JourneysJourneys
A newsletter to help in bereavement
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O
ver the years, as I have counseled and lectured about
caring for persons in hospice care, one of the questions
I am oen asked is “How do I talk to someone in hospice?
What can I say?”
e questions reect our own unease and
discomfort around dying and death. We just
do not know what to say. We feel we should
somehow address the situation—perhaps say
goodbye or say something meaningful—yet we
do not know how to broach the topic.
When speaking with our friends and rela-
tives who are ill, it is always important that we
remember two things. First, recognize that our needs, what-
ever they are, may not be the same as those of our ill friend
or relative. Individuals who are struggling with life-limiting
illness oen have a middle knowledge of their plight. is
means that they dri in and out of an awareness of the possi-
bility of death. Sometimes they will recognize the closeness
of death while at other times they will speak of the future as
boundless.
ese moments may change quickly. For
example, when my Dad was in hospice care, he
called a store clerk to order some Christmas gis
for the family. In that conversation, he shared
with an anonymous clerk the fact that he did not
expect to live long enough to present these gis.
Yet, that same day, he asked a nurse how long
it would be before he would once again be well enough to
drive.
e moral is that we should always follow the lead of the
T
he caregivers dilemma: How can we take care of some-
one who is dying and also take care of ourselves? We
may be so focused on giving to the one we love whose time
is limited that we sacrice our own well-being in the process.
Remember there is a dierence between giving and sacric-
ing. Sacricing ourselves is not healthy. If we don’t pay atten-
tion, our own needs may be lost along with our eectiveness
as a caregiver. Following are some suggestions for self care:
Honor Your Feelings. We need to allow and express our
feelings. Better to let out our anger or sadness than act it
out on our loved one. Take a private moment alone or call
a friend to say what we feel. Remember, feelings expressed
can begin to fade.
We must honor our own tears as they come up. ough
it may be tempting, it isn’t healthy to deny our feelings and
needs in the face of another’s needs. Denying ourselves may
cause us to burn out, or become useless or sick. An essential
“
Talking to a dying
relative or friend
is simply talking to
someone we love—
and someone who
is still alive.
”
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Realistic hope
e challenge of self-care for
the caregiver
B J T
What can I say?
B K J. D
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ill person. If we are open to the conversations, the individual
will indicate what he or she wishes to discuss. Sometimes
it may be the mundane conversations that characterize our
lives, whether it is gossip, or conversations about gardening,
home, sports or politics. Other times, the individual may
need to share fears or feelings.
When someone is ill, they begin to mourn all the losses
experienced in the course of an illness. It is not unusual for a
dying person to need to address their grief, or they may wish
to oer instructions for what should happen when they die.
ere is another thing we can talk about: one of our fears
as we face death is a sense that our life had value. We want
to know that our life counted, that it meant something to
someone, that we counted.
Reminiscence then, is a powerful tool. Together, we can
reminisce about the events witnessed, the accomplishments
achieved, the moments shared. is can be so meaningful.
In fact, there are tools such as Hospice Foundation of Amer-
ica’s Guide for Recalling and Telling Your Life Story that can
oer a structure for sharing such memories.
Many hospices may even oer opportunities to form a
moral legacy or moral will. Just as a legal will distributes a
person’s property aer death, a moral will allows individuals
to specify the values they wish others to carry, the lessons
they wish survivors to learn from their lives.
And of course, these conversations can be highly person-
al. We can talk to the dying person about how they touched
our life. We can share those special, private reminiscences,
those very personal memories. When my Dad was dying, I
told him about how much I appreciated, when I was a boy,
him coming home tired from work and still taking me to the
river, one of my favorite places, to watch the boats. I don’t
think he ever realized how signicant those moments were
to me.
Perhaps we need not wait to have those conversations.
at is the point. Talking to a dying relative or friend is
simply talking to someone we love—and someone who is
still alive.
Kenneth J. Doka, PhD, MDiv, is Senior Consultant to HFA
and a Professor of Gerontology at the College of New Rochelle
in New York.
“W
hen we decided it was time to seek hospice care for
Grandad,” Dave said, “I guess we thought it would
be the end of everything. He had already experienced a num-
ber of losses as his physical health and his mental condition
declined, and I think we assumed, almost unconsciously, that
his time in hospice would be short and the end would come
soon.”
