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 caregiving spouses (1)

Tuesday

Apr292014

Caregiving Spouses and Partners Receive Little Support at Home

Tuesday, April 29, 2014 at 08:18PM

A new report by the AARP Public Policy Institute and the United Hospital Fund shows that family caregivers caring for a spouse or partner struggle to get by with significantly less help in the home than other types of caregivers.

Why is this true, and what can we do about it?

Here’s a portrait of the “average” family caregiver caring for a spouse or partner with a long-term illness or condition. Do you recognize yourself or someone you love?

You’re in your 60′s, retired, working part-time, or unemployed, and you care for your spouse or partner of about the same age at home around the clock. As her long-time companion, you feel as if you should be able to provide nearly all of the care she needs; in fact, on most days you don’t even think of yourself as a “caregiver.” Honoring your vow of “in sickness and in health,” you would rather care for your partner yourself than hire help.

You receive no assistance from home care aides, and your care recipient is rarely visited at home by health care professionals. Lacking adequate training, you find yourself responsible for medical tasks such as cleaning wounds, monitoring medication, and administering injections, tasks that in the past would have been handled by nurses. You serve not only as your partner’s primary nurse, but as her care coordinator, dietician, cook, housecleaner, launderer, chauffer, and activities coordinator. You are also your loved one’s main source of social interaction. Your adult children don’t come around very often, maybe because you assure them that you’re doing fine. And your friends don’t offer to give you a break from caregiving, maybe for the same reason, or because they have no idea how exhausted you feel. You do what you do out of love (or obligation), and usually you feel as if you have no choice.

I don’t mean to paint a depressing picture, but according to the AARP Public Policy Institute and United Hospital Fund report released last week (“Family Caregivers Providing Complex Chronic Care to Their Spouses”), this portrait reflects reality for the majority of family caregivers caring for a spouse or partner.

Read the rest of this blog post on caregivers.com.