Inside the Dementia Epidemic: A Daughter's Memoir

More Advance Praise for

“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. Martha takes us on a brave journey from at-home care to the difficult decision of choosing to have professionals care for her mother in a residential facility. There is heartbreak, joy, and incredibly useful information in this touching memoir that will help anyone facing the task of taking care of an elderly person who can no longer take care of themselves.”

—
Mary Ellen Geist,
author of
Measure of the Heart: A Father’s Alzheimer’s, a Daughter’s Return

“With the passion of a committed daughter and the fervor of a tireless reporter, Martha Stettinius weaves a compelling story of her long journey caregiving for her demented mother with a broad exploration of the causes of dementia, means of treating it, and hopes for preventing it. Her greatest gift to readers is that of optimism—that caregiving can deepen love, that dementia can be fought, and that families can be strengthened. Her book is appealing, enlightening, inspiring.”

—
Barry J. Jacobs, Psy.D.,
author of
The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent

“
Inside the Dementia Epidemic
is special, because it combines a very personal story about how a daughter is affected by her mother’s illness with a broader perspective on Alzheimer’s disease and other dementias. This book is a guide for everyone hit by Alzheimer’s and dementia, and it reads very well.”

—
Marc Wortmann,
Executive Director, Alzheimer’s Disease International

“Many writers have reflected on the experience of being a son or daughter of a person living with dementia, but until I read
Inside the Dementia Epidemic
I had not found one that pulled off the remarkable feat of helping the reader understand and actually feel the journey of both parent and child. This remarkable book is invaluable precisely because it offers us a deeply honest account of both perspectives.”

—
Jude Thomas,
Care Partner, and Co-Founder of The Eden Alternative

“Martha Stettinius has a wonderful style of writing that ignites vivid images. Her first-person style conveys well the family experience with a loved one with dementia: at turns confusing, challenging, heartbreaking, and joyful. Other families going through similar challenges will gain from the stories and the knowledge Martha collects along the way.”

—
Sharon K. Brothers
, MSW, Senior Vice President, Caregiver Village, and CEO, Institute for Professional Care Education

“A wonderful, heartfelt diary of what it feels like to be a family member of someone with an irreversible dementia.
Inside the Dementia Epidemic
is valuable not only for family members who sometimes feel as if they are alone in this journey, but also for healthcare professionals who need to understand the impact this disease has on families. Martha writes not only from the heart (how it feels) but from her head (what she would have done and asked over the years, had she known then what she knows now), and that is the strength of this book.”

—
Joyce Simard, MSW,
Adjunct Associate Professor, University of Western Sydney, Australia; geriatric consultant and author,
The End-of-Life Namaste Care Program for People with Dementia

“Readers who are challenged with caring for a loved one suffering from dementia will find much to guide them in this chronicle of a daughter’s journey to help her mother through the several stages of this dreadful disease. A moving and insightful work.”

—
Claire Berman
, author of
Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive

“A thoughtful and beautifully written book. Martha Stettinius is honest in recording not just the practical difficulties she encounters as she navigates a path through the complex and often illogical world of dementia care services, but also the emotional journey she makes. Martha generously shares the practical, financial, and medical information she has learned, and the emotional insights she has gleaned.

“This book will help you appreciate that you are not alone, but part of a wider community of people who have all been caught up in the ‘dementia epidemic.’”

—
Lucy Whitman
, editor of
Telling Tales About Dementia: Experiences of Caring

“An honest, emotionally-charged, and thought-provoking account and life story of the author’s mother and the dementia journey. Many moments in the book literally took my breath away and made me really think about the dementia journey and the impact this diagnosis has not only on the person but the family who loves and cares for them.”

—
Sandra Stimson, CALA, ADC, CDP, CDCM, AC-BC
Founder and Executive Director, National Council of Certified Dementia Practitioners

“Dementia is an all-consuming and intimate disease, the effects of which linger long after the death of the loved one. Readers will not only find Martha Stettinius’s memoir consoling, they will gain the invaluable advantage of hindsight on things she would do differently if she had to do it all over again.”

—
Joy Loverde,
author of
The Complete Eldercare Planner, Revised and Updated Edition: Where to Start, Which Questions to Ask, and How to Find Help

“I’ve personally found inspiration and deep wisdom in the story Martha tells. She offers the reader—whether we’re now a caregiver, have been one, or possibly will be in the future—an understanding of the challenges and changes that can face the family caregiver. Her beautiful and honest tale deserves our deepest gratitude.”

—
Connie Goldman,
speaker and author of
The Gifts of Caregiving—Stories of Hardship, Hope and Healing

“Martha shares from her heart her struggles to find peace for both herself and her mother as they navigate through the challenges of Alzheimer’s disease.
Inside the Dementia Epidemic
is an excellent, eye-opening account of what Alzheimer’s caregivers go through.”

—
Nataly Rubinstein, MSW, LCSW, C-ASWCM,
Alzheimer’s Care Consultants, Inc., and author of
Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide

“
Inside the Dementia Epidemic
joins a growing body of tales in books and the popular press that describe the poignant, trying experience of devoted family members dealing with the implications of dementia. This story captures well the personal cost of care as a daughter helps her mother through the various levels of the disease and treatment modalities. It reminds us of the terrible toll this disease takes on everyone who comes in contact with it. We have no simple fixes—no medications, no care systems that can make the consequences easier to bear.

“People facing this challenge can read this book to find solace that they are not alone, their frustrations are not of their own making, and no one has the easy answers.”

—
Robert L. Kane, MD,
Minnesota Chair in Long-term Care and Aging, University of Minnesota School of Public Health, and author of
It Shouldn’t Be This Way: The Failure of Long-term Care
and
The Good Caregiver

“Inside the Dementia Epidemic
is much more than a traditional memoir. Martha lets the reader join her personal caregiver’s journey with beautifully executed phrasing, skillful storytelling, and hardcore facts. A fascinating and informative read that not only educates, but touches the heart.”

—
Carol Bradley Bursack,
Founder and Owner, Minding Our Elders, and author of
Minding Our Elders: Caregivers Share Their Personal Stories

“Martha Stettinius shares many of the great lessons of ‘care partnering’ for someone with dementia—not just how to navigate the system, but how to enjoy her time with her mother. Her reflections throughout the book about what she has learned will help others realize early on that they should question their interactions and seek out the best interventions.”

—
Kerry Mills,
President, Engaging Alzheimer’s

“As a nurse, dementia consultant, and daughter of a parent with dementia, I can tell you without hesitation to read
Inside the Dementia Epidemic
if you have a loved one with dementia in your life. Martha’s insights will help you understand why you feel as you do, and why you shouldn’t beat yourself up about it. She includes a wealth of information about the many issues families face. You will be glad you found this book to help guide you.”

—
Cindy Keith, RN, BS, Certified
Dementia Practitioner, author of
Love, Laughter, and Mayhem —Caregiver Survival Manual for Living with a Person with Dementia,
and owner of M.I.N.D. in Memory Care

My mother, Judy, and me at her nursing home in the spring of 2012.

Martha Stettinius

Dundee-Lakemont Press

Horseheads, NY

DUNDEE-LAKEMONT PRESS

110 N Main St

HORSEHEADS, NY 14845

Copyright © 2012 Martha Stettinius

ALL RIGHTS RESERVED, including the right to reproduce this book or portions thereof in any form whatsoever. For information contact Dundee-Lakemont Press at
[email protected]

First Dundee-Lakemont Press trade paperback edition