“In a sense, we were right, because Grandad did experi-
ence some additional losses and challenges before he died,”
Kathy added. “But that wasn’t the whole story. At rst, the
care he received from the hospice team perked him up in
many ways. He seemed to have more energy, to be less bur-
dened by his disease, and to become once again the grandfa-
ther that we all knew and loved.
Grandad was admitted to a hospice inpatient facility, re-
ceived excellent care, and was able to come home for some
time. We almost couldn’t believe it when the hospice agreed
that Grandad could be discharged to his own home. ey
promised to follow him at home and to bring him back to the
inpatient facility whenever he was ready.”
Kenny admitted that there was a time when Grandad
hardly recognized him and when he found it very dicult
to visit. But when Grandad came back home under hospice
care, Kenny said he was a changed person and they were able
to have important conversations about issues that had stood
between them for many years.
Gwen agreed. “It was a precious time,” she said, “we could
tell each other about our mutual love. We even had a birth-
day party for him. And Grandad was so kind and gentle to
my children. It was almost as if in some ways he was caring
for us, rather than the other way around.”
Gwen was careful to add, “It is important not to paint
a rosy picture here. We all knew his death was near. We
couldn’t ignore the shadow that hung over us. Still, I cherish
these last opportunities we had to reengage with him and to
share treasured moments.
“Since Grandad’s death, I’ve been reading some of the re-
cent research about hospice care,” David said. “I was fascinat-
ed to learn about the evidence that this care can improve the
quality of, and could actually extend, the life of the patient
as well as provide opportunities for growth for all who are
involved. at was what we truly experienced. e care that
An unexpected celebration of life
B C C
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W
e are approaching a caregiving crisis in Ameri-
ca. anks to the wonders of medicine and our
knowledge about the causes of many health problems,
we survive serious accidents and illnesses, live longer
than our ancestors, and encounter problems associated
with aging. Now in America, those 85 years and older
are the largest growing segment of our population.
With more people needing care, there are fewer peo-
ple available to give it or to assist in its delivery. Families
are not as closely knit or as large as they once were. And
yet family members continue to care for the vast major-
ity of dependent people at home.
Sometimes family caregivers consider their respon-
sibilities a rewarding mission. But for those who have
been thrust into the role, it can also be an extremely
lonely, stressful, and frustrating responsibility, with tasks
that are always demanding. I know this personally, hav-
ing helped care for my own gravely ill and aging family
members.
At the Rosalynn Carter Institute (RCI) at Georgia
Southwestern State University, whose mission is helping
improve the lives of all caregivers, we have found that
caring for a loved one is not an endeavor that should be
undertaken alone. Almost all family caregivers, espe-
cially those providing the most intense levels of care, re-
port signicant physical and emotional stress. Many en-
counter serious loss of income and job opportunities. To
oer the best to their loved ones and still stay strong and
healthy, they need to be surrounded by compassionate,
responsive assistance from the professionals who work
with them. And these professionals must be willing to
listen and respond to their needs.
Yet we have found in our research at the RCI that
there are oen diculties in the family caregiver/pro-
fessional relationship. Family caregivers sometimes feel
that all the attention is on the ill family member, when
they, the caregivers, need cooperation and respect—
especially in the areas of communication and informa-
tion-sharing. At the same time, professionals oen feel
that they don’t have sucient time to consult with fami-
lies regarding how they might assist them. Physicians
oen don’t realize that simply listening to their problems
and concerns can be a huge relief for families in helping
to alleviate some of their burdens.
Caregiving at the end of life brings the distinctive
responsibility of coping with many kinds of losses. Care-
givers begin mourning losses while still helping their
loved ones live their nal days to the fullest. At the same
time, the high economic toll that caring for terminally ill
patients can take adds to their emotional as well as their
physical stress. eir grief and loss absorb immense en-
ergy. And when the role of caregiver has ended, new
issues may arise in balancing the challenges of forging a
new identity while incorporating the loss.
Hospice plays a special role with caregivers during
the end-of-life period, providing compassionate service
at many levels-medical, emotional, and spiritual. Also,
the hospice philosophy embodies the concept of contin-
ued support for the bereaved aer the death.
We must all recognize and celebrate the crucial role
of family caregivers in our society, and empower profes-
sionals to respond with increased awareness, compas-
sion, and support.
Rosalynn Carter, former rst lady of the United States,
is founder of the Rosalynn Carter Institute for Caregiving.
Caregiving and Loss: Family Needs, Professional
Responses, was published as a companion to Hospice Foun-
dation of America’s annual Living With Grief® program.
