Yes, A Time for Hope Holding Hands. Holding Hearts. In This

A Publication of Hospice El Paso
Holding Hands. Holding Hearts.
Yes, A Time
for Hope
In This
Together
Sibling Rivalry
...or Revelry?
Finding Grace
and Peace
7 Ways to
Celebrate
A Life
a
H O S P I C E
E L
P A S O
b
From left to right:
Chayo Apodaca (husband);
Becky Lujan, Delia Schwartz,
Gina Moss (daughters);
Roland Apodaca (son), and
Valerie Martinez (daughter)
Family has always been very important to us.
Our parents have taught us to be
good to each other and always be there for one another, in good times and in bad times. Our mother’s illness brought us even
closer to one another. We have laughed together in good times and cried together in bad times.
When a loved one has reached the stage in life requiring the preservation of dignity, deciding how and where this
preservation can best be provided is very difficult. The decision to provide that love, comfort and warmth in the home was
quickly and positively reassured after calling Hospice El Paso.
After our mother was admitted into their services, only then did we realize the full scope of the services being provided for
her care and our well-being, and the entire hospice expense was covered by Medicare.
Hospice El Paso was there for us throughout our mother’s illness, not only medically, but spiritually as well. Their guidance,
support and patience ensured our mother’s safety and quality of care, and gave us peace of mind that we had made the right
decision. No matter the time, day or night, if we had a question or concern, we could call and Hospice El Paso would respond
with professional and thoughtful compassion. Gratitude and words of thanks are not quite enough for all they did and
continue to do for us and other El Pasoans in their service.
– The Apodaca Family
2
www.hospiceelpaso.org
Welcome to Touching Lives
F E AT U R E A R T I C L E
8 Yes, A Time for Hope
Why researchers say life’s last chapter
can be a time of optimism.
by Paula Spencer
Each day brings a new perspective to the community we
serve. I am honored and proud to work with a bright,
creative and compassionate staff of employees, volunteers
and board members who provide such an important
service to our community. The result of a winning team
has once again, allowed us to surpass the number of total
patient days by over 10,000!
5
Through the generosity of our community supporters,
we were able to exceed 2010 by providing over 3,100 days
of non-funded care to El Paso patients in need which translates to over $425,000
As the change in healthcare quickly turns around us, our commitment to
hospice care remains strong and we continue to remain part of the solution.
With the implementation of our new pediatric program, Hospice El Paso will
have the privilege of providing valuable services and support to a very unique
14
4
and tender population.
There is also hope for improvement in the whole culture of end-of-life care as
we come to learn and understand a patient’s needs. Statistics show that people
facing life-limiting illnesses are opting for care that addresses medical, emotional
8
The Gift Hospice
Volunteers Give—Time
HELPING HANDS
5
In This Together
by Paula Spencer
and spiritual wishes. With that in mind, Hospice El Paso opened a new 16-bed
facility that provides 24-hour compassionate care for El Pasoans—hence, the name
CAREGIVER’S CORNER
of our new west side inpatient facility, The Center for Compassionate Care
6
(see page 17). Hospice El Paso is now offering our new inpatient facility staffed
Sibling Rivalry...or Revelry?
by Melanie Haiken
with highly specialized hospice personnel who will manage a patient’s pain and
symptoms round-the-clock.
SPIRITUAL SUPPORT
A few of the many rewards that we take away from work are meaningfulness
12 Finding Grace and Peace
and the heartfelt impact of making a difference in people’s lives. We are committed
An Interview with
Kathleen Dowling Singh
to the challenges that face El Paso and will continue to find new ways to ensure
that we can keep our commitment to our patients and families. It’s what our
LIVE WELL
community wants. We’re here to serve you.
14 7 Ways to Celebrate a Life
by Marlene Prost
Linda Black
17 Hospice El Paso’s Center for
Compassionate Care–West
Executive Director
Hospice El Paso
1440 Miracle Way
El Paso, TX 79925
Phone: (915) 532 5699
© 2011 SRI Media, Inc. (610) 455-0706. All rights reserved. Unauthorized duplication is prohibited by law.
