From the back cover:
"A remarkable, brutally honest, and beautifully written account of what it's like to take on the role of caregiver for a loved one with dementia.”
—Mary Ellen Geist, author of "Measure of the Heart:
A Father’s Alzheimer’s, a Daughter’s Return"
When her mother, Judy, plunges her car into a snow bank, Martha Stettinius herself is “snow blind” and innocent of the truth. More than an illness, dementia is a fast-growing epidemic. Martha’s dogged attempts to care for Judy soon make her an expert on this threat: 1 in 8 people over age 65 will have Alzheimer’s disease or another dementia, and nearly half of us over age 85.
Martha guides us through assisted living, rehab, “memory care,” and a nursing home. Through skillful storytelling, she shares the bottom line that we all need to know: how to finance care, avoid pitfalls, sort out caregivers, evaluate a facility, and investigate more humane homes such as those in "The Eden Alternative” and “Green House Project.” She learns to overcome her challenging relationship with her mother, and reach the deepest core of Judy’s spirit.
Martha supplements this mother-daughter love story with facts and appendices reflecting the cutting edge of dementia research. She refuses to surrender to hopelessness. As Martha has learned to sit in silence and hold her mother’s hand, she has also learned to speak up, research, and reach out to give us all new ways to win the war.
The author writes:
Becoming a caregiver for an elderly parent is a huge, emotional, and confusing life transition—a middle-age “coming-of-age” that most of us will face at some point. Caregiving is a job, and we cannot do the job alone. We can navigate this transition successfully if we have enough help and information, and I hope that my book will serve as both support and inspiration.
“Inside the Dementia Epidemic: A Daughter's Memoir” is not a how-to book, but a story written like fiction in scenes and dialogue. I know of no other memoir by an adult child caring for elderly parents that gives readers an inside look at so many kinds of care in so many settings: care at home, in assisted living, a hospital, a rehabilitation center, a "memory care" facility, and a nursing home.
In addition, few books by adult children caring for a parent with dementia offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I experienced and felt with Mom was different, and I wanted to share our story.
"Inside the Dementia Epidemic" is more than a memoir:
In 9 concise appendices, I include information about planning for long-term care, recent dementia research, and ways we might be able to prevent developing dementia ourselves.
“Inside the Dementia Epidemic” is a call to action. We need
- a radical shift in what’s called the “culture of elder care,” and
- a substantial increase in federal funding for dementia research, dementia care, and support for family caregivers (beyond the Obama administration's minor increase in February of 2012).
More about the story:
As adults my mother and I always lived our own separate lives—Mom as a fiercely independent divorced woman, and me as a fiercely independent daughter who moved away from home at the age of 17 and supported herself in far-away cities. Mom and I had a way of butting heads, so I'd kept my distance.
She first showed signs of vascular dementia from small strokes fifteen years ago, and most likely also has Alzheimer's Disease. (A definitive diagnosis of dementia can be elusive.) By the end of 2004 I could no longer deny that she was struggling, that something was deeply wrong. My husband and I invited her to move in with us and our two children in an intentional community.
Over the next seven years, as her needs changed—and I realized my limitations—my mother lived in five different care settings. My book chronicles each transition, each challenge, each lesson I learned along the way, in the style of fiction, in scenes and dialogue.
Despite the losses inflicted by dementia, my mother found moments each day to enjoy. I was often surprised by just how "here" she remained. She was still Judy, and still my mother.
Years ago, when she was in a 12-step program for alcoholism, Mom used to tell me to "Watch for the people who smile when they see you coming." Though in her last three years she could barely speak, she still shared her brilliant smile, and her joyful appreciation of others never failed to lighten and inspire me.
Buy the Book
Read a sample of Inside the Dementia Epidemic:
A Daughter's Memoir:
Ch. 1: "Judy"
Ch. 2: "The Decision"
Ch. 20: "Slowing Down"
Appendix B: "Medications Approved to Treat the Symptoms of Alzheimer's Disease"