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Coming HomeA Practical and Compassionate Guide to Caring

for a Dying Loved One

Deborah Duda



Coming Home: A Practical and Compassionate Guide to Caring for aDying Loved OnePublished by Synergy Books

P.O. Box 30071 Austin, Texas 78755

For more information about our books, please write us, e-mail us [email protected], or visit our web site at www.synergybooks.net.

Printed and bound in Canada. All rights reserved. is book may bequoted up to one full page without written permission, provided creditis given, including the name of this book and the author.

e text of this book is printed on 100% post-consumer recycled paper.

Publisher’s Cataloging-in-Publication(Provided by Quality Books, Inc.)

Duda, Deborah.Coming home : a practical and compassionate guide to

caring for a dying loved one / Deborah Duda.p. cm.Includes bibliographical references.LCCN 2010925622ISBN-13: 978-0-9842358-9-6ISBN-10: 0-9842358-9-2

1. Terminally ill--Home care. 2. Terminal care.3. Death--Psychological aspects. 4. Caregivers.5. Hospice care. I. Title.

R726.8.D856 2010 649.8QBI10-600082

Copyright© 2010 by Deborah Duda

Author photo by omas Grollman, MD

Four brief quotes concerning an executor’s legal responsibilities from LAW FOR THE LAYMAN by GEORGE G. COUGHLIN. Copyright (c)1963, 1967 by Barnes and Noble. Copyright (co) 1975 by George Gor-don Coughlin. Reprinted by permission of HarperCollins Publishers.

e author has made every attempt to establish copyright ownership. If the author has inadvertently not given credit to copyrighted material,please advise the author and credit will be included in the next printing.

10 9 8 7 6 5 4 3 2 1



To Eve Muir, my friend and family,

who made this book possible, and to

all the people who have had the love

and courage to care for their dyingloved ones at home.





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TABLE OF CONTENTS

AUTHOR’S NOTE ......................................................... xiiiPREFACE TO THE NEW EDITION ............................ xv INTRODUCTION ......................................................... xix

Chapter 1:

THREE EXPERIENCES WITH DYING AT HOME ... 1 John .................................................................... 1Mary ................................................................... 12Dad ..................................................................... 25

Chapter 2:MOM’S STORY .......................................................... 43

Chapter 3:

MAKING THE DECISION TO DIE AT HOME ........ 53 What Are the Advantages of Dying at Home? ..... 57

When Is It Not Appropriate to Die at Home? ..... 58Making the Decision ........................................... 59Financial Considerations ..................................... 66

Chapter 4:

SOURCES OF HELP .................................................. 71Family and Friends .............................................. 71

Medical and Home Care Help ............................. 73Hospices .......................................................... 73Visiting Nurses ................................................ 74Home Health Care Aides ................................ 75

Eldercare ......................................................... 75Hospitals ......................................................... 75Social Security ................................................. 76Medicaid ......................................................... 78



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Veterans Administration .................................. 78Legal Help ........................................................... 80

Legal Aid Services ............................................ 80State Boards of Health, Medical Examiners,

County Coroners ............................................. 80Medical Supplies ................................................. 80

Rental Services ................................................. 80 American Cancer Society ................................. 81

Counselors .......................................................... 81

Spiritual Support ................................................. 82

Churches and Synagogues ................................ 82Emergency Support ............................................. 82

Fire Departments and Emergency MedicalServices (EMS) ................................................ 82 Ambulances ..................................................... 83

Chapter 5:GETTING ON WITH IT: PREPARATIONS AND

HOMECOMING ....................................................... 85 What Do We Need? ............................................. 86

Finding a Doctor ................................................. 88Moving from Hospital to Home .......................... 89e Homecoming ................................................ 90

Chapter 6:

MEDICAL CONSIDERATIONS ................................ 93

When to Call a Doctor or Nurse ......................... 93

Working with a Doctor ........................................ 95Physical Pain and Pain Relievers .......................... 98

Commonly Used Medical Abbreviations ......... 103 Alternatives to Medically Approved Pain

Medications ......................................................... 104Shots or Injections ............................................... 106

Preparing and Giving an Intramuscular Injection .. 107



ix

IVs and Dehydration ........................................... 110Skin Care and Bedsores ....................................... 111

Elimination and Incontinence ............................. 113Catheters ......................................................... 113