18 The Five Stages of Life
Reconciliation
by David Kessler
CONTENTS
in hospice care and support at no charge to those less fortunate.
a
H O S P I C E
E L
P A S O
b
The Gift Hospice Volunteers Give—
H
ospice El Paso patients and
outreach, clerical support, crafting,
families benefit every day
fundraising, and many other duties
Time
thoughts and feelings. On occasion
I have sat with patients who could no
and projects.
longer communicate; but the visit is
from our community who volunteer
Each volunteer brings their own
just as important to let them know
to donate their time. Volunteers
special gift to the program, but the
they are not alone and to provide
provide support services to include
greatest gift they bring is the gift of
companionship.
much-needed breaks for caregivers,
listening. This type of volunteer work
As a Hospice volunteer these
companionship for patients and
requires patience, compassion and
special relationships have helped me
families, transportation, community
empathy. Eddie Esparza, a patient and
to put my own life in perspective. The
family volunteer, specializes in this
relationships may be short-lived, but
form of volunteering, which requires
they are powerfully meaningful to me.”
face-to-face visits with patients. Eddie
Hospice El Paso has also instituted
had this to say about his experience:
the unique Resident Pal Program which
from kind and caring people
“After I retired, I decided I had
is in place in nursing homes where
come to a point in my life when it was
Hospice El Paso has patients. When the
time to give back rather than receive.
nursing staff has patients who receive
I became a Hospice El Paso volunteer
very few visitors, or none at all, they
since hospice had played such an
call and are furnished a volunteer to
important part in my family life. I am
provide companionship for those
a patient and family volunteer, so I visit
patients, whether they are in the
patients and/or their families in their
Hospice El Paso program or not. V
homes, nursing homes or foster homes.
I try to develop a relationship with
the patient and their family. I am
genuinely interested in them and
I have found when a patient or a
family member feels the sincerity and
compassion of my interest, they are
interested in sharing how they feel
about what is happening to them and
relating stories about their family, their
history and their life. Sitting with the
terminally ill can be very challenging
and fulfilling…to know that you have
Eddie “Lalo” Esparza
4
www.hospiceelpaso.org
helped someone to share their
Besides patient visits,
volunteers contribute
in so many other ways,
each unique in their own
talents. If you would like
more information about
volunteering for Hospice
El Paso, please contact
us at (915) 532-5699,
extension 375.
a
H E L P I N G
H A N D S
b
In This
Together
Three ways hospices help not only patients, but their loved ones, too.
by Paula Spencer
M
yths about hospice care abound: That it’s just
for the last days of life. (People with a prognosis
of six months or less are eligible, though there
Here are 3 ways hospice
supports loved ones, too:
is no time limit, and it is not unusual for a person’s health
Hospice helps relieve overall stress.
to improve while in hospice care.) Or that it’s expensive.
Most Americans have limited experience with terminal
(Hospice care is covered by Medicare and private insurance.)
illness. Coping with difficult medical decisions, fear and
Or that signing up means “giving up.” (It doesn’t!).
worry, and great sadness—usually while trying to continue
Here’s one more misconception that you may be surprised
some semblance of everyday life—can exhaust anyone. A
to learn is untrue: That hospice is just for the dying person.
hospice team tackles the situation with diverse resources,
In fact, hospice care is designed to support the entire
both on site and a phone call away. Net result: Sadness
family at the end of life.
obviously remains, but the shared burden means stress
Hospice is a special concept of care designed to provide
levels plummet.
comfort and support to patients and their families when a
Studies link hospice care to better quality of life not only
life-limiting illness no longer responds to cure-oriented
for the terminally ill, but for their families as well. A 2010
treatments, according to the Hospice Foundation of America.
study of more than 700 cancer patients, for example, found
“And their families” is no casual choice of words.
that those whose loved ones died in intensive care units
(continued on page 16)
Touching Lives
5
a
C A R E G I V E R ’ S
C O R N E R
b
Sibling Rivalry…or Revelry?
How to set aside old habits and come together for a parent’s care.
by Melanie Haiken
C
oping with a parent’s illness
is hard enough. But in too
many families, resentment,
If You’re the Sibling
Who Lives Nearby…
possibly by conference call? Or are
they comfortable with you making the
decisions and relaying information?
