A Journey of One: Hospice: Healing and Teaching by Storytelling

By A.L. Cromwell RN

We can never truly prepare for death. But knowing how it has looked for others and what they have experienced can provide comfort and reassurance if you are caring for an ill loved one.

Leigh Cromwell, MS, BSN, RN draws upon her experiences and accounts from hospice providers and caregivers to reveal what to expect while walking with someone on their final journey. With this resource, the author shares:

what to expect when taking care of a loved one;

how to navigate through difficult adjustment periods;

what your loved one may be experiencing.

Throughout the book, you’ll read about people who have been diagnosed with debilitating illnesses and those who care for them. While reading, it will become clear that the journey of hospice starts much earlier than just the last days of life. Some of the stories will surprise you – others will heal and inspire you.

Whether your loved one suffers from Alzheimer’s dementia, heart disease, lung disorders, cancer, or some other end-stage illness, and regardless of whether hospice is here or on the horizon, this book is a necessity for anyone caring for an ill loved one in the home.

• Language: English
• Publisher: WestBow Press
• Release date: Dec 20, 2019
• ISBN: 9781973678212

A.L. Cromwell RN

Leigh Cromwell, MS, BSN, RN lives near Memphis, Tennessee, and has been a nurse for thirty-five years. Her great loves are her husband, Kyle, her two children, and her medical mission work

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Copyright © 2019 A.L. Cromwell, RN.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

WestBow Press

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THE HOLY BIBLE, NEW INTERNATIONAL VERSION®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

ISBN: 978-1-9736-7822-9 (sc)

ISBN: 978-1-9736-7823-6 (hc)

ISBN: 978-1-9736-7821-2 (e)

Library of Congress Control Number: 2019917260

WestBow Press rev. date: 12/10/2019

Lovingly dedicated to

the concept of hospice

and the care of the terminally ill in a family care setting,

and to those in the grind who make it happen.

Also dedicated to my father, Dr. C. Phil Cheatham, who, in his never-ending thirst for understanding of God and life, lovingly and without fear shared with me his thoughts and dying experiences as they were occurring. I love you, Dad. I’m passing it on.

CONTENTS

Note to the Reader How to Read This Book

Acknowledgments

A Journey of One: For the Caregiver

What Is Hospice?

Note from the Author

Chapter 1: Henry’s Journey

Questions for Reflection

Chapter 2: Tracy’s Journey

Questions for Reflection

Chapter 3: Jon’s Journey

Questions for Reflection

Chapter 4: Martina’s Journey

Questions for Reflection

Chapter 5: Zoe’s Journey

Questions for Reflection

Chapter 6: The Loved One

Dream Vision: What It’s Like for Me

Questions for Reflection

References

Family Calendar

Palliative Performance Scale (PPS)

Karnofsky Performance Status (KPS)

FAST Scale: Functional Assessment Staging Tool for Dementia

Sharing the Gospel Story with Your Loved One

Life Review with Your Loved One

NOTE TO THE READER

HOW TO READ THIS BOOK

This book is written to give practical advice to those caring for an ill loved one, with the additional purpose of beginning the healing process for those of us left behind. But sometimes the pain is too fresh or the time is just not right. Most will find this a book to be visited and revisited, rather than to be read through in a single sitting. If sadness overflows, set the book down and visit with your memories. There is much greater healing in this action than in the reading of a book.

Suggestions for Reading

• Skim the text box topics to find the information that you need right now.

• Answer the Questions for Reflection to break the ice.

• Read only the chapter that pertains to your loved one’s diagnosis.

• Skip to chapters 5 and 6 if you are feeling emotionally overwhelmed.

• If it hurts more than helps, set it down! Pick it up again later after some healing time has passed.

ACKNOWLEDGMENTS

A beloved thank-you to my husband, Kyle, who shows me daily how to love and honor God, keeps us focused on the bigger picture, and makes my life spark.

To my children, Elizabeth and Steven, you complete my life, and you are my joy.

To my brother and sister, Chuck and Lauren, who always support me in every endeavor; you have taught me everything about how a family can pull together in the hard times.

To my deceased mother and brothers, Adrienne, Phil Jr. and Ben, your struggles and victories are woven within these pages.

To the following specialists who helped me hone and explain the concepts of hospice:

Eric D. Blakney, MD, HMPC, Board Certified in Internal Medicine, Certified in Hospice and Palliative Care Medicine, Hospice Medical Director Certified

R. James Burnett, DO, Board Certified in Family Medicine, Certified in Addictive Diseases by the American Society of Addiction Medicine (ASAM), Retired

Frank Calder, PharmD, Retired

Sam Shaw, Jr., DMin, MDiv, Pastor

Michelle Tipton, RN, Hospice Director of Operations

Gosta Turman, RN, Hospice Clinical Manager

Nancy Hoover, CPNP, APRN, RN, CLC

Mary Beth Miller, RN

Terri Steward, MSN, RN

AnnieLaurie Walters, Communications Consultant

To the Memphis hospice team, you are not just my coworkers, you are my heroes.

A special thank-you to Zoe and her family, who came into my life at a critical time in the writing of this book. Their willingness to share their hearts, their pain, and their lives with me helped define the mission of this book.

