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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 

    Thursday
    Feb202014

    Aging "in Community" vs. Aging Alone "in Place": My Experiences in Cohousing, and Favorite Resources

    DateThursday, February 20, 2014 at 03:14PM

    My daughter, Morgan, with one of our favorite cohousing neighbors, living "in community"I have lived in a cohousing community with my family for 16 years, and believe that if we age "in community," versus by ourselves "in place," we are more likely to remain healthier longer, stay in our own homes longer, and appreciate the gifts of giving and receiving care.

    We don't have to live in an intentional community like cohousing to age "in community," however. There are many other ways to expand our circle of mutual support, no matter where we live. We can find or create the relationships--especially deep friendships--that will sustain us as we age.

    I believe that aging "in community" helps us remember that, as human beings, we are vulnerable and need each other. That asking for assistance and companionship is not a weakness. That aging well doesn’t necessarily mean running marathons at 80, but helping each other, despite physical or cognitive decline, to enjoy life and feel included and valued.

    In my post this week for caregivers.com I write about this grassroots movement by boomers to age "in community," and I share my favorite books and websites on the subject.  

    Read more here.

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    Saturday
    Feb152014

    My Favorite Blogs for Alzheimer's and Dementia Caregivers

    DateSaturday, February 15, 2014 at 07:12PM

    I've finally added a page called "Recommended Blogs for Dementia Caregivers" to my website. It's an unusual list, I think, maybe with some you haven't heard about. Check it out here.

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    Friday
    Feb142014

    9 Warning Signs that a Person May Have Alzheimer's

    DateFriday, February 14, 2014 at 03:51PM

    At what point should a person be screened by a doctor for Alzheimer’s disease?  What are some of the warning signs that they may need help?

    Alzheimer’s disease is the most common form of cognitive impairment, affecting 1 out of 8 people over age 65, and nearly 50% of people age 85 and older. The warning signs are easy to overlook or deny, however, and for the person to explain away. (Spouses and partners, for example, often do a great job “covering” for each other.) In my case, I denied my mother’s early signs of dementia for many years, thinking that she was just being quirky and stubborn. It was only when she finally gave her doctor permission to talk to me about his concerns that I realized how much she needed help.

    If you suspect that something is wrong with a loved one’s thinking or functioning, but you’re not sure if you should trust your instinct, trust it. Every person progresses differently through dementia, but you are probably correct that your loved one needs to be evaluated.

    Read more of my post this week on caregivers.com.

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    Monday
    Feb102014

    An Infographic on "The Dementia Epidemic"

    DateMonday, February 10, 2014 at 01:43PM

    Did you know that if dementia care in the U.S. (paid and unpaid) were a company, it would be the world's largest by annual revenue, exceeding even Walmart? This infographic, "The Dementia Epidemic," from Mba-healthcare-management.com, is quite well done, I think, so I want to share it with you here. It includes tons of information, such as the most common forms of dementia, and medications available to help lessen symptoms of dementia.

     

    Dementia
    Source: MBA-Healthcare-Management.com

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    Saturday
    Feb082014

    Moving Beyond "Parenting" our Parents: One Daughter's Story

    DateSaturday, February 8, 2014 at 05:01PM

    My mother, Judy, and me early in our caregiving journeyIf you care for a parent who is living with Alzheimer’s disease or another dementia, it can feel as if you’ve switched roles—as if you are the parent and they are the child. There is some truth to this, but your parent remains an adult, and at some level the mother or father you knew. It’s important to treat them that way, even if  it seems that they are not the same person they used to be. And you may be surprised to find new ways to connect.

    In 2005 I wrote in my journal:

    “My mother may sound and act like an adult but is now, in essence, my third child. I would like her to function as an autonomous adult, but she can’t. She doesn’t want to be dependent on me, but she is.”

    Mom had early-stage dementia, could no longer live alone, and had moved into my home with my young family, turning our world upside down.

    Later that year, after Mom moved into assisted living, she said something to me one day that showed that she, too, believed that we had switched roles. It seemed to be a turning point for both of us.

    Read more of this post on caregivers.com.

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