Some distant siblings may want
guilt, past problems, and hurt feelings
among siblings amp up the stress
Understand that you all accept
to be informed every time there’s a
level. “Every issue from the original
things at different paces
new test result or medication change,
family can come back into play,” says
Someone who lives close to parents
while others may find that level of
Francine Russo, author of They’re My
and sees them frequently may be
involvement overwhelming. Respect
Parents Too: How Siblings Can Survive
more aware of their declining health.
their wishes—but first you have to
Their Parents’ Aging without Driving
So when bad news arrives, it may
know them.
Each Other Crazy. “And as the parent’s
come as a much bigger shock to
condition worsens, the feelings get
more distant brothers and sisters.
Consider bringing in a neutral
more intense.”
The opposite can also occur; a sibling
party to aid decision-making
How to escape old rivalries in a
who visits after an absence may pick
A family meeting or conference call
crisis and come together for the
up on a new symptom that you’ve
with a social worker, geriatric care
common good?
grown used to without “seeing” it.
manager, or hospice coordinator helps
everyone feel included. This objective
third party can lay out the realities and
suggest ways to work together.
“A professional who’s experienced
in family relations can keep any
sibling issues that are coming up
from overwhelming the discussion,”
Russo suggests.
Share the care (even when
it’s hard)
6
Touching Lives
Talk about who wants to know
For some hands-on caregivers, it can
what, and when
be hard to step back and let others in.
When a parent’s health reaches a
If you’re feeling resistant, ask yourself
crisis or decision point, when do your
why. Because you’re worried others
siblings want to be called? Do they
are less capable? Because you’re
want to be included in consultations
seeking validation from a parent
with doctors and social workers,
who’s always withheld approval?
a
C A R E G I V E R ’ S
C O R N E R
b
“It takes a lot of soul searching to
examine your motivations, which may
not even be conscious,” Russo says.
But if you can let go of past needs,
you can better accept help in the
present moment.
If You’re the Sibling
Who Lives Far Away…
Trust the messenger
Beware of “distrusting the messenger,”
the phenomenon where a healthcare
professional delivers difficult news
was, you’re making an enormous
to the local sibling, who in turn
contribution to her emotional health,”
communicates what she’s been told—
Russo says.
and is promptly dismissed. “Fear,
harder than asking ‘Are you okay?’ or
But take care to avoid the pitfall
combined with old family patterns,
‘What can I do?’” Russo says.
known as “anger-guilt gridlock.”
can lead us to have responses like
It’s natural to hear your sister’s
‘Oh, she exaggerates,’ or ‘She’s a
A few ideas:
complaints as accusations and go
drama queen’,” Russo says.
ƒƒ Send small gifts, particularly those
straight to guilt. But that’s not her
Unfortunately, responding with
geared towards stress relief and
goal. She just needs validation of
doubt or loads of skeptical questions
self-care: A gift certificate for a
her feelings. By setting aside your
massage, fresh fruit, a relaxing CD.
reaction, you can give that to her.
puts the messenger on the defensive.
So if you find yourself reacting this
way, take a deep breath and remind
yourself that your sibling is doing the
best he or she can with a thankless
job. If you feel you need to hear
the news directly from the doctor,
ƒƒ Treat your sibling to a nice dinner
when you’re in town.
ƒƒ Time your visits so that you can
give your sibling a break away.
ƒƒ Help pay for respite care or your
parents other financial needs.
ask to do so. Otherwise treat the
communicator with trust.
Focus on the ultimate goal:
Your parent’s care
Stop tension in its tracks by reminding
yourself that right now, the focus
should be on your parent, not your
own drama. Concentrate on your
Let your sibling vent
shared concern for your parent. That’s
An empathetic ear may be what
good for everyone’s well being. V
Don’t take “I’m Fine” for an answer
your sibling needs most. “Just by
“Most people have trouble saying they
being available to listen when your
need help, so you may need to probe
sibling tells you how awful her day
Experienced family caregiver Melanie Haiken
writes about health and travel from Marin, CA.
take a deep breath and remind yourself that your
sibling is doing the best he or she can
Touching Lives
7
Yes,
a
F E A T U R E
b
A Time for Hope
Why researchers say life’s last
chapter can be a time of optimism.