Constipation ................................................... 113Diarrhea .......................................................... 115

Insomnia ............................................................. 116Fever .................................................................... 116Depression ........................................................... 117

Dementia or Irrationality ..................................... 117

Chapter 7:

BEING WITH SOMEONE WHO IS DYING ............. 121Elisabeth Kübler-Ross’s Stages of Dying ............... 121

Denial and Isolation ........................................ 121

Anger ............................................................... 122Bargaining ....................................................... 123Depression ....................................................... 123

Acceptance ....................................................... 123Telling Someone ey May Die ........................... 124

Being with Someone Who Is Dying ..................... 126e Dying Person’s Bill of Rights ......................... 131e Search for Meaning ....................................... 133Grieving ............................................................... 136Pacing Yourself, Family Health, and Morale ......... 137Sharing ................................................................ 140

Visitors ................................................................ 142Chapter 8:

CHILDREN ................................................................ 147Children as Members of the Family ...................... 147

To Parents of Dying Children .............................. 152Notes on Dying Children .................................... 158Marriage and Partnerships ................................... 161

How to Care for a Dying Loved One



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Chapter 9:

MAKING THE SENSES COMFORTABLE: PRACTICAL

HOME CARE ............................................................. 165Touch .................................................................. 166

Massage ........................................................... 166Hugging, Holding, and Cuddling .................... 168Moving a Person Who Needs Help ................. 169Hospital Beds .................................................. 173 Wheelchairs .................................................... 173

Memory Foam, Sheepskins, and Pillows ........... 174

Smell .................................................................... 175Cleanliness ...................................................... 175Bathing and Changing .................................... 176Hair ................................................................. 177Teeth ............................................................... 178

Elimination ..................................................... 178Bedpans ........................................................... 179Changing Sheets .............................................. 180

Sight .................................................................... 182Beauty .............................................................. 182Color ............................................................... 182

Television ........................................................ 184Hearing ............................................................... 184

Sound .............................................................. 184Music .............................................................. 185Reading to Someone ........................................ 186

Taste .................................................................... 186Diet ................................................................. 187

Chapter 10:

LIVING FULLY WITH DYING: OUR FEELINGS ...... 191Hope ................................................................... 192

Love ..................................................................... 194Compassion ......................................................... 198



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Faith .................................................................... 199 Joy ....................................................................... 201

Guilt .................................................................... 202Humor ................................................................ 206

Anger ................................................................... 208Fear ...................................................................... 210Emotional Pain and Suff ering .............................. 214

Chapter 11:

LEGAL CONSIDERATIONS ..................................... 219 Advance Directives, Living Wills, and Health CareProxies ................................................................. 220 Wills .................................................................... 223Valid Wills ........................................................... 225Holographic Wills ............................................... 226

No Will ............................................................... 226e Executor or Personal Representative .............. 227Probate ................................................................ 228

Taxes .................................................................... 230Body Donations .................................................. 231

Chapter 12:HEALING .................................................................. 235

Energy Work ....................................................... 242Laws for Healing ................................................. 243

A Guided Meditation .......................................... 245

Chapter 13:

PREPARATION FOR DEATH AND AFTERWARD .... 249Signs of Imminent Death ..................................... 249Being with Someone the Last Few Days ............... 253

A Practice Meditation for Leaving the Body ......... 254e Moment of Death ......................................... 256Immediately After Death ..................................... 257Laying Out the Body ........................................... 257

How to Care for a Dying Loved One



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Getting a Death Certificate .................................. 258 Advising Relatives and Friends ............................. 259

A Checklist of ings to Do ................................ 259

Chapter 14:PLANNING A BURIAL AND SERVICE ..................... 263

To Dispose of a Cocoon ....................................... 265Cremation ....................................................... 266Earth Burial ..................................................... 268

Funeral Homes .................................................... 269Green Burials ....................................................... 271Bequeathal of the Body ........................................ 272Rituals and Celebrations ...................................... 272

Working with Clergy ....................................... 274

What to Wear .................................................. 274 A Life Celebration to Share Later ......................... 275Celebrating My Mother’s Life .............................. 276

Chapter 15:

GRIEVING ................................................................. 281Chapter 16:LIFE AFTER DEATH.................................................. 289

