A Return Journey

Sue Petrovski

Description

The Return Journey is the result of Susan Matthews Petrovski's personal journals during her mother's 8-year Alzheimer's journey and her correspondence with other Alzheimer's caregivers kind enough to share their innermost feelings and emotions.

These caregivers' stories are an inside view into the lessons to be learned from looking through the personal peephole of family members at the heart of the Alzheimer's experience.

Petrovski examines right and wrong choices, which will help those whose Alzheimer's journey or caregiving journey is just beginning, clearly and wisely explaining that with Alzheimer's there are no "right" ways, no "best" decisions, and no "perfect" answers.

PART ONE: CARING AND CAREGIVING

Introduction to Part One:An Explanation of A Return Journey

ONE: The Enormity of It All

TWO: My Mother’s Story

THREE: The Most Hurtful Things

FOUR: Developing a Caregiver’s Mindset

FIVE: Day by Day with the Stranger

SIX: A Few Extra Moments, Please

SEVEN: Tales of Laughter and Love

EIGHT: Guilty Decisions

NINE: With Every Goodbye We Learn

PART TWO: A CAREGIVER SAMPLER

Introduction to Part Two: What’s it Like to Be . . . ?

TEN: Children in the Family

ELEVEN: The Smudged Years

TWELVE: Faith, Hope, and Love

Epilogue

Notes

Appendices

Resources

Sujets

• Caregiving
• Medical
• Médecine

Informations

• Publié par: Purdue University Press
• Date de parution: 15 septembre 2017
• Nombre de lectures: 0
• EAN13: 9781612495101
• Langue: English