by Paula Spencer
8
Touching Lives
I
n his mid-80s, Ned was diagnosed
for a Dying Loved One. Yet too
with a fast-growing brain tumor.
often, doctors and families fear that
Eventually, he and his oncologist
once the patient goes off a curative
decided no more treatments existed
path, he or she will fall into a state
that could either cure his cancer or
of despair.
prolong his life. So he quit curative
care and entered a hospice program.
this,” Feldman says. “What happens
Not a very auspicious beginning to
is that people re-define hope. Hope
a story about hope, is it?
is invested in different goals other
Yet Ned, it turns out, was exceed-
than a cure.”
ingly forward-thinking, even though
“If all we hope for is to live longer,
he knew he was nearing his end
always, then at some point we will all
due to a fatal disease. He bought a
become hopeless,” says Ira Byock, MD,
camcorder to record stories for his
director of palliative medicine at
grandchildren, to whom he wanted
Dartmouth-Hitchcock Medical Center
to pass on his knowledge. He also
and the author of Dying Well. “But I
decided he wanted to leave a legacy
am sure it’s possible for hope to shift,
of his trademark humor. So he
because I’ve seen it over and over in
began writing down all his jokes.
30 years as a doctor.”
By the 150th, his hands were too
These new hopes can take limitless
shaky to continue, so he dictated
forms because individuals’ aspirations
another 200. Then, noticing that
and goals are as unique as they are.
musicians sometimes entertained at
Here are some common themes:
the hospice, he asked to perform a
ƒƒ To reconcile with someone or
stand-up routine. Except Ned could
“There’s no evidence to support
make amends
no longer stand, so the audience
ƒƒ To have good pain control
came to him—doctors, nurses, aides,
ƒƒ To experience something one
volunteers, and fellow patients
always wanted to do
gathered around his bed. Ned was a
ƒƒ To leave a legacy of some form
riot; the room filled with laughter.
ƒƒ To help others
“Now I know my jokes will live
ƒƒ To take up a hobby
on,” he smiled with satisfaction and
ƒƒ To have dignity
optimism as he gripped the hand of
ƒƒ To do a favorite thing one last time
a hospice counselor.
ƒƒ To be out in nature
ƒƒ To enjoy intimacy with loved ones
Hope helps all through life
“Dying is not an inherently hopeless
state,” says David Feldman, Ph.D.,
assistant professor of counseling
psychology at California’s Santa Clara
University and the author of The End
of Life Handbook: A Compassionate
Guide to Connecting with and Caring
ƒƒ To build a good relationship
with God
ƒƒ To pass on one’s knowledge or
expertise
ƒƒ To distribute possessions
meaningfully
ƒƒ To carry out some hope from
the past.
Touching Lives
9
What, exactly, is hope?
Interestingly, people in hospice seem to have more
Psychologists’ definitions vary, but a standard one is this:
goals, and in more areas of life, than those who continue
Hope exists when three conditions are met:
on a curative path, preliminary results from Feldman’s
1.Goals – having something to hope for. Call ‘em dreams,
own research have shown. This may even be a contributing
aspirations, desires. They can be big or small, and
factor to why studies show hospice patients live longer
concern any arena of life.
and report better quality of life than those who receive
2.Pathways – having a plan or strategy that will get you
standard care.
to your goals. Not having any idea how to reach a goal
would contribute to hopelessness, not hope.
3.Agency – having the energy or motivation to go after
What hope isn’t.
“Hopeful thinking is not the same as wishful thinking or
your goal. Without an urge to make it happen, you can’t
the so-called ‘power of positive thinking,’” Feldman says.
feel hopeful.
Consider the long-married Harold and Harriet. While
Having goals, a pathway to make it happen, and the
Harold underwent treatment for bladder cancer, Harriet
desire to follow through make people feel hopeful at any
refused to talk to him about anything negative—not his
life stage. A large body of positive psychology research on
pain, not his nausea, not his hair falling out—for fear it
healthy people links hopefulness to less depression and
would bring him down. Meanwhile, Harold felt unsup-
anxiety, stronger cardiovascular health, an ability to tolerate
ported because his partner wouldn’t listen to him. Their
pain better, a greater sense that life has meaning and
relationship struggled at the very time they needed one
purpose, more contentment, and better coping with stress,
another. “Helen’s way of thinking wasn’t positive thinking,
adversity, and trauma.
it was denial,” Feldman explains.