IF YOU WANT TO HELP ............................................... 301

ACKNOWLEDGMENTS ............................................... 302

APPENDIX A: HOSPICE PHYSICIAN’S STANDING

ORDERS SAMPLE FORM ............................................. 303

APPENDIX B: SAMPLE ADVANCE DIRECTIVE ....... 306 APPENDIX C: USEFUL RESOURCES .......................... 308

APPENDIX D: WRITING YOUR CHILD’S STORY ... 311

BIBLIOGRAPHY ............................................................. 313

NOTES ............................................................................. 317



xiii

AUTHOR’S NOTE

e medical, health, and supportive procedures in this book are based on the training, personal experiences, and researchof the author, and on recommendations of responsible medi-cal and nursing sources. But because each person and situationis unique, the author and publisher urge the reader to check with a qualified health professional before using any proce-

dure where there is any question as to its appropriateness.Because some risks may be involved, the author and

publisher assume no responsibility for any adverse eff ects orconsequences resulting from the use of any of the suggestions,preparations, or procedures in this book. Please do not use thebook if you are unwilling to assume those risks. Feel free to

consult a physician or other qualified health professional. It isa sign of wisdom, not timidity or cowardice, to seek a secondor third opinion.





xv

PREFACE TO THE

NEW EDITION

Coming Home was first published in 1981, followed by second

and third editions in 1984 and 1987. e possibility of a new

edition prompted me to review how far Americans have come

in how we think about dying and how we care for people who

are dying. When I first became involved with death and dying

in the late 1970s, there were two hospices in America: the

Connecticut Hospice inspired by Dame Cicely Saunders,

the English founder of the modern hospice movement,

and the Hospice of Marin, in California. Dr. Elisabeth

Kübler-Ross, whom I consider a mentor, was a crusader

for humanizing how we as a society treated the dying. Her

classic book On Death and Dying stood almost alone onthe subject.

Now, in 2010, there are more than 4,850 hospices in

America. Hospice care is within the reach of most Ameri-cans and has been covered by Medicare and Medicaid since1982.

In those early days in the seventies, I’d never heard thephrase “palliative care,” or its other name, “comfort care.” e

palliative care movement has grown out of the holistic healthcare movement and the hospice movement. It addresses symp-toms, pain control, and the spiritual and psychosocial needsof patients and their families, extending the hospice concept

of patient care to all people facing medical challenges. Pallia-tive care is about making the practice of medicine kinder, andkindness is a joy wherever we find it. As the Dalai Lama said,“Kindness is my religion.”



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Now there are over five hundred palliative care units inU.S. hospitals. Young doctors study “comfort care” in medical

school and carry its ideas and practices into whatever field of medicine they choose. I hope it won’t be too long before there

is a board-certified specialty in palliative care. We’ve come a long way. Yet while most Americans

say they would like to die at home, 50 percent die in hos-pitals. According to National Hospice and Palliative CareOrganization statistics, only 38 percent of all U.S. deaths

happened under a hospice program, and the remainder

occurred in nursing homes.1 e dying who enter a hos-pice program do so, on average, within the last ten days of their earthly lives.

If they entered a hospice program earlier and used allthe hospice’s skills for pain control, comfort, and emotional

and spiritual support, they and their families might share amore healing, peaceful journey. But entering a hospice pro-gram is an acknowledgement that our loved one is dying, and we still find admitting that very difficult. Somewhat surpris-ingly, a study in the Journal of Pain and Symptom Management reported that hospice patients live, on average, twenty-nine

days longer than non-hospice patients.2

In 2008, the American Association of Retired People(AARP) reported that 94 million Americans were in thefifty-plus age group.3 A huge number of us will face dyingsooner rather than later, and we’ll have to make choicesabout what we want and what we don’t want.