3
Give the gift of Journeys. Send a loved one a year’s subscription for $25.
Online: store.hospicefoundation.org, or call 1-800-854-3402.
Caregiving and loss: family needs, professional responses
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part of nourishing ourselves is allowing ourselves to grieve
in anticipation of our loss. I always say, never miss an op-
portunity to cry.
Personal Time. It is essential that caregivers nd a way
to carve out time for ourselves, as dicult as that may seem.
Call it “the nourishing hour.” One free hour a day can make
a huge dierence in our sense of well-being. Perhaps we can
nd an hour while the patient sleeps or when someone else
stays with him or her. We may not want to miss a moment
in the last days of our loved one’s life, but that one hour can
enrich us and enhance our caregiving.
Use the hour to read, sleep, meditate, write in a journal,
walk, take a hot bath, or talk to a friend. is hour is not a
time for chores or giving to anyone else. And by all means
take more than an hour whenever possible.
Distract Yourself. Although it may feel awkward, dis-
tracting ourselves from the patient’s situation can give us re-
lief and diuse some of the pressure of facing the approach-
ing death. While caring for my mother in her last days, I
oen spent an hour shopping. It was the only time I could
manage to forget that my mother was dying.
People Support. Friends, family, hospice sta, therapists,
masseuses, and support groups of other caregivers are also
important sources of nourishment. I was isolated on the
opposite coast from all my friends during the six weeks of
caring for my mother. us I arranged a daily 15 minute
phone call with my best friend at home, a valuable support I
could count on every day at 5:00 p.m.
Prioritize. Caregiving can be overwhelming emotionally
and physically. Because we can never get everything done,
pick one item to do each day. For example, clean only one
room or do one job per day. Bills can be paid once or twice a
month. Let an answering machine take telephone messages.
If there are too many calls about the patient, put an informa-
tional message on the machine or send out regular emails to
avoid being swamped with calls.
Take Care of Your Own Health. Eat nourishing food.
Oen we are so busy pushing food on the patient or worry-
ing about their appetite that we forget our own. Eat healthily,
so that you are neither underfed or overfed.
Sleep is always impacted by stress. We may need to take
short naps or at least rest if we aren’t getting enough sleep.
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We may need to sleep apart from the patient. If we are afraid
to be separated, a baby monitor might help.
Any kind of movement or exercise, even just stretching
whenever we think of it, can give us energy and a sense of
well-being. In taking physical care of the patient, we need to
be careful not to li or strain or hurt ourselves. Ask others to
help in the physical care, if needed.
Love Yourself. Most of all, we need to acknowledge our-
selves every day. is is a critical support we always have
available. We might take time rst thing in the morning
and last thing at night to appreciate ourselves for the job we
are doing, for the love we are giving, and for surviving this
dicult time.
Judy Tatelbaum, MSW, is a psychotherapist, public speaker,
and author of e Courage to Grieve, and You Don’t Have to
Suer, as well as videos e Courage to Grieve and e Cour-
age to Grow. She trains people in dealing with catastrophic ill-
ness, grief, death, and dying.
Caregiving and HospiCe
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Feeling guilty
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Grandad received at the end of his life
was truly a celebration of his life for all
of us—a celebration that we really nev-
er expected and will always remember.
“We all spoke about that at Gran-
dad’s funeral. It has le us with a legacy
of good memories as we move on with
our lives.”
Charles A. Corr, PhD, is a volun-
teer with Suncoast Hospice and for-
merly chaired the International Work
Group on Death, Dying, and Bereave-
ment.
An unexpected...
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is paper contains 50% post-consumer bre.
Ronald K. Barrett, PhD
Department of Psychology
Loyola Marymount University
Charles A. Corr, PhD
Member, Board of Directors, Suncoast Hospice
Institute, an aliate of Suncoast Hospice
Rev. Paul E. Irion
Professor Emeritus of Pastoral eology
eresa A. Rando, PhD
e Institute for the Study and Treatment of Loss
Margarita M. Suarez
AVANTA e Virginia Satir Network
C
H
is published by the Hospice Foundation of
America as a resource for people who are
grieving and those who wish to help them.
© 2013 Hospice Foundation of America
A S. T Kenneth J. Doka, PhD, MDiv
Lindsey Currin Earl Grollman, PhD
/
Kristen Nanjundaram
Journeys
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store.hospicefoundation.org
or call 1-800-854-3402
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