Hope likely holds similar benefits for the terminally ill,
Denial denies and distorts reality. It says: “I will ignore
Feldman, Byock, and others believe, although there’s less
reality to maintain a positive outlook.” Hope builds on
data so far because this is a fairly new way of looking at
reality. It says, “I will face reality, admit the prognosis, and
the end-of-life mindset. Hopelessness—which is one of
then ask, “Now what?”
the hallmark symptoms of depression—has been linked
with thoughts of suicide and assisted suicide in the
How families can help.
terminal and elderly.
“The challenge at the end of life is not so much protecting
or restoring hope as diversifying and redirecting hope,”
Mark J. Sullivan, MD, PhD, summarized in an influential
2003 American Journal of Geriatric Psychiatry article about
hope and hopelessness at the end of life.
And that’s where loved ones come in. What can you try?
First, make sure pain management is appropriate.
When someone is in pain, they can’t focus on their
desires and they certainly don’t have energy to make them
happen. In fact, Feldman calls pain one of the biggest
roadblocks to hope. (The other is having your family be
in denial about death.)
A cornerstone of hospice care is addressing pain so
that the person is always comfortable and can have a
better quality of life.
10
Touching Lives
Ask leading questions.
Talk openly with your loved one.
Ask, what are your hopes right
now? What’s important to
your life? What gives you
a sense of meaning?
Nothing Critical
Left Unsaid
The refusal of family members to accept end
What would you like
of life is one of the biggest obstacles to hope
to do in the time you
for the dying, studies show. “A conspiracy
have left? What
of silence,” Ira Byock, MD, calls it. The
would be left undone
remedy: Talk about what’s happening.
if you were to die
sooner rather than
later? (See sidebar on
this page, “Nothing
Critical Left Unsaid.”)
“I’m not sure we have to be happy
about it, but we do have to acknowledge
we’re mortal,” says Dr. Byock, professor
at Dartmouth Medical School and author
of The Four Things That Matter Most. When
families avoid talking about impending death,
Be a cheerleader.
he says, the inability to be truthful puts up an
Sometimes the dying have doubts
emotional wall that separates them from one
about what’s possible or appropriate. Encourage that sense
another. “Everyone puts ever more effort into
of motivation: “Sure you can do it; we’ll help!” “You don’t
ignoring the obvious.” He suggests a better way:
want to pressure the person into anything, just give gentle
encouragement,” advises Feldman.
Stay attuned to ice breakers from the dying
person that can be openings for frank, loving
Look for ways to make dreams and plans come true.
conversations. Some examples: “I wish it would
When someone expresses a desire, take it seriously.
be over.” “I think the doctor is just trying to make
Try to find ways to build a pathway for it to happen.
money off me.” “I hope I can live to see Julie’s
One 90-year-old yearned to drive a Ferrari before he died;
baby born.”
his family and hospice coordinator worked with a local
dealership to make it happen. (His oxygen tank sat in
Resist the common impulse to deflect such
the passenger seat next to him!)
comments with a quick, “Oh don’t talk like
But know that many wishes are more basic and easy,
that!” Instead, try a response that sounds more
if no less heartfelt. Perhaps your loved one wants to
like an invitation for sharing: “That sounds hard.”
reconcile with an estranged sibling or child. Or meet with
“I’m so concerned and I’d love to hear how
a clergyperson one-on-one. Or take up birdwatching.
you’re really feeling.” “I hate to see you going
Or tell jokes.
through this.” “I can’t imagine how you’re going
Dave Feldman was the hospice counselor whose hand
through this.”
Ned, in the opening anecdote, clutched after his bedside
comedy routine. “It was an amazing moment of immense
Also use “I” statements to open up to other
hope,” he says. “You could see it on his face.”
family members. Because you’re talking about
And that, as they say, beats the alternative. V
your own feelings—“I’m worried Bill’s getting
weaker”—this way of speaking is less threatening
Paula Spencer is the editor of Touching Lives and a senior editor of
Caring.com. She specializes in writing about life stages.
than saying, “Bill’s sicker, we need to talk about
his dying!”