What is called end-of-life care is not only a personalissue, but also a pressing social, economic, and politicalissue for the United States. In 2008, 25 to 30 percent of Medicare expenditures were spent on care for patients’ lastyear of earthly life. e price tag was one hundred billion

dollars. How much of this was used for meaningful care

to improve the quality of life, and how much was used to



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prolong the lives of people who might not have wantedthe care if they had fully understood their choices? Clearly,

unless we take more responsibility for dying, the finalmedical expenditures made on our behalf could bankrupt

Medicare. As I reviewed the earlier editions of Coming Home, I

noticed that it had a scrappy crusader tone in many placesthat no longer seems necessary or appropriate. When I wrotethe earlier editions, it seemed like I, and the many others

concerned about quality of life, had to fight for the humane

treatment of dying people. erefore, in the new edition,I’ve not only updated all the information but also adjustedthe book’s tone to reflect my and society’s maturing attitudestoward death and dying.

e earlier editions of Coming Home share stories of the

deaths of two very close friends and my father. Since then, my mother had a quietly remarkable death, the memory of whichconsistently brings a smile to my face and heart. In consider-ing all the work necessary to update and republish Coming Home, I decided that if I could help even a few families to

have an uplifting memory of the death of someone they loveddearly, the work would be worthwhile.

So here we go! Bless you and your family on your jour-ney. I imagine myself sitting at the kitchen table with you,cheering you on and learning with you.

Aloha,Deborah Duda

Preface to the New Edition



In the Beginning there was Life. And Life seemed

to be without form. It was indistinguishable. So

Death was created to give form to Life. And then

people began to become attached to Life and to

see Death as the enemy. In some places people saw

Life as the enemy, the place of su ff ering, and

Death as the friend.

And now we come to a place where we see

that both are One.

So those of us who made an enemy of Death must

make of Death a friend. And those who made an

enemy of Life must make of Life a friend.



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INTRODUCTION

Some thirty years ago, I was wandering around the world,looking outside myself for some teacher or teaching to helpme understand what my life was all about. I decided to returnto the clarity I remembered feeling while hiking through asmall village at the foot of Mount Machapuchare in Nepal.

In Pokhara, I found a Sherpa guide who volunteered to

act as an interpreter and go with me to the village to find ahouse. e next day, two Tibetan women carried my bags upthe mountain trails to the tiny mud house we had found, andI set up housekeeping. I quit trying to figure it all out and justlived contentedly with the villagers, taking photographs andrecording the sounds and music of village life.

After a few weeks, I began to have nightmares that I orsomeone in my family was dying. Each day, I was afraid of what the next night might bring. One day a few months later,a Sherpa stopped by with a Valentine’s Day card from my par-ents and a copy of Newsweek magazine with Mother Teresa’s

picture on the cover. at night, I dreamed about her.e next morning, I decided the only way to overcome

my fear of death was to put myself in the middle of it. I would

go to Calcutta and ask Mother Teresa if I could work in a hri-day house, one of the homes she created for people dying onthe streets (hriday is Sanskrit for “heart”).

By the time I arrived in Calcutta, I was so sick withdysentery and worms that getting out of bed to call MotherTeresa was a great eff ort. I dragged myself to a public telephonebooth in a steamy Calcutta street, picked up the phone, anddialed the operator. I told the operator that I wanted to speak

with Mother Teresa. In a few minutes, she was on the phone.



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I found her easy to talk with. I told her about my dreams andasked if I could see her. Very lovingly, she said, “Come right

over, my child.”I dragged myself to the main convent in Calcutta and

asked her my crucial question: “Can I work for a few monthsin one of your homes for the dying?”

“No, my child,” she said. “Go home. ere is sadnessand suff ering right around you at home.”

en, feeling desperate and lonely, I asked, “Can I adopt

a child from the orphanage?”

Again she answered, “No, my child. Go home and work with the sadness and loneliness around you.”

And I did—first with the fear, sadness, and loneliness inmyself. And the key has been hriday— the heart—and trans-forming the fear that keeps hearts closed.

I began writing the first edition of this book after twofriends I loved very much were cared for at home until they died. en I worked with terminally ill patients and theirfamilies at our local hospital, and with some who chose todie at home. While I was working on the final edit, my father

died at home.Before the deaths of my two friends, when I thought of

dying, I felt stupid. at made me feel afraid or angry, so Ifeigned indiff erence. As a teenager, I had seen only one livingthing die—a gray squirrel on a country road. I shuddered asI watched its death dance in the rearview mirror. Death on

a public road! It was out of place—unnatural, even! Every-one knows animals go away to die in hidden places. For threedays, I kept off the road, trying to figure out where this deathfit into the scheme of things. Later in life, I shot a few deer,but I blanked that out. I saw my grandfather dead, but I didn’tsee how he got that way.

