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

Order the Book

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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 caregiving support (2)

Thursday

Mar272014

Book Review: The ABCs of Caregiving

Thursday, March 27, 2014 at 05:17PM

“Some caregivers believe that they must devote every waking moment to their loved one: it’s their responsibility, duty and commitment. Only by giving until it hurts can this all-consuming obligation be fulfilled.”
--Nanette J. Davis, Ph.D., author, "The ABCs of Caregiving:
Words to Inspire You"

Does that quote sound like you as a caregiver? It definitely reminds me of myself in my early days as a caregiver to my mother, Judy. When she moved in with me and my young family, I thought I could be all things to all people, if I just tried hard enough.

If you feel over-extended as a caregiver, I recommend an antidote: a little book called “The ABCs of Caregiving: Words to Inspire You.” It’s a short, sweet read, a book you might keep on your bedside table and return to again and again.

Nanette J. Davis, Ph.D., the author of two other books on caregiving, was the primary caregiver for her husband as he slowly declined with a long-term condition. She knows what it’s like to be on the front lines of caregiving, and to grieve for someone you love while they are still alive. She understands the daily stresses of caregiving, how they can leave you feeling exhausted, frustrated, and angry at times. She gets it. She’s been there.

But in her book, “The ABCs of Caregiving: Words to Inspire You,” Davis focuses on how you can feel empowered and uplifted as a caregiver, not defeated. Davis draws not only on her own experience as a caregiver, but on her interviews with 60 family caregivers.

Nanette J. David, Ph.D., author of "The ABCs of Caregiving: Words to Inspire You"The book is divided into brief sections on “words to inspire you” for each letter of the alphabet—for example, “acceptance,” “compassion” and “perfectionism.” Each section is a sort of meditation, an affirmation of both the importance of your role as caregiver and the need to focus on your own well-being.

Read the rest of my review on caregivers.com.

Are You Caring for a Person with a Rare Disease?

Thursday, March 6, 2014 at 05:07PM

My sweet Andrew with his Grammy, my momThirty million people in the U.S. are living with a rare disease, and an estimated 350 million world-wide. Often, it's difficult for them and their care partners to find information and support.

That was the case for me when our son, Andrew, developed a rare disease when he was 8 years old. The disease made his esophagus swell up, and he couldn't swallow solid food. The only thing he could eat was pureed soup. It took me months to find a doctor who recognized the symptoms, but fortunately, after a year of steroids and avoiding wheat and dairy, Andrew's symptoms disappeared, and he's been disease-free for 10 years. Not everyone is that lucky.

In my post this week for caregivers.com, I review a brand-new website for rare disease caregivers from the Caregiver Action Network called Caring for Rare Disease Caregivers: A Guide for Family Caregivers of Loved Ones with Rare Diseases.

Even if you are not caring for a person with a rare disease, it's worth checking out this website. It's full of information that will be useful for all care partners, including those who are caring for person with dementia.

Read more about this new website here.