Touching Lives
11
a
S P I R I T U A L
S U P P O R T
b
F I N D I N G
The Touching Lives Interview:
What do those who haven’t
attachment to this sense of body as
Insights from spiritual adviser and
witnessed much of it
“me,” attachment to loved ones,
author Kathleen Dowling Singh
misunderstand about the
attachment to this beautiful planet,
experience of dying?
attachment to what we know. Most
Dying is often a radiant and grace-filled
of us will observe our own aversion
moment. It is a privilege to be present
to the unknown, aversion to physical
with it. Entering this mystery, and
pain, aversion to perceived loss.
being able to stay present with it, calls
It’s an epic inner struggle to come
forth our own courage and calls forth
to peace with a deep realization that
deep compassion and common
we are mortal beings, that we have
humanity. We see the quieting, in
a shelf life. Most people avoid the
another, of the striving and the
questions and the struggle, which
grasping and the tension that
only makes our dying more filled with
characterize the majority of the
emotional anguish.
moments of most of our lives. We
see, finally, the ease and surrender
Describe what you call the “nearing
that herald entrance into our essential
death experience.”
nature, buried for most of us beneath
The nearing death experience can
layers of constructed identity.
occur weeks, days or only moments
before we enter the phase of active
12
Touching Lives
Why are many people afraid
dying. It has powerful parallels
of dying?
with deep experience of spiritual
The most beneficial way to understand
realizations. It’s characterized by
this question is to ask it to ourselves:
qualities of relaxation, of withdrawal
Why am I afraid of dying? See what
from worldly activities, of brightness
arises. For most of us, even the asking
or radiance, of a sense of attention
of the question stirs up deep feelings of
drawn inward in a concentrated
attachment, of aversion, of uncertainty.
way, of silence, of the sacred, of
If we ask the question and ponder
transcendence of who we have
the response with a willingness to be
believed ourselves to be and of all the
attentive to what arises, most of us will
places in our lives where we’ve been
notice attachment to this sense of self,
“stuck,” of knowing rather than simply
G
a
Grace
S P I R I T U A L
S U P P O R T
A N D
b
Peace
believing, of intensity, of merging, and
worries, and sadness, and, to the
How honest is my self-inquiry? What
of perfection.
degree we are able, let go. May we
do I know of my own depths? How
These are qualities not ordinarily
approach each other at our deathbeds
thorough is my forgiveness? How deep
experienced by our separate sense of
with less fear and preoccupation and
is my gratitude? How mindfully am I
self. They are the qualities of grace.
with more clarity and compassion.
living each moment?
The very presence of these qualities
Affirm these things: “I love you.” “I’m
Investigate the “who” it is we
suggests that their source is in our
grateful you love me.” “I forgive you.”
think will die. Practice living a life only
essential nature, far beyond the
“Please forgive me.” “You can go.”
lightly dusted with form. Practice
conceptual image of the self.
Give the gift of our attention.
letting go. Letting go not only makes
Whether death occurs slowly from
May we assure our loved ones of our
dying easier; it brings much more joy
a disease or quickly from an accident,
presence, without clinging or control…
and ease to living. V
these qualities seem to emerge. They’re
just with love.
identical to the qualities necessary for
May we exercise true compassion
deep spiritual insight and cultivated by
and allow the dying person to turn
spiritual practitioners from every tradition.
inward. Let us help them unbind all that
Dying is the most profound spiritual
binds them to attachment to this body,
experience of a lifetime.
this lifetime, this self.
Spiritual adviser and former hospice worker
Kathleen Dowling Singh, Ph.D., is the author
of The Grace In Dying: A Message of Hope,
Comfort, and Spiritual Transformation.
Be present.
You talk about transforming death,
in our perceptions, from a time of
What else helps one more peace-
tragedy to a time of grace. What
fully surrender the body and the
can families do to help foster such
ego at the end of life?
a shift?
