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A Caregiver’s Guide to Connection and
Hope

ROWMAN & LITTLEFIELD

Lanham • Boulder • New York • London
Published by Rowman & Littlefield
A wholly owned subsidiary of The Rowman & Littlefield Publishing Group,
Inc.
4501 Forbes Boulevard, Suite 200, Lanham, Maryland 20706
www.rowman.com

Unit A, Whitacre Mews, 26-34 Stannary Street, London SE11 4AB

Copyright © 2015 by Rowman & Littlefield

All rights reserved. No part of this book may be reproduced in any form or by
any electronic or mechanical means, including information storage and retriev-
al systems, without written permission from the publisher, except by a reviewer
who may quote passages in a review.

British Library Cataloguing in Publication Information Available

Library of Congress Cataloging-in-Publication Data

Parsons, Ronda.
Creating joy and meaning for the dementia patient : a caregiver's guide to connection and hope /
Ronda Parsons.
pages cm
ISBN 978-1-4422-2755-2 (cloth : alk. paper) -- ISBN 978-1-4422-2756-9 (electronic)
1. Dementia--Patients--Care--Psychological aspects. 2. Dementia--Nursing. 3. Caregivers. I. Title.
RC521.P38 2014
616.8'3--dc23
2014042665

TM
The paper used in this publication meets the minimum requirements of
American National Standard for Information Sciences Permanence of Paper
for Printed Library Materials, ANSI/NISO Z39.48-1992.

Printed in the United States of America

To Nan Alice, my partner on a journey neither of us
would have chosen, but one filled with countless
miracles all the same.

To Jack and Marjorie, for answered prayers.

To Harry, for every single blessing.

 “Sing the song of the moment . . .”
—Rabindranath Tagore

Sing the song of the moment in careless carols, in the transient light of the day;
Sing of the fleeting smiles that vanish and never look back;
Sing of the flowers that bloom and fade without regret.
Weave not in memory’s thread the days that would glide into nights.
To the guests that must go bid God-speed and wipe away all traces of their
steps.
Let the moments end in moments with their cargo of fugitive songs.

With both hands snap the fetters you made with your own heart chords;
Take to your breast with a smile what is easy and simple and near.
Today is the festival of phantoms that know not when they die.
Let your laughter flush in meaningless mirth like twinkles of light on the
ripples;
Let your life lightly dance on the verge of Time like a dew on the tip of a leaf.
Strike in the chords of your harp the fitful murmurs of moments.

Rabindranath N. Tagore, “Sing the song of the moment . . .,”

Poetry, A Magazine of Verse 2, no. 3 (June 1913)
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Acknowledgments xi
Prologue: The Turning Point xiii

Grabbing at Shadows 1
Acceptance 15
The Moment by Moment Technique 29
The Joy Continuum 47
A Positive Approach 57
Memories 67
Beauty 77
Creating Emotional Memories 89
Nature 97
The Five Senses 107
Mind Games 119
Communication 131
Dignity 143
Spirit 155
Emotional Security 165
Humor Is the Best Medicine 173
The Caregiver 181
The Business of Dementia 191
 Going Home 203

Epilogue 207
Notes 209
 Appreciation is a wonderful thing. It makes what is excellent in
others belong to us as well.
—Voltaire

would like to thank my agent, Anne G. Devlin of the Max Gartenberg

Literary Agency, for believing that my story was worth sharing with the
world. You made a lifelong dream come true. My deepest gratitude
goes to Suzanne Staszak-Silva, executive editor at Rowman and Little-
field Publishing, for her advice, expertise, and encouragement. I offer
special thanks to associate editor Laura Reiter and everyone involved in
the publication of this book. I would like to express my gratitude to
friend and writer Imelda Cummins-DeMelkon, whose support and wis-
dom were invaluable during the writing of this book. I want to thank
Maureen Antonelli, who always urged me to put pen to paper. I would
like to offer my personal thanks to Rusty Carter of the Virginia Gazette
for publishing my essays and being so supportive. I offer a special
thanks to Harry, whose encouragement and spirit are alive between
every line on these pages. I am especially grateful to my teachers and
the doctors, nurses, and aides who have cared for Nan so tenderly
throughout the years. You taught me how to fill her days with joy. And
finally, I would like to express my deepest gratitude to the multitude of
fellow caregivers that I have met along my journey. Your friendship,
comradery, and support truly made all the difference.
 The Turning Point

