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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 

    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!

     

    Wednesday
    Oct152014

    Will Your Doctor Be Reimbursed for End-of-Life Planning?

    If you are caring for someone who has early-stage dementia, it's a good idea to sit down with them and their doctor to talk about their wishes for the end of their life. I know it's hard, but the earlier you can do this, the better. And if your loved one is living with more advanced dementia, it's equally as important that you meet with their doctor on your own to discuss end-of-life planning. Such discussions are extremely important not only for your loved one but for your own well-being in the future when you may face heartrending decisions about their care. 

    Research shows that family caregivers who have a chance to talk to their loved one's doctor about advance care planning feel less guilt after their decisions as caregivers after their loved one dies. But many of us don't even know if our insurance covers end-of-life discussions. And doctors often do not initiate these conversations. It's usually up to us as caregivers to ask if such disucssions are covered and to schedule them. 

    Unbelievably, Medicare does not currently reimburse doctors for these kinds of discussions, which partly explains why many doctors do not take the time to talk to family caregivers about advance care planning. Such coverage was dropped from the Affordable Care Act five years ago because of an unfounded fear of "death panels." There is hope, however; the Centers for Medicare and Medicaid Services is expected to make a decision by November about whether or not to reimburse doctors for end-of-life discussions. 

    In my post this week for cargivers.com I describe 

    • what end-of-life discussions may include;
    • some info about MOLST/POLST forms and how they can help with advance care planning;
    • where we stand as a nation with insurance coverage for advance care planning; and  
    • how you can support pending legislation in the House of Representatives that would mandate such coverage by Medicare and Medicaid.

    I also share my own discussion with my mother's doctor about her end-of-life care.

    Read "Are End-of-Life Discussions Covered by Your Medical Insurance?" here.


    Tuesday
    Oct072014

    Why Person-Centered Dementia Care Matters

    The Dementia Action Alliance has a new video out that I really love, called "Person-Centered Matters." Just 16 minutes long but filmed by a former National Geographic filmmaker, it beautifully portrays five people living with dementia and how person-centered care helps them live more fully.

    Check out the video here.

    Monday
    Oct062014

    "Slow Dancing with a Stranger": A New Memoir About Alzheimer's Caregiving

    I highly recommend an unflinching new memoir about dementia caregiving:  “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s” by Meryl Comer (HarperOne, September 2014). Few Alzheimer’s memoirs are this honest about the challenges of long-term dementia care, or as moving as a call to action for better dementia care and more funding for Alzheimer’s research.

    Emmy-award-winning broadcast journalist Meryl Comer shows us the devastating cost—personal and financial—of caring for loved ones with this progressive disease, a disease which can require long-term care for ten to 20 years or more.  Comer is president and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative, a nonprofit which supports awareness, diagnosis and research of the early stages of Alzheimer’s disease, and she is also a co-founder of Women Against Alzheimer’s. Comer’s husband, Dr. Harvey Gralnick, was chief of hematology and oncology at the National Institutes of Health until he received a diagnosis of early-onset Alzheimer’s disease at age 58. Comer’s mother, who also has Alzheimer’s disease, lives with Comer and her husband.

    Meryl ComerAs often happens, the first signs of her husband’s early-onset Alzheimer’s were not memory lapses but uncharacteristic behavior and angry outbursts. Comer could not figure out what was going on, and her husband was in denial. They suffered several years of misdiagnoses and rebuffs by doctors who refused to accept that this trim, athletic and highly-intelligent man could be sliding into Alzheimer’s at such a young age...

    Read the rest of my review on caregivers.com.