Search:


Connect with me on:

 

 

Subscribe to my blog posts:

This form does not yet contain any fields.

      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 

    Friday
    Oct032014

    Best Books About Dementia and Caregiving

    photo from the blog "The Generation Above Me"Are you looking for recommendations for books about Alzheimer's, dementia or dementia caregiving? Karen D. Austin of the popular blog "The Generation Above Me" has posted a list of her favorite dementia-related books, with links to her longer reviews of those books. I'm honored to have "Inside the Dementia Epidemic: A Daughter's Memoir" included. Thank you, Karen. What a lovely surprise this evening!

    Karen writes:

    "Even though my approach to aging is pretty broad, I have a persistent interest in cognition. Not only do I read about healthy, normal, age-related changes to the brain, I also read about change caused by disease.

    "I am particularly interested in how dementia changes a person's cognition and how caregivers respond.

    "I have read more than a dozen books (novels, reference books, memoirs, etc.), and I hope to read many more.

    "Here are some quick reviews of some of these books with links to longer reviews. I plan on updating this page as I read more.

    "1. Dosa, David (2010). Making the Rounds with Oscar. The author describes residents of a skilled nursing center who are moving into late-stage dementia and how their loved ones are responding to the challenges."

    Read the rest of Karen's recommendations here.

     

    Wednesday
    Sep242014

    New "Evermind" Technology Can Help Supervise Elders Living Alone

    Mom and my son at her cottage around the time I began to worry about her living aloneI rarely review products on this blog (just dementia-related books), but I was approached by Evermind, a new company that makes an intriguing tool to help caregivers supervise the well-being of their loved ones who live alone. It's something that I wish had existed 10 years ago when Mom lived by herself in her isolated cottage on a lake. This simple piece of technology can help reassure you that your loved one is out of bed and going about their usual routine by monitoring their use of electrical appliances.  

    Here's how it works: A small, white Evermind box plugs into a wall outlet or power strip, with the appliance plugged into the box. Using built-in wireless Internet, Evermind alerts you if the appliances your loved one normally uses each day have not been turned on or off. Compatible appliances include microwave ovens, coffee makers, TVs, lamps, curling irons, CPAP machines, garage door openers and more. No home Internet connection is required.

    For more information, read my review on caregivers.com, or visit Evermind.us


    Friday
    Sep192014

    Keeping Your Blood Sugar Down Lowers Alzheimer's Risk

    The last 10 years of my mother's life she seemed to live on ice cream, cookies and other high-carb foods. What did that do to her brain? What has the low-fat, high-carb American diet of the past 20 years done to all of our brains?One of the things I care most strongly about as a dementia caregiver advocate is encouraging caregivers to do what they can to reduce their own risk of dementia. I know it often feels as if we are too busy to even go to the doctor for ourselves, but it's important to be aware of what can increase our own risk of developing Alzheimer's disease or another common dementia such as vascular dementia from small strokes.

    Did you know that 50% of Americans are either diabetic or pre-diabetic (that is, with blood sugar on the high end of normal), putting them at much higher risk for cancer, heart attacks, stroke and dementia? 50%!! According to the research I did for my book, someone like me who is pre-diabetic is 70% more likely than someone with normal blood sugar and insulin levels to develop Alzheimer’s disease.

    But most of us who are pre-diabetic never get a diagnosis. I am convinced that the rising epidemic of diabetes and pre-diabetes is directly related to the dementia epidemic. (In fact, Alzheimer's disease has been called "Type III Diabetes.") Of course there are probably many other causes, and there is no proven way to prevent Alzheimer's disease or other dementias. But that does not mean that we are powerless.

    Here is what I do to lower my blood sugar and risk of developing Alzheimer's disease and vascular dementia: I try to eat Paleo (protein, healthy fats and lots of veggies--very few carbs). I am active in a 12-step program for those who eat certain foods compulsively (I am a sugar addict). And I exercise regularly, including weight training twice a week, which has been shown in research studies to slow cognitive decline in people with mild cognitive impairment. I've lost 50 pounds but have another 50 to go.

    One sign of being pre-diabetic (also called having "insulin resistance") is having extra weight around your middle. If you have a belly at all, ask your doctor for a blood sugar test. And if she seems unconcerned that your numbers are high--because you don't yet have full-blown diabetes--don't let her complacency fool you into thinking you're not at risk. You are. Especially if you have belly fat in middle age. Keep your blood sugar (and accompanying insulin levels) down and you can help protect your brain from unnecessary damage. 

    Here is a really good article about pre-diabetes: "Pre-Diabetes, Diabetes Rates Fuel National Health Crisis"

    Thursday
    Sep182014

    Why You Should Watch "The Genius of Marian"

    Lately a lot of my Alzheimer activist friends have been talking about the documentary "The Genius of Marian." It's a "must-see" they say. Tonight I understand why. If you know anyone with Alzheimer's disease, I encourage you to click on this link to download the video. Pour yourself a glass of wine or a cup of hot chocolate, grab a box of tissues (or the arm of a loved one) and settle onto the couch for one of the most moving films I've seen in a while. "The Genius of Marian" is showing in select theaters across the country, but is also available to stream free via PBS through October 8th.