Not until I was past thirty did I really become aware that

people were dying around me all the time, that I was dying all



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the time—parts of me, old cells, old ideas, old ways of being.Death was hidden in hospitals, in statistics, in a compartment

of my being I didn’t open. I saw a friend lonely and isolatedbecause fear kept friends from talking with her about the most

important thing happening in her life: her dying.en I was angry, truly angry. My anger was born from

awareness of my own ignorance and fear. I felt cheated. Mostof us are cheated out of the fullness of life by fear and embar-rassment. We experience the pain and joy of birth and life,

but many of us deny ourselves our deaths, the closure of a

circle. Denial comes from fear: our fear, doctors’ fear, lovedones’ fear, our whole culture’s fear.

As I began to accept dying and death as part of my life,my fear was transformed into love, my anger into compas-sion, my depression into joy. e quality of my relationships

with myself and with others improved. Now, after working with dying people and experiencing the deaths and rebirths within myself, I feel more profoundly my kinship with allof life.

is book grew from a sense of our wholeness (holi-

ness). It covers the practical information needed to helpalleviate many of our fears. “Practical” includes not only the“what to do” and “how to do it” of physical care, but alsomental, emotional, and spiritual support. Once the needsfor comfort and relief from pain are met, spiritual food canbe more nourishing than a glass of carrot juice or a ham-

burger. Supporting a home dying is an opportunity to learnthat spiritual support can be practical, and physical care canbe spiritual.

is book, then, is a synthesis of my psychological andspiritual understandings and the basic information on physi-cal care needed to support someone who lives at home until

he or she dies. It includes things to keep in mind when a loved

one is deciding where to die, and, if home is the choice, what

Introduction



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xxii

you can do about family morale, pacing yourself, pain relief,interacting with doctors, giving injections, taking care of your

feelings, and so on. Although the book is directed principally to the family and friends of the dying person, much of it can

be shared with the dying person as well.I share with you my reality, my vision, at this time in my

life. Your reality, including your spiritual understanding andapproach to death, may be diff erent. Use this book as a toolto help find the answers in yourself. If I use words that are not

your words, let’s move deeper than the word level to the level

of the heart.Trust yourself. We learn by having the courage to enter

another’s reality without seeing it as a threat, and we can dothis only if we trust ourselves. Sometimes seeing ideas in printconvinces us that someone out there is an expert who knows

more than we do about our own experience. But anyone out-side of ourselves can be only a provider of information orinspiration. You’re the only expert on your reality. e appro-priate way to support someone who is dying is the way thedying person and you choose. And if some of your choices

are diff erent from the dying person’s, you can do it your way when it’s your turn.

Dying is the process of the life forces withdrawing fromthe body, and death is the moment of withdrawal. We oftenhear that life and death are opposites. To me, the opposites arebirth and death. One describes entering into form, the other

leaving form—which is which depends on your perspective.Either way, life continues without end.

In this book, dying, death, and died refer only to a changein form and do not mean “the end,” “the final disaster,” “the worst thing that could happen,” or “the uncontrollable enemy.”I see death as a friend on our way home to more life, and car-

ing for someone who is dying as an opportunity to serve as a

midwife for a soul.



xxiii

I believe that at some level of our being, we decide when we’re going to die. After that, our only choices are our attitude

about dying and, sometimes, where it will take place. Bothaff ect the quality of the time we have, and the latter may aff ect

the quantity. Accepting death is a process of surrender, of letting go

and accepting life as it is rather than as we think it should be. Exquisite beauty and meaning can be present in dying when we and the dying person accept in our hearts that life

is following its natural course, and when we cooperate with

life instead of fighting against it. When we do, we no longerfeel separate from each other and from life; we experience theunderlying unity of everything.

Love transforms fear. Caring for a dying person is anopportunity to increase our capacity to love by decreasing our

fear. Within each of us is love, someone to love, and someoneto love us. But fear keeps hearts closed, which prevents usfrom experiencing this. Fear prevents surrendering and makesus feel separate and alone.

Fear projects awful things that may happen, especially

while someone is dying. I’ve never encountered anythingawful in all the home dyings I’ve been involved with. Before I worked with dying people, I seemed to be the ideal candidatefor not being able to handle dying. I had a long history of passing out in health class, at the sight of blood, or just whenvisiting a friend in the hospital. I was terrified each time I got

a shot, and on more than one occasion, I threw up in reactionto someone near me vomiting.