A JOURNEY OF ONE

FOR THE CAREGIVER

Hospice is a word associated with darkened rooms and deathbeds, nun-like nurses, and sorrowful mourners at closed doors. It’s a word that means I am so sorry and I suppose it won’t be long now. Death is disquieting, even for those of us who make our living accompanying it from door to door. But death is frequently misinterpreted, as I hope you will discover through these stories. It is not an end, but a destination, a journey down a singular road, right to the face of God. And the body knows how to get there. Since its birth, it has been preprogrammed for this. There is a process, a predictability. Yet the last breath of this earth, the cessation of life in a loved one, still comes as a surprise to us. Apparently, we can never truly prepare for it. Knowing how it has looked for others and what they have experienced along the way, however, may provide some comfort and reassurance for you and for your loved one, as you accompany him or her on the pilgrimage: the journey of one.

This book has been compiled from many hospice experiences and from many hospice providers and caregivers. It is not meant to give medical advice nor give direction as to how your hospice agency should perform its duties in the care of your loved one. Its purpose is only to share a few stories with you, with the hope that you will not feel alone at this difficult time. Caring for another on this road is one of the greatest honors that a loved one can bestow—the ultimate sacrifice of your time for theirs. These stories are written in honor of all caregivers who have essentially contracted with their loved ones to walk alongside them during their dying process. It is a relationship of new depth, one that is usually reserved for impersonal hospital rooms, fluorescent lighting, and uniformed strangers. Hospice in the home can be a difficult undertaking, sometimes for the dying and always for the caregiving. Your story will have long-term value, however. You will discover this value in your day-by-day walk, and it will come back to you again when you see others start the journey with their loved ones, simply because you walked it first.

It’s a lost art, dying at home. Since the dissolution of the multifamily home, death has become an institutional process. But not too long ago, caring for a relative or neighbor who was passing from this world to the next was a family event. The conversations may have been hushed and sorrowful, but everyone was involved in the care, even small children, who learned to bring a cup of water or an extra blanket. These children, now the baby boomers, are approaching their later years, and this has created a change in the concept of hospice. It is no longer for the last days or weeks of a person’s life, and it doesn’t have to mean, Oh, I’m so sorry. Some recipients of hospice are still employed at their jobs. Others are placed on hospice and then improve, having been chronically ill rather than terminally ill. Some who start out at home are eventually placed in nursing homes or hospice facilities. There are many hospice stories that may surprise you, and many that will heal or inspire you. Come join us on our journey of care, helping others to walk their journey of one.

WHAT IS HOSPICE?

Hospice refers to the care of the terminally ill in a family-centered setting. It may occur in a home or in a facility, depending on family preference and resources. Hospice care is covered by most insurances and includes physician services, nursing services, equipment, supplies, and basic medications related to comfort. It also offers aide, chaplain, and social work support. Some hospice agencies provide volunteer services, and all have access to dietary counseling and short-term physical and occupational therapy. Short-term inpatient and respite care are also available, as well as long-term bereavement services for the caregivers and family. The purpose of hospice is to provide comfort and dignity for the patient and to promote quality of life through the very end of life. Family, quality of life, and terminal illness do not seem like mutual companions, but as many have discovered, they truly can be intertwined. Where quantity and longevity diminish, quality flourishes.

You are about to enter a world of new concepts. Each day will bring a new and sometimes difficult conversation. There will be more losses than gains. There are moments of awkwardness and times when obstacles cannot be overcome. There is an inherent element of trauma bonding. There are no clear paths or maps available, only a vague trail marked with suggestions and encouragements from others: This has worked for some or Let’s try this other for a while. Sometimes you will be at an absolute loss and can only sit down next to your loved one and wait for something different to happen. You will learn that most issues cannot be fixed and that many expectations will not be met. There may be few days when you don’t fall into bed exhausted, frustrated, and feeling helpless. This will be a full-time but temporary job. Just as birthing a baby into this world is not an easy task, assisting with the passing of a human into the next world is the same. Both come with pain and reward. May this book bring you the courage to venture on this path and embrace this journey together—you, your loved one, your family, and your hospice team.

NOTE FROM THE AUTHOR

I expect that this will be a small-audience book. But for those who read its pages and have committed to sharing in the care of their loved one’s final days, you are my heroes. For some, it will be a natural undertaking. You’ve seen it before, or perhaps you have been blessed with the inherent gift of caregiving. For others, the struggle will be a difficult one. Do I wish for you that this will be an abbreviated struggle? In a way, yes. Losing a loved one is often the hardest event of an entire lifetime, and there are never enough days with them—never. But if this life is the vapor and the next life is the true life, might we amend our desire to hold them on the path and instead bless them on it? The timing, anyway, is apparently not ours to appoint.

Why tell hospice stories?

When my children were young, I weighed the option of homeschooling them during their critical foundational years. I purchased a curriculum and scoured the proposed schedule and teaching points, but I could not extract from these what a real day would look like. The responsibility seemed daunting. Did I have what it would take to fill the shoes? It was my sister-in-law who affirmed for me that I could indeed homeschool. She tutored me not by lecture or review but by simply telling me the stories of her own homeschooling experiences. We shared many glasses of iced tea that summer, talking while our children played, and by the end of it, I was ready to teach. I felt like a homeschool teacher, simply from hearing her stories. I didn’t do it perfectly—just ask my children. But together we accomplished it, usually muddling, often plodding, sometimes inspired. And we were wonderfully blessed by the journey together. After a few years, my children returned to traditional school, and I returned to my nursing job. Our homeschool path had been a full-time but temporary endeavor.

This collection of hospice stories is designed to teach by storytelling. Or if your loved one has already passed, perhaps it will give you