Extrait

A RETURN JOURNEY
Hope and Strength in the Aftermath of Alzheimer’s
Sue Matthews Petrovski
A RETURN JOURNEY
Hope and Strength in the Aftermath of Alzheimer’s
Purdue University Press West Lafayette, Indiana
Copyright 2003 by Purdue University. First printing in paperback, 2017.
All rights reserved. Printed in the United States of America.
Paperback ISBN: 978-1-55753-790-4 ePDF ISBN: 978-1-61249-509-5 ePUB ISBN: 978-1-61249-510-1
The Library of Congress has cataloged the earlier hardcover edition as follows:
Petrovski, Sue Matthews.
A return journey : hope and strength in the aftermath of Alzheimer’s / Sue Matthews Petrovski.
p. cm.
Includes bibliographical references.
ISBN 1-55753-302-4 (cloth: alk. paper)
1. Alzheimer’s disease—Patients—Home care. 2. Caregivers. I. Title.
RC523.P43 2003
362.1’96831—dc21
2003007670
Cover art contributed by Memories in the Making, a unique program offered by the Alzheimer’s Association to encourage individuals with dementia to express themselves. Through art and the creative process, these individuals speak to us, offering us the essence of themselves as human beings.
Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
—Dylan Thomas,
from The Poems of Dylan Thomas ,
copyright ©1952 by Dylan Thomas.
Reprinted with permission of
New Directions Publishing Corp.
To my mother and my father and all of those with
Alzheimer’s Disease who have lived with delight
and “raged against the dying of the light.”
Contents
PART ONE: CARING AND CAREGIVING Introduction to Part One: An Explanation of A Return Journey ONE The Enormity of It All TWO My Mother’s Story THREE The Most Hurtful Things FOUR Developing a Caregiver’s Mindset FIVE Day by Day with the Stranger SIX A Few Extra Moments, Please SEVEN Tales of Laughter and Love EIGHT Guilty Decisions NINE With Every Goodbye We Learn
PART TWO: A CAREGIVER SAMPLER Introduction to Part Two: What’s it Like to Be … ? TEN Children in the Family ELEVEN The Smudged Years TWELVE Faith, Hope, and Love
Epilogue
  Notes   Appendices   Resources  
Preface to the Paperback Edition
I had no idea when I wrote A Return Journey that ten years later I would be reenacting the Alzheimer’s scene and experiencing dementia yet again. At eighty-five, this is Act III of my life, and I dreamed of a more satisfying ending than to spend my last days once again dealing with this human misery.
A Return Journey was the result of the healing process I went through following my mother’s death from Alzheimer’s. The writing of this book, as well as the connections I made with other caregivers and the research I conducted after my mother’s death, helped to restore me to the person I had lost to anger and to the disease that destroyed my dear mother. Acceptance? Yes, I learned to accept the inevitable, but more than that, I learned to enjoy small things, and to leave the unanswerable decisions to a higher power. I learned to forgive myself for the anger and frustration I felt, and continue to feel from time to time. I began to understand grief more intimately and learned to forgive myself for my imperfections in caregiving which, I think, has helped me forgive others who are also human.
Regardless of my dreams of a lilting coda to my life, in 2012 my husband of sixty years started showing signs of change. Yes, change is the best way to describe what happens when one develops dementia, and the new person who emerges is very often not anything like the one you have lost. And you miss that lost person, dreadfully, especially if he is a husband. Losing my mother to this tragedy was bad enough, but losing a husband was still crueler.
My husband had thrived on activity—golf several times a week, fast-walking tracks with our little Boston Terrier—and had an unconditional love of life. I was accustomed to a hearty “Hey, let’s go to dinner!” or the movies, or perhaps an intriguing and extended conversation of some attention-grabbing topic.
I don’t know what caused the change, but I have long blamed two serious falls, both of which caused injury to his head. In the aftermath of these accidents, Rudy showed signs of failing (losing his way to an eye doctor appointment, difficulty calculating the tip at a restaurant), and we noticed a vagueness that settled on his personality. We’ll never know why, but what he became was a man with little ability to find his way around, limited memory of what was said a few minutes before—a sweet, uncomplaining, often non-attending person, content to sit all day and watch TV.
Let me give you an example of my husband of today. He has frequent sports talks with a friend named Jim. Recently when I mentioned something Jim had told me, Rudy asked, “Who’s Jim? Do I know him?” He had not connected a name with this long-time friend. Later we ran into Jim and I told Rudy, “Now that’s Jim.” Two days later he said, “Now tell me, who is this Jim?” It is often like living in a record that gets stuck in a groove. We exist in a world of repetition.
Yet, there are times when our conversations are as normal as any. I just never know what he will remember. His favorite topic of discussion is his time in the army in the 1950s. I don’t understand why, because he hated the army and was happy to return to civilian life. So why this is indelibly etched in his failing mind is inexplicable.
I often wonder why life has been so unfair, for dementia to visit me again—forcing me to think for another, because that is the most difficult task a caregiver has. I have to think for both of us, plan everything, take charge of both our lives, and still try to exhibit patience and fortitude.
It’s easy to get mired in self-pity, but when I look more deeply and ask myself what this challenge has done for me, not to me, amazingly I realize that I am a deeper, better person than I was before dementia entered our lives. I have learned to see the beauty in this new man I am married to: he gives me a childlike smile and I love him. He walks up behind me and touches my shoulder and says, “I love you,” and I melt.
So I still have a lot to hold onto. I have love and I’m working to reinvent my life. I have developed my own interests and have come more into my own, rather than waiting for another to direct my thoughts and activities. I have become the dreamer of personal dreams, and it has become a productive and rich experience.
Sadly, little has been found in research to attack dementia, but help will be found. However, we who live with the Big D daily have developed our own tactics, and I am happy to say that my husband has not become significantly more demented in the three years we have lived in our new senior home. Why, I wonder?
I attribute a lot of this to socialization. He loves going to meals and the servers love him. He has a joke and old stories for them and dearly loves the chocolate ice cream they serve. I wonder sometimes if it is the chocolate that keeps him going. He sleeps much better than I do, for he does not worry, and his world is not threatening or demanding. I ask him to do certain chores: take out the trash, put away the laundry, and bring in the morning paper, to name a few. It is a simple life, but is still loving and rich for the two of us. Luckily he doesn’t wander, for if that should begin we would have to make other arrangements for his care.
I am able to leave him, but I have set a limit on my time away. I always tell him how long I will be gone, and I try not to be away more than two hours. I leave the building to go to the store and I leave him for medical reasons, or an occasional shopping spree with my daughter, but seldom for anything else. Yes, it is a simple life, and yet we have a share of happiness and peace with life in our eighties.
That said, we really don’t know what plagues my husband. In spite of the many advances in neuroscience, the brain is still terra incognita , and I find myself hypervigilant to every memory lapse, every confused moment, wondering whether his befuddlement is a sign that he is slipping further away. Unhappily I have to admit that I see subtle changes, and when this happens I cringe, and I cry.
If you are reading this because someone you love has Alzheimer’s or another form of dementia, know that my heart is with you. The leaching of self that occurs … well, it’s agony to watch. Forgive all—yourself, your loved one, fate, God, everything. Find love and solace in the smiles and sparks of humor. Fe