"Inside the Dementia Epidemic: A Daughter's Memoir" has been described as "the un-flinching and hopeful story of one woman’s journey from estranged daughter to devoted caregiver, and a vivid overview of the challenges of Alzheimer’s care."
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| Available now! Published September 2012 |
Book Description
Inside the Dementia Epidemic: A Daughter's Memoir tells the story of Martha's long, and often reluctant, journey as a caregiver to her mother with Alzheimer's disease, while exploring the causes and potential treatment and prevention of dementia.Written in real time, Inside the Dementia Epidemic shares the lessons she learned over 7 years of caregiving, at home and in a range of dementia care facilities. Martha describe not only what she learned about navigating the system, but how she 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, her troubled relationship with her mother was transformed, and she learned to enjoy and nurture her spirit through the last stages of dementia.
Appendices 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.
Martha Stettinius, Author of the New Book
"Inside the Dementia Epidemic: A Daughter's Memoir":
In 2005 I became the main caregiver for my mother, Judy, a role I never expected, and at first resisted. At seventy-two, she could no longer balance her checkbook, and the lakeside home where she had lived alone for twenty-five years overflowed with garbage and recyclables. Unable to cook, she was living on crackers and unfiltered lake water.
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| Martha Stettinius, author of "Inside the Dementia Epidemic: A Daughter's Memoir" |
Each winter her steep, gravel road left her cottage inaccessible except by foot, so Mom would park her car at the top of the cliff and carry her groceries down the hill in a small, red backpack, creeping along with ice cleats on her boots for traction and a ski pole in her hand for balance.
I knew that I had to move her out of there. I offered to take her into my home an hour away with my husband and two children. I wanted to keep her from losing more weight, and protected from falling on the hill.
Though at first cheerful and grateful for my help, my mother took the loss of her home as hard as one would expect. She grew sullen and withdrawn, and I quickly felt overwhelmed working, taking care of my children and tending to Mom. In the months she lived with me I learned my first tough lesson as a "sandwich generation" mom—I couldn't be a superwoman.
Seven years later, my mother is living with late-stage dementia. Inside the Dementia Epidemic chronicles the challenges I faced as her dementia worsened, and how I sought help. She has lived in assisted living, a rehab center, a "memory care" facility for people with dementia, and the dreaded nursing home. Our years together have presented twists and turns that I never expected, transforming our troubled relationship, and affecting me profoundly.
Back in 2005 I had no reason to know the intricacies of these different kinds of elder care facilities, let alone how to pay for them. Maybe the distinctions are hazy for you as well. But if you are the child of aging parents, the need to access these services may be in your future, too, ready or not. My story will demystify these terms as I sought to care for my mother in a way that worked for my whole family.
I wish all of you a caregiving journey as free of guilt and worry as humanly possible—a journey that few of us look forward to, but that can bring us much appreciation and tenderness.
"Inside the Dementia Epidemic: A Daughter's Memoir" is also a call to action for:
- more compassionate dementia care
- radical changes in the culture of elder care
- a substantial increase in federal funding for dementia research, and
- more support for care and services for people living with Alzheimer's disease and other dementias, and their care partners.
Click here to read the Preface, three sample chapters, and one of the appendices ("Sweet Poison: The Toxic Tide of Sugar") from Inside the Dementia Epidemic: A Daughter's Memoir.
Excerpts from Amazon reviews...
I received this book in today's mail and have finished it before 8 pm! The honesty by the author about her feelings toward her mother and her care were heart felt and thought-provoking.Alzheimers is a disease that impacts many families and, unfortunately, the caregiver support is not what it should be. Ms. Stettinius' memoir shows the need for more support not only for the patient, but for the caregiver. I struggle now with where to turn for decisions about care, Medicare/Medicaid, placements, medication, etc....it's good to know we are not alone, but sad to know we are in this position.
A wonderful, heartfelt diary of what it feels like to be a family member of someone with an irreversible dementia. Inside the Dementia Epidemic is valuable not only for family members who sometimes feel as if they are alone in this journey, but also for healthcare professionals who need to understand the impact this disease has on families. Martha writes not only from the heart (how it feels) but from her head (what she would have done and asked over the years, had she known then what she knows now), and that is the strength of this book.
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