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.

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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 care partners (1)

Thursday

Apr242014

How New Dementia Caregivers Can Become Care "Partners"

Thursday, April 24, 2014 at 04:10PM

Mom, age 74, and me when she lived in assisted living, 2 years into my 8-year caregiving journeyA reader on eCareDiary.com writes:

"We just found out that my husband has early-stage dementia. This news is a big shock to both of us and I know our relationship is going to go through some changes. How should I prepare myself?"

This is an excellent question. For my post this week as a consultant on eCareDiary.com, I try to answer it.

As I was writing my response, I thought of my neighbor, whose wife has just been diagnosed in her late-60s with Alzheimer's disease. He and I talked over coffee one day, and I hope my tips about becoming a "care partner" will help anyone like him who is new to dementia caregiving.

To the reader's question, I responded:

"I’m very sorry that you are both facing this diagnosis, as it is indeed the beginning of what will most likely be a challenging journey. I am glad, however, that you have already sought help as your husband’s care partner. So often we do not realize that we need support until we are exhausted and burned out.

First, let me note that I use the term 'care partner' instead of 'caregiver' because if you think of yourself as a care 'partner' for your husband, it will remind you that he is much more than a 'dementia patient.' A person with dementia continues to have strengths and abilities, to experience a full range of emotion, and to be able to give as well as receive care.

How can your husband continue to care for you? In early-stage dementia, for example, your husband may be able to help make some decisions about his care, so that those decisions do not fall entirely onto your shoulders. As his dementia progresses, he will most likely be able to care for your emotional needs at times by listening to you or sharing a hug. Even if he loses his ability to speak, as is common in the later stages of dementia, you will find ways to communicate with each other and share affection..."

Read the rest of the post on eCareDiary.com.