Coming Home

A Practical and Compassionate Guide to Caring

for a Dying Loved One

Deborah Duda
 INTRODUCTION

Some thirty years ago, I was wandering around the world,

looking outside myself for some teacher or teaching to help
me understand what my life was all about. I decided to return
to the clarity I remembered feeling while hiking through a
small 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 a
house. The next day, two Tibetan women carried my bags up
the mountain trails to the tiny mud house we had found, and
I set up housekeeping. I quit trying to figure it all out and just
lived contentedly with the villagers, taking photographs and
recording the sounds and music of village life.
After a few weeks, I began to have nightmares that I or
someone 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. That night, I dreamed about her.
The 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 on
the streets (hriday is Sanskrit for “heart”).
By the time I arrived in Calcutta, I was so sick with
dysentery and worms that getting out of bed to call Mother
Teresa was a great effort. I dragged myself to a public telephone
booth in a steamy Calcutta street, picked up the phone, and
dialed 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 and
asked 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 months
in one of your homes for the dying?”
“No, my child,” she said. “Go home. There is sadness
and suffering right around you at home.”
Then, 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 in
myself. 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 two
friends I loved very much were cared for at home until they
died. Then I worked with terminally ill patients and their
families at our local hospital, and with some who chose to
die 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. That made me feel afraid or angry, so I
feigned indifference. As a teenager, I had seen only one living
thing die—a gray squirrel on a country road. I shuddered as
I 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 three
days, I kept off the road, trying to figure out where this death
fit 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’t
see 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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 Introduction

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 isolated
because fear kept friends from talking with her about the most
important thing happening in her life: her dying.
Then I was angry, truly angry. My anger was born from
awareness of my own ignorance and fear. I felt cheated. Most
of 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, loved
ones’ 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. The 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 all
of life.
This book grew from a sense of our wholeness (holi-
ness). It covers the practical information needed to help
alleviate many of our fears. “Practical” includes not only the
“what to do” and “how to do it” of physical care, but also
mental, emotional, and spiritual support. Once the needs
for comfort and relief from pain are met, spiritual food can
be more nourishing than a glass of carrot juice or a ham-
burger. Supporting a home dying is an opportunity to learn
that spiritual support can be practical, and physical care can
be spiritual.
This book, then, is a synthesis of my psychological and
spiritual 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

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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 and
approach to death, may be different. Use this book as a tool
to 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 do
this only if we trust ourselves. Sometimes seeing ideas in print
convinces 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 or
inspiration. You’re the only expert on your reality. The appro-
priate way to support someone who is dying is the way the
dying person and you choose. And if some of your choices
are different 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 from
the body, and death is the moment of withdrawal. We often
hear that life and death are opposites. To me, the opposites are
birth 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 change
in 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.

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 Introduction

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. Both
affect the quality of the time we have, and the latter may affect
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 longer
feel separate from each other and from life; we experience the
underlying unity of everything.
Love transforms fear. Caring for a dying person is an
opportunity to increase our capacity to love by decreasing our
fear. Within each of us is love, someone to love, and someone
to love us. But fear keeps hearts closed, which prevents us
from experiencing this. Fear prevents surrendering and makes
us feel separate and alone.
Fear projects awful things that may happen, especially
while someone is dying. I’ve never encountered anything
awful in all the home dyings I’ve been involved with. Before I
worked with dying people, I seemed to be the ideal candidate
for not being able to handle dying. I had a long history of
passing out in health class, at the sight of blood, or just when
visiting a friend in the hospital. I was terrified each time I got
a shot, and on more than one occasion, I threw up in reaction
to someone near me vomiting.
But then I realized that to be afraid of death is to be
afraid of life. This 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

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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 more
insecurity and fear. And do we really want it anyway? Maxi-
mum security is prison, not life. We break the circle of fear and
insecurity when we live each moment as it comes. You can live
in 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. The 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 helped
me accept death. I accept that at any point in time, a process
is 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 their
projects aren’t complete, but who we are is not our unfinished
work, projects, or goals. The purpose of goals is just to give us
a sense of direction.
When life is seen as a process and not as a goal, death
loses much of its sting. As Chief Crazy Horse said, “Today is a
good day to die, for all the things of my life are here.”
Dying, like living, has its share of sadness and joy. The
sadness of letting go of a person we love is tempered if we
remember to hold everyone lightly, knowing they are “just
on loan.” When someone we love is dying, we tend to focus
on 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 one
content, of touching timelessness, of feeling connected with
all of life.
If we live each moment of each day fully, we transcend
time. Each moment then becomes an eternity, and we have

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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 experience
a beautiful time in your life. And perhaps, if you allow joy
into this experience, you will be surprised how often it erases
emotional pain.
The increased love and compassion we can learn while
caring 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. There’s
been 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 ones
needed for living fully: love, compassion, courage, serenity,
patience, humor, humility, and the will to let others live or
die as they choose, as long as they take responsibility for their
choices. 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 given
away. One way to take responsibility is to stop playing victim
to 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 people
and things we love: the kids, the dog, the garden, our favorite
chair.
As you live this dying, be gentle with yourself and love
yourself. There’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

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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 is
such a thing as a “sick person”—only people with imbalances
between 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’s
experience is separate from ours. Our experiences aren’t sepa-
rate. We aren’t separate.

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