Inside the Dementia Epidemic:

A Daughter's Memoir

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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

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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.

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—Martha Stettinius

Entries in caregiver support groups (1)

Thursday

Feb272014

A New Book I Highly Recommend: "The Caregivers"

Thursday, February 27, 2014 at 08:14PM

A brand-new book, "The Caregivers: A Support Group's Stories of Slow Loss, Courage, and Love," by journalist Nell Lake (Scribner, Feb. 2014), is one of the best books I have read about what life is really like for family caregivers. For those of us who are already caring for a family member or friend, the book provides reassurance that our experiences and feelings are normal. For those who have not yet been “called,” it’s a book of great depth and spirit that will light the way ahead.

Lake observes the members of a caregiver support group at her local hospital, following their stories as they unfold over two years. She is interested in writing a book about caregiving partly because her maternal grandmother, who was diagnosed with cancer in her late 70s, committed suicide rather than “lose control” of her life and be dependent on others. Lake’s own mother is still vital and independent, but Lake wants to learn more about caregiving so she can find ways to navigate her relationship with her mother if her mother needs care. Lake is also aware that, with more people living longer, providing quality, affordable long-term care and support for family caregivers is one of our greatest public health issues.

Nell Lake, author of "The Caregivers"Led by a social worker, the support group reflects the surrounding community: white and mostly middle-class. (Lake acknowledges the inherent limitations of that fact.) As Lake observes the group, she becomes like a caregiver herself, visiting the group members in their homes and their loved one’s facilities, and sharing in some caregiving tasks. She comes to know the families like a friend, and the resulting stories are deeply moving, as engrossing as a well-wrought novel.

Read the rest of the review on caregivers.com.