!


    In the next 24 hours, record yourself saying

    "Six stick shifts stuck shut" – six times, as fast as you can.

    If you'd prefer not to get your tongue tied, you can donate $20 or more to help USAgainstAlzheimer's in our mission to end this disease by 2020.

    Click this link to watch George and Trish Vradenburg, co-founders of USAgainstAlzheimer's, attempt the #alztonguetwister challenge. Then post your own video in the next 24 hours and nominate three friends – or donate to USAgainstAlzheimer's.

    What do you say: Tongue twister? Or can you give now to help USAgainstAlzheimer's save lives by stopping this disease as quickly as we can?

    Wednesday
    Aug202014

    Elder Caregiving for Years and Years is Fairly New: Why Social Security Benefits Need to Catch Up

    My mother, Judy, and me shortly after she moved from my home into assisted living. If I had left my job to care for her at home, I would have wanted to be able to receive a Social Security credit for a percentage of the wages I would have lost. As many of us live longer, family caregiving for an elder parent or spouse with frailty, dementia or other chronic health problems can last for five to ten years or more. Has “long-term” care always lasted so long? Not even close.   

    Life expectancies, living arrangements and elder care have changed radically in the last century. It’s time for our safety nets such as Social Security to catch up.

    If we look back to the early twentieth century, it’s clear that the extent of our caregiver stress is fairly recent. If you feel exhausted, it’s partly because the responsibilities of elder care were never meant to go on for years and years—and were never meant to be a job for one person with little help.

    What does this mean for family caregivers today? How can our social policies better support caregivers? 

    In my post this week for caregivers.com, I look at elder caregiving 100 years ago compared to today, and share information about a new bill in the House of Representatives, the Social Security Caregiver Credit Act, that would go a long way to updating our social policies to reflect the realities of elder caregiving in the 21st century.

    At the end of the article I share an easy way to tell your representative that you want family caregivers to receive Social Security credit for leaving their employment to care for a dependent relative.

    Read more here.

    Monday
    Aug112014

    Staying Friends with a Person with Advanced Dementia

    "How do you continue a friendship when your friend no longer remembers the story of your friendship?"
                         -- Susan H. McFadden, Ph.D., co-author, Aging Together:
                                   Dementia, Friendship, and Flourishing Communities 

    Book Review:  Aging Together


    I have lived in an intentional community, a “cohousing” community, with my husband and children for 16 years. Our homes are built quite close together, we share outdoor space and “common houses” with meeting rooms, laundry facilities, dining areas, and play rooms, and many residents join village meals several times a week.

    Such an intentional community serves as a kind of laboratory for aging not “in place” but “in community.” As cohousing spreads across the world, it has the potential to teach us a lot about one of the growing challenges—or opportunities—of aging:  how to maintain friendships with people we care about who develop Alzheimer’s disease or another dementia.

    With one in 8 people over age 65 developing dementia, and nearly 50 percent over age 85, each of us is likely to have a friend with dementia, be a care partner for a person with dementia, or develop it ourselves. Aging “in community,” whether we live in an intentional community or a suburb, means that we will have to choose how we respond when our friends start to develop dementia. Will we grow closer, or slip away?

    A recent book, Aging Together: Dementia, Friendship and Flourishing Communities by Susan H. and John T. McFadden (Johns Hopkins University Press, now out in paperback), is an excellent guide for anyone who cares about a friend with dementia.  It’s addressed “primarily to persons who have not given much thought to what will happen to their own friendships when forgetfulness increases.” The key question, the authors suggest, is “How do you continue a friendship when your friend no longer remembers the story of your friendship?”

    The authors of "Aging Together: Dementia, Friendship and Flourishing Communities"Susan is a professor of psychology at the University of Wisconsin, Oshkosh, and writes extensively on aging, religion and spirituality. John, a minister for over 30 years, has served as a pastoral presence to people with advanced dementia. As Susan says in a video of a talk they gave together, “Regardless of whether you or a loved one have a diagnosis of dementia, we are all living with dementia. We need to tell a new story about dementia—a story that is not defined by fear and exclusion.”

    In the video, John says “We can, together, weave a new story—a story about continuing friendships, rather than withdrawing from friendship. It’s a story about building dementia-friendly communities where our neighbors with dementia, and their care partners, are still very much a part of the give and take and flow and life together in community….[You can tell your friend,] ‘You’re going on a difficult journey, but you don’t have to do it alone. I, your friend, will travel it with you; I will not abandon you.’ ”

    Read the rest of my review of their book and watch their video on ChangingAging.org.

    Thursday
    Aug072014

    Is It Worth the Cost to Hire a Geriatric Care Manager?

    My mom, Judy, and my son, Andrew, when he was one, visiting Grammy's "big lake water" at her isolated cottage. Mom's symptoms of dementia were just beginning, and it took me several years to figure out what was going on. Looking back, I wish I had hired a geriatric care manager to assess her living situation.Occasionally on this blog I write about things I wish I had done differently as a care partner for my mother, Judy, who lived with vascular dementia and probable Alzheimer’s disease. Today I’d like to talk about geriatric care managers—what they are, and why I wish I had hired one.

    Even though I felt acutely stressed as a “sandwich generation” caregiver (caring for my children as well as my mother), I rejected the idea of hiring a geriatric care manager (a GCM). I was trying to stretch my mother’s modest savings, and thought that hiring a GCM would be too extravagant.

    Looking back, I wish I had hired a GCM, even before Mom moved into my home. A GCM would likely have had a real impact on the choices I made and the quality of my mother’s life, my life, and that of my husband and children.

    In my post this week for caregivers.com, I outline some of the ways we could have benefited from hiring a GCM, and discuss the main reason people decide not to hire a GCM.

    Read more:  Five Reasons to Hire a Geriatric Care Manager, and One Perhaps Not To

    Monday
    Jul282014

    Inspiring Interview with "Alive Inside" Director

    Wow. I highly recommend taking eight minutes to watch the interview below with the director of the 2014 Sundance Film Festival's Audience Favorite, the documentary "Alive Inside," about the power of music to reach people with advanced dementia--specifically music from their childhoods. 

    Michael Rossato-Bennett is so excited about the subject of his film that he would like to change the name of the film to "Make Grandma a Playlist!" He says that "music from your formative years hits you in a way that nothing else does." Rossato-Bennett was commissioned to design the website for the nonprofit Music and Memory, which campaigns to bring personalized music to nursing home residents, and he was so impressed with the program that he decided to document the work of Music and Memory in a film. 

    Seventy-five percent of the people he filmed in nursing homes with advanced dementia--people who usually sit slumped down, unresponsive--"come alive" when they listen to their favorite music from their childhood and teen years on headphones. When the headphones are taken off, they are able to talk about their memories and have a real conversation.

    As he says, the parts of the brain that process music are "basically spared" by Alzheimer's (and perhaps other dementias). Despite advanced dementia, all people have "life deep down inside us."

    Music is not a cure for dementia, of course, but personalized music can be amazingly powerful.

    Check out his interview, or my blog post last week, for more information about the film, which opened last week in select theaters across the country and will be available on iTunes and as a DVD in October.