Life is a series of natural and spontaneous changes. Don’t resist

them; that only creates sorrow. Let reality be reality. Let things flow
naturally forward in whatever way they like.
—Lao Tsu
The Complete Works of Lao Tsu

ometimes in life when you least expect it, fate knocks at your door.
You can draw your curtains, look through the peephole, and even
pretend that you’re not at home. But in the end, your efforts are to no
avail. Fate is standing on your doorstep, tapping his toe, waiting to look
you square in the eye and hand you an enormous challenge, a burden
greater than any you could have imagined and certainly one you could
never have predicted. In the end all you can do is swing the door wide
open, stand back, take a deep breath, and face the challenge head-on.
This is what happened to me in 2003 when I became responsible for the
care of my mother-in-law, Nan.
Years earlier if you had told me that one day I would be managing
the life of someone suffering from severe dementia, I would have said
that it was impossible, out of the question. In the first place I never
could have imagined myself in that role, let alone envisioned Nan spi-
raling down through the stages of this devastating disease. I never could
have predicted that I would be forced to maneuver my way through the
sibling rivalries and ancient jealousies of my husband’s family. I never
could have predicted that I would be called upon to provide essential
care to a member of the family that I had joined through marriage. And
I never could have predicted on that fateful day when I finally agreed to
embrace this challenge, that I was about to embark on a journey filled
with moments of all-consuming heartbreak, and surprising moments of
unexpected love and joy.
Nan began showing symptoms of the early stages of dementia in
1998 when she was seventy-seven years old, but managed to live on her
own for several more years with the help of nearby family and friends.
However, as her disease progressed, there came a time when her be-
havior could no longer be overlooked or swept under the rug. Once it
became obvious to her entire family that it was no longer safe for her to
live alone, a debate began regarding where she would live and who
would be responsible for her care.
This was an emotionally charged time for everyone involved, and it
was only after countless phone calls and lengthy negotiations that a
decision was reached. Nan would move to Virginia and my husband and
I would be responsible for her financial and physical well-being.
Through the clarity of hindsight, I realize that I was the only person
who knew exactly what this meant. For although my husband loves his
mother as much as any son can, the demands of his job do not allow
time for the day-to-day challenges of caring for a dementia patient. I
think I was the only one who fully understood that Nan’s care was
destined to land squarely on my shoulders.
Now if at this point in my story, I told you in a saintly and condes-
cending voice that I welcomed this challenge and thought that it was a
grand idea that Nan move into an assisted living facility near us, I fear
that you would shut this book and shout “LIAR” at the top of your
lungs. No, I must admit that initially I was dumbfounded and a bit
angry. I had just lost my mother after a long battle with cancer and,
frankly, I wasn’t excited about facing another sad and draining health-
care situation.
My reluctance to take on this responsibility had nothing to do with
my feelings for Nan. My affection for her runs deep, and I consider her
to be an ideal mother-in-law. From the first time that we met she
welcomed me with open arms and treated me with the same kindness
and respect she lavished on her children. Over the years as our friend-
ship grew, we had many wonderful and funny adventures together.
There was the Christmas Day turkey crisis of 1983, when a discrete
hole in a turkey roaster made such a mess in my first kitchen that I
would not be surprised if lurking somewhere deep beneath the floor
boards in that old house there remains a small puddle of dried giblet
grease. There was the time we decided to spend an entire weekend
cutting out wood tulips on a band saw, trying to copy flowers that she
had seen in a local shop. On another occasion we became so lost while
trying to find an antique shop in downtown Columbus that we gave up
on our treasure hunt, only to stumble on a diner that made delicious ice
cream churned the old-fashioned way.