Prepare for death while in the midst
Discriminate between the time of
of life, far before the moment of a
sickness and the time of dying. In the
terminal diagnosis. Just as we often
former, it’s appropriate to help a loved
inventory our worldly possessions,
one fight to stay alive, be present and
accounts, and advance directive
supportive. In the latter, it’s appropriate
wishes, how beneficial it would be if
to help a loved one let go and face
we conducted a spiritual inventory.
death, be present and supportive.
Sit and ask: How well have I learned
Also, do our own work. Honestly
to love? How truthfully have I learned
look at our own fear, attachment,
to live? How generous is my heart?
Touching Lives
13
time when they are losing control over
many things, said Carol Weaver,
director of enrichment at a hospice for
the past 10 years. “They’re leaving a
living legacy for their children and
grandchildren,” she explains. “And it’s
something for family members to keep
and cherish.”
2
Record a life review
We all want to know that our
life mattered. That’s why the formal
“life review” has become a popular
process. Prompted by prepared
questions, a dying loved one is
encouraged to talk about life experi-
7
Ways
to
Celebrate
a Life
by Marlene Prost
14
Touching Lives
ences, from early childhood on, while
the family records the conversation.
P
“Just give suggestions, like when
eering into the past and
were you born? What was the favorite
examining the events that
toy you played with? What are you
gave life meaning can be a
afraid of?” Weaver says. “Not just
surprisingly uplifting experience. Many
facts and figures. Evoking emotions
families find that celebrating the life
presents a more comprehensive view
of a terminally ill loved one brings
of their life.”
everyone closer. It can inspire candid
talk and laughter. What’s more, the
process gives the ill person, who may
be feeling vulnerable, a sense of
3
Share a personal message
Sometimes it’s awkward to tell
even your most beloved relative or
control over his or her own legacy.
friend how you really feel. Another
These seven loving ideas can help
way: Make an audio or video recording
you all cherish old memories while
of yourself sharing reminiscences and
creating new ones.
feelings. Weaver recalls a young
1
woman whose taciturn grandfather
Create a memorial DVD
wouldn’t let her talk about her feelings
Thanks to video and digital
for him. Putting them on tape, she told
technology, families can select photo-
Weaver, allowed her the opportunity
graphs, slides, and action shots of their
to have closure.
loved one and put them to favorite
“Patients are reassured that their
music on a DVD that the “star” can
life had meaning, and that they are
enjoy now.
loved and respected,” she adds—
Helping to plan the DVD gives a
even those who are reluctant to
dying person a sense of control at a
hear it face-to-face.
a
L I V E
W E L L
b
Some of our happiest family memories are
of everyday life: Going fishing, watching a
child’s music recital, playing ball.
4
Weave tangible memories
his five-year-old son, explaining every
he leaned over and said, “I haven’t felt
Tributes can take non-media
step of his illness. Weaver says her
this young in a long time.” He even
forms, too. For example, family and
hospice’s bereavement department still
took over the controls for 20 minutes.
friends who live too far to visit can
uses the book.
You can bet those are 20 minutes
contribute to a quilt made up of fabric
Music was a big part of life for
both he and his daughter will cherish
squares that capture memories and
another 39-year-old father who was
forever. V
sentiments. Send everyone a square
debilitated by strokes. With the help
to embellish or decorate with ink,
of his music therapist, he surprised his
embroidery, or other mementoes.
eight-year-old daughter with a song
A T-shirt collector saw his favorites
about a father putting his daughter to
assembled into a blanket, which was
bed. The song ended with words she’d
passed on later to his son.
always say: “I love you all the way to
Another popular trend: Huggable
God and back.”
memorial teddy bears made out of a
“This is a CD just for her, she’ll have
loved one’s clothing.
the rest of her life,” Weaver says.
5
7
Record day-to-day living
Some of our happiest family
memories are of everyday life: Going
Make a wish list come true
Many of us carry around a
“bucket list” of things we’ve always
fishing, watching a child’s music recital,
wanted to do, or would love to
playing ball. One grandmother asked
do one more time. Often you can
for a videotape of herself baking
find ways to turn even unlikely
cookies with her granddaughter. Try
wishes into realities, with a few
turning on a camera set up on a tripod
modifications.
during dinner on a good day. Play back
One 92-year-old hospice patient,
these relationship-building moments
a former flight