Inside the Dementia Epidemic: A Daughter's Memoir

  More Advance Praise for

  Inside the Dementia Epidemic

  “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 inter
actions 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.

  INSIDE

  THE DEMENTIA EPIDEMIC

  A Daughter’s Memoir

  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 info@dundee-lakemontpress.com

  First Dundee-Lakemont Press trade paperback edition

  September 2012

  Publisher’s Cataloging-in-Publication data

  Stettinius, Martha.

  Inside the dementia epidemic : a daughter’s memoir /

  by Martha Stettinius.

  p. cm.

  Includes bibliographical references and index.

  ISBN 978-0-9849326-1-0 (e-pub)

  1. Stettinius, Martha —Family. 2. Dementia —Patients

  —Family relationships. 3. Dementia —Patients

  —Home Care. 4. Mothers and daughters —United States.

  5. Caregivers —Biography. I. Title.

  RC521.S745 2012 362.196/83 —dc23

  2012936984

  Cover by Susan Koski Zucker

  Author photo by Sheryl Sinkow

  For information regarding special discounts for bulk purchases, please contact Dundee-Lakemont Press at info@dundee-lakemontpress.com

  Under “Resources,” the author has made every effort to provide accurate telephone numbers and Internet addresses at the time of publication, but neither the publisher nor the author assumes any responsibility for errors, or for changes that occur after publication. Further, the publisher does not have any control over and does not assume any responsibility for author or third-party websites or their content.

  Readers are strongly cautioned to consult with a physician or other health-care professional before using any information contained in this book. No book can substitute for professional care or advice. The author and publisher are not engaging in rendering medical services. If medical problems appear or persist, the readers should consult with a qualified physician or other health-care professional. The author and publisher are also not engaging in rendering legal, psychological or financial advice. Accordingly, the author and publisher expressly disclaim any liability, loss, damage, or injury caused by the contents of this book.

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  For Ben, Andrew, and Morgan

  Care-partners—family, friends,

  professionals and governments—should

  actively seek to understand the person’s

  needs, take full account of existing

  capabilities, and adjust care levels according

  to those needs. Listen to us as we try to

  express these needs and abilities. That way

  we can dance in celebration together

  and embrace our shared future.

  —CHRISTINE BRYDEN, Dancing with Dementia:

  My Story of Living Positively with Dementia

  Contents

  Preface

  PART ONE Home Care

  Judy

  The Decision

  A New Beginning

  Moving In

  Problems at Home

  Instinct

  Our History

  Frayed

  Family Week

  Though Love

  False Relief

  PART TWO Assisted Living

  Small Indignities

  A Fall

  Role Reversals

  Alone in a Crowd

  Not Teir Job

  Pressure to Move

  PART THREE Rehab

  Fractured

  Chunks of Life

  Slowing Down

  Old Friends

  Transitions

  PART FOUR Memory Care

  A Toss of the Dice

  Moving Day

  Settling In

  Living Grief

  In the Moment

  Shock and Awe

  Violent Behavior

  An Evening to Remember

  Reckoning

  Sex and Dementia

  Sharp and Sweet

  Financial Disaster

  What If’s

  What Remains

  Honesty

  Another Search for Home

  PART FIVE The Nursing Home

  Four Kinds of Pain

  Rebound

  Small Pleasures

  Amae

  Is It Alzheimer’s, or Not?

  Dancing Eyes

  Afterword

  Appendices

  Appendix A: Is There a Test to Diagnose Alzheimer’s Disease?

  Appendix B: Medications Approved to Relieve Symptoms of Alzheimer’s Disease

  Appendix C: Risk Factors and Antidotes for Dementia

  Appendix D: Is It All in the Family?

  Appendix E: The Role of Infection

  Appendix F: Sweet Poison: The Toxic Tide of Sugar

  Appendix G: The Benefits of “Memory Consultations” and Early Diagnosis

  Appendix H: Planning for Long-Term Care

  Appendix I: Long-Term Care in an Intentional Community

  Appendix J: Confronting the Epidemic at the National Level and Beyond

  Resources

  Notes

  Acknowledgments

  Index

  About the Author

  Author’s Note

  This is a true story. To ensure privacy I have changed the names and identifying characteristics of the places and people I mention, with the exception of myself, my mother, and other members of my family. To ensure the accuracy of my scenes, I kept a journal and recorded all the details and conversations shortly after they took place.

  I have striven at all times to be honest, but also fair and compassionate. And although I am not a professional in dementia care—I’m a daughter and a family caregiver—my research has been thorough, and portions of my text have been reviewed by experts in dementia.

  —M.S., July 2012

  INSIDE THE DEMENTIA EPIDEMIC:

  A Daughter’s Memoir

  Preface

  For seven years I have coped with my mother’s dementia. I have cared for her at home, in assisted living, a rehab center, a specialized “memory care” facility, and the dreaded nursing home.

  What do we face next?

  In my question lies hope. Hope not just for my mother, Judy, but for me, and for you.

  The journey I have taken with my mother has alerted me to the latest scientific findings about dementia. Although the facts are frightening, they are our only hope if we wish to emerge with our minds intact from what is now a fast-growing epidemic.

  The shocking wake-up call is that this epidemic will also overtake those of us in middle age, unless we can somehow prevent or treat it.

  One in eight people over age sixty-five in the United States ha
s Alzheimer’s disease, and nearly fifty percent over age eighty-five. In 2012, an estimated 5.4 million people in the United States will have Alzheimer’s disease. As people continue to live longer, and the baby boomers grow older, the number of people with dementia will explode. The 35.6 million with dementia worldwide in 2010 is expected to double by 2030 to 65.7 million, and then nearly double again by 2050 to 115.4 million.

  Even if we do not get the disease, or if we get it late in life, we are likely to become a family caregiver for someone with dementia. In the United States in 2011, over 15 million family caregivers provided 17.4 billion hours of unpaid care to family members and friends with Alzheimer’s disease and other dementias. This unpaid care was estimated to be worth $210.5 billion, more than the total for federal and state Medicare and Medicaid spending for Alzheimer’s care. Family caregivers often sacrifice their own health and finances to provide that care. A third of family caregivers report feeling depressed, and sixty percent feel extreme stress.

  Dementia is not only Alzheimer’s (the most common, at sixty to eighty percent), but a Pandora’s Box diagnosis that includes over one hundred conditions. Familial Alzheimer’s—also called “early-onset” dementia—occurs before the age of sixty, and represents 5-7 percent of Alzheimer’s cases. “Mixed dementia”—Alzheimer’s plus another type of dementia—has been shown in autopsies to occur in up to 45 percent of people with dementia. Vascular dementia alone, of which there are several forms, accounts for up to 20 percent of dementias.

  This book is not a lament, however; it is a guide, and, I hope, a means to soften the blow upon all of us. In the course of my own experience, I discovered what could have been done earlier to help my mother, and what can be done now to help us all: Startling scientific findings show that certain changes in diet and exercise—even changes in eye care and sleep patterns—may decrease the risk of developing these diseases. If we are to survive the “silver tsunami,” which will overwhelm half the population in the not-too-distant future, we must join the worldwide movement demanding more dementia research. Alzheimer’s disease is the fifth-leading cause of death in the United States for those age 65 and older, but the only one in the top ten without a means of prevention, a way to slow its progression for more than a few years, or a cure.