    Watch the trailer:

     

    And here is an excerpt of the description of the film from its website:

    "'The Genius of Marian" is an intimate and courageous portrait of filmmaker Banker White's 61-year-old mother, who is struggling with early-onset Alzheimer's disease. As importantly, it is a film in which paintings, home movies, photos and current footage come together to depict a family afflicted with Alzheimer's in two generations — and fighting to cope with loss while holding on to its collective memory.

    "Pam White, whose mother, Marian, died of Alzheimer's, is the center of this story and the family, even as the disease drains her memories and alters her personality. Yet, somehow, through all the comic and tragic incidents that mark the illness's inexorable progress, Pam, her husband and her kids, find something in themselves, as a family, that can't be taken away. Even late in the film, in a lucid moment, Pam says, 'This doesn't really change anything.'

    'The Genius of Marian' follows Pam's struggles, from early episodes of word fumbling that seem almost funny and attempts to hide 'memory issues,' to more serious states of confusion and distress, emotional outbursts and increasingly quarrelsome resistance to her care—and caregivers. Then comes helplessness in everyday tasks. Ed, to whom she's been married for 40 years, patiently bears the brunt of the care and his wife's frustrations. He manages by remembering 'the phenomenal life she’s given me.' In addition to Pam's eldest son, Banker, her son Luke and her daughter, Devon, and Devon’s own young family all pitch in to help Pam hold on to as much as she can for as long as she can.
     
    " 'The Genius of Marian' offers special insight into how, for Pam and her family, the struggle is not only to cope with the physical realities of Alzheimer's, but also not to let the disease psychologically overwhelm them. They know Alzheimer's ultimately will take Pam, but they won't let the disease define their memories of her or of the ways they have been blessed by her presence. White's film, like his mother's book, is about an amazing woman. She, too, cannot be forgotten.

     

    " 'I have been making documentary films for more than a decade, and each project has been deeply important to me in its own way,' says director Banker White. ''The Genius of Marian' is the most personal and challenging project I have ever undertaken. I approached this film both as a loving son and as a patient observer.

     

    " 'On the surface, the film is about my family's effort to come to terms with the changes Alzheimer's disease brings. But it is also a meditation on the meaning of family, the power of art and the beautiful and painful ways we cope with illness and loss. The last few years have been a roller coaster of emotions, filled with frustration, sadness, joy and celebration..."

    I found that Pam reminded me of my mother, Judy, left, when Mom was about age 76, four years before she died, when she could still talk but often could not find the right words, when she no longer read (she had always been a big reader), and needed more and more help with day-to-day activities like getting dressed and brushing her hair. Part of what is so poignant about "The Genius of Marian" is that Pam was so much younger than Mom when she reached that stage.

    The film also made me realize that for many families, Alzheimer's disease is truly "a long good-bye," as it's often called, and not, as it was for me and Mom, a "long hello." In this film you can see how Pam's loving family is losing her day by day, but for Mom and me caregiving was a chance for us to grow closer, to mend our challenging history together.

    It has now been two years since my book came out, and I realize that the experience of the family in "The Genius of Marian" may be more typical than my own experience--especially for families affected by young-onset Alzheimer's disease (before age 65). I still believe that many moments of joy can remain, but I understand better now the devastation of this disease. Yes, the person remains "in there" to some extent, and you can connect with them as the family in this film tries to do, but watching the gradual loss over years and years of the person's talents and vitality takes a dreadful toll on everyone around them. 

    Again, you may download the entire documentary here until October 8th, order the DVD, or watch it in select theaters. It's a stunning work of art. Enjoy.

     

    Wednesday
    Sep032014

    New Award Recognizes Long-Term Caregivers Who Blog

    Do you know someone who has cared for a severely disabled family member at home for ten years or more, and who writes about caregiving on a blog?

    When my mother, Judy, who had dementia, lived with me and my young family nine years ago, and I worked outside the home, writing was my safety release valve. Jotting down my thoughts and worries in stolen moments in notebooks and on scraps of paper helped me keep my sanity while I struggled to come to terms with my new role as a “sandwich generation” caregiver. But the sustained writing that formed the chapters of my caregiving memoir didn’t happen until Mom moved into assisted living and I had more time to breathe. And I didn’t start a blog until my book came out a few months before Mom passed away two years ago. Sometimes I wonder, if Mom were living with me today, whether I would be posting my worries, fears and lessons learned on a blog. But back then a blog never occurred to me.

    New recognition for blogging caregivers


    A brand-new award program seeks to honor those of you who are blogging about your experience caregiving full-time at home for a family member with a severe disability.  The program, launched last week, is called the “Caregifted Blog of the Week Award,” and is a partnership between the blogstream  ChangingAging.org, which challenges conventional views of aging, and the nonprofit Caregifted.org, which grants respite to long-term caregivers.

    Read more about the Caregifted Blog of the Week Award, and how you can nominate someone, here.

    Page 1 ... 2 3 4 5 6 ... 21 Next 5 Entries »