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 caregiving (16)

Wednesday

Sep042013

Caring for Our Aging Parents: The Dilemma of Daughters vs. Sons

Wednesday, September 4, 2013 at 02:25PM

My mother, Judy, and me in her nursing home 2 years agoA new study confirms that daughters are much more likely than sons to care for their aging mothers. This is no surprise to many, but what does it mean for our well-being as women if our brothers are off the hook?

Researchers at Cornell University have confirmed what many of us already suspect: Daughters are more than twice as likely as sons to become caregivers for their mothers. According to their study released this week, a daughter who lives close by when a mother experiences health problems is the sibling most likely to become the caregiver. My own brother passed away in 2004, and I have no sisters, but I hear from many other women that caregiving almost always falls to them as daughters (or daughters-in-law).

Other studies have shown that women are much more likely than men to provide daily hands-on care such as bathing, dressing, and feeding. If a man is involved in caregiving, he is more likely to be supervising that care from a distance. (There are many, many exceptions, of course. Men are taking on caregiving in growing numbers. To read about hands-on caregiving from a male perspective, check out Gary Joseph LeBlanc, Bob DeMarco, or “Martyn.”)

My teenager son and daughterAs the mother of a 17-year-old son and 16-year-old daughter, who do I think would be more likely to care for me if my husband were gone and I needed help with long-term care? My daughter. I think that’s because my daughter and I talk more to each other and share our feelings. My son, who just graduated from high school, says “hi” and “bye” as he runs to work or to hang out with his girlfriend. My daughter is busy, too, but she’s just more attuned to my needs (and moods), and more demonstrative physically (she’s a hugger). Whether it’s because of her genetic disposition, her gender, or my own expectations of her growing up, my daughter seems more like a natural caregiver than her brother. I don’t think that’s fair to either her or to her brother, but that’s the way it is.

Read more (published on caregivers.com)