No, she and I are great friends, which only made my hesitation more
heart wrenching. And it is also why, through gritted teeth, I agreed that
it would be best if Nan moved near us in Virginia. Little did I know
then that she and I were beginning on a journey filled with great highs
and deep sorrows—one I could never have imagined, one that changed
who I am today, and oddly, one that I would not have missed for the
world.
We are taught from an early age to always try to do the right thing.
In today’s world of slogans, catchphrases, and five-second sound bites,
it seems to make perfect sense, another item checked off our list. But in
reality when faced with the heartbreaking challenge of caring for a
dementia patient day-in and day-out for years on end, it is no longer a
cliché. It is a demanding reality that can bring the most loving caregiver
to their emotional breaking point. For dementia does not just affect the
sufferer; it reaches its tentacles into the lives that orbit around the
patient, often leaving those lives exhausted and defeated.
When I first began caring for Nan I operated in a defensive mode,
solving problems as they were thrown at me. I would lay awake at night
trying to fix unfixable problems and searching for answers that did not
exist. I made lists and attacked daily problems with vigor, but in the end
I always felt taxed and frustrated. The sad truth was that despite all my
efforts, Nan was drifting further into oblivion each day and I was find-
ing it increasingly difficult to reach her mentally and emotionally. At
one point her behavior became so disruptive that her doctors suggested
that she begin taking a series of drugs to keep her calm. Although I
knew that this would probably be necessary at some time in the future,
I wasn’t ready to throw in the towel just yet. I was frustrated, but not
defeated.
 One afternoon as I was driving home from yet another exasperating
visit, feeling limp with worry and defeat, I had an epiphany that
changed everything. I guess you could call it my aha moment, my turn-
ing point. If I was going to survive I would have to change my attitude
and find ways for Nan and me to forge some kind of a meaningful
channel of communication. She wasn’t happy and neither was I.
Up until this point I had taken my cues from her, spending all my
energy begging her to cooperate. Every day I found myself pleading
with her to take her medicine, eat lunch, change her clothes, and take a
shower. I needed a new approach, a new strategy. I had to find a way to
take charge of the situation. Since I was in this battle for the long haul, I
had best buck up and try a new approach.
Through observation I had come to realize that Nan no longer lived
in a world made up of days or even hours, but instead she lived inside
spontaneous flashes of reality, like fireflies that flicker in the night sky.
In other words, Nan was living her life from moment to moment. As
quickly as recognition arrived, it was gone again. I knew instinctively
that although her understanding was temporary, these moments were
not unimportant. Over time I came to learn that no happiness is too
small or its effect too insignificant to affect positive change. For when
she is content and at peace, the old Nan from long ago would suddenly
appear out of nowhere in the guise of a familiar comment or facial
expression. Then like quicksilver she would vanish. But those momen-
tary associations were all the encouragement I needed to keep trying to
build a bridge and forge a connection between us. Those moments
reminded me of the woman I missed so terribly and proved to me that
she was still in there, lost in dementia’s thick fog. It was then that I
made it my mission to harness Nan’s moments and effectively utilize
their power in order to bring joy and meaning into her life.
I started small. At first my goal was just to see her smile and react
positively to a brief interaction or to an activity that we did together. I
brought favorite foods for her to eat. I played CDs of the old Baptist
hymns she loved to sing. We fed birds as we sat outside in her court-
yard. I tried to create little surprises for her that would trigger even the
briefest moment of happiness. Granted, I wasn’t always successful. It
took time for me to figure out her triggers. But slowly my small suc-
cesses began to build and it wasn’t long before those difficult days
began to become easier for each of us to bear.
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