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.

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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 parenting parents (1)

Saturday

Feb082014

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

Saturday, 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.