But then I realized that to be afraid of death is to beafraid of life. is book is about acknowledging our fears and,at the same time, moving through them toward greater love, joy, and freedom as we experience dying.

One way our culture teaches fear of death is by making

security a goal. Total security is, of course, an illusion. Life is

Introduction



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xxiv

a process of change, and inherent in change are vulnerability and risk. At any moment, our plans for the future can disin-

tegrate. Holding on to security or chasing after it creates moreinsecurity and fear. And do we really want it anyway? Maxi-

mum security is prison, not life. We break the circle of fear andinsecurity when we live each moment as it comes. You can livein the moment right now with this dying you’re living.

Peace is possible in this moment. It’s not out there some- where in the future. e future never really comes, anyway; by

the time it gets to us, it’s the present.

Focusing on life as a process instead of a goal has helpedme accept death. I accept that at any point in time, a processis complete up until that moment. At each moment, each of us is complete and whole. No one dies before the purpose of his or her life is fulfilled, even if we cannot understand that

purpose. I believe that a child who dies young or someone who dies unexpectedly dies complete. Perhaps some of theirprojects aren’t complete, but who we are is not our unfinished work, projects, or goals. e purpose of goals is just to give usa sense of direction.

When life is seen as a process and not as a goal, deathloses much of its sting. As Chief Crazy Horse said, “Today is agood day to die, for all the things of my life are here.”

Dying, like living, has its share of sadness and joy. esadness of letting go of a person we love is tempered if weremember to hold everyone lightly, knowing they are “just

on loan.” When someone we love is dying, we tend to focuson sadness, not on joy. But it’s a choice. We can allow joy into what is often the most painful experience of our lives:the quiet joy of sharing love and caring, of seeing a loved onecontent, of touching timelessness, of feeling connected withall of life.

If we live each moment of each day fully, we transcend

time. Each moment then becomes an eternity, and we have



xxv

all the time in the universe to share with this dying person we love. It doesn’t matter how long we live, only how we live

the time we have. It’s possible to create from this experiencea beautiful time in your life. And perhaps, if you allow joy

into this experience, you will be surprised how often it erasesemotional pain.

e increased love and compassion we can learn whilecaring for someone who dies at home help us through our ini-tial loneliness. If the death has not been sudden, there’s been

time between smoothing sheets, emptying bedpans, holding

hands, and talking of what may come for grieving and resolv-ing anything we need to resolve with the dying person.ere’sbeen time to begin a gradual adjustment to earthly life with-out this person.

Because dying is living intensified, the qualities most

needed to support someone who is dying are the same onesneeded for living fully: love, compassion, courage, serenity,patience, humor, humility, and the will to let others live ordie as they choose, as long as they take responsibility for theirchoices. I know you have some of those qualities, maybe all of

them, and maybe even in great abundance.By taking responsibility for dying, we reclaim respon-

sibility for living and regain the personal power we’ve givenaway. One way to take responsibility is to stop playing victimto cultural pressure to go away quietly and die in the steril-ity of a nursing home or hospital. Who wants to be seen as a

forthcoming vacancy? We can die right here amidst the peopleand things we love: the kids, the dog, the garden, our favoritechair.

As you live this dying, be gentle with yourself and loveyourself. ere’s no need to judge yourself, blame yourself,or feel guilty. Our lives are a learning process in which we

outgrow some old thoughts and feelings as we increase in wis-

dom. Guilt about the past is a way of punishing ourselves for

Introduction



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xxvi

learning! Keep forgiving yourself for being so hard on yourself,and remember: what we’re accustomed to calling “mistakes”

are really experiences to learn from.In this book, I use the phrases “dying person,” “sick

person,” and “patient” to avoid more convoluted wording.Inherent in these phrases are notions that hold us to old pat-terns. So remember: We’re all dying. I don’t believe there issuch a thing as a “sick person”—only people with imbalancesbetween their bodies, minds, feelings, and souls. “Patient”

has an impersonal quality that denies our uniqueness and

humanness, and promotes the illusion that a dying person’sexperience is separate from ours. Our experiences aren’t sepa-rate. We aren’t separate.

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DAH Intro Only