Inside the Dementia Epidemic:

A Daughter's Memoir

Search Topics I've Blogged About :

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

______________________________________________________

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.

To sign up for an RSS feed or emails of this blog, scroll down and look to the right.

—Martha Stettinius

Entries in Social Security Caregiver Credit Act (1)

Wednesday

Aug202014

Elder Caregiving for Years and Years is Fairly New: Why Social Security Benefits Need to Catch Up

Wednesday, August 20, 2014 at 10:20AM

My mother, Judy, and me shortly after she moved from my home into assisted living. If I had left my job to care for her at home, I would have wanted to be able to receive a Social Security credit for a percentage of the wages I would have lost. As many of us live longer, family caregiving for an elder parent or spouse with frailty, dementia or other chronic health problems can last for five to ten years or more. Has “long-term” care always lasted so long? Not even close.

Life expectancies, living arrangements and elder care have changed radically in the last century. It’s time for our safety nets such as Social Security to catch up.

If we look back to the early twentieth century, it’s clear that the extent of our caregiver stress is fairly recent. If you feel exhausted, it’s partly because the responsibilities of elder care were never meant to go on for years and years—and were never meant to be a job for one person with little help.

What does this mean for family caregivers today? How can our social policies better support caregivers?

In my post this week for caregivers.com, I look at elder caregiving 100 years ago compared to today, and share information about a new bill in the House of Representatives, the Social Security Caregiver Credit Act, that would go a long way to updating our social policies to reflect the realities of elder caregiving in the 21st century.

At the end of the article I share an easy way to tell your representative that you want family caregivers to receive Social Security credit for leaving their employment to care for a dependent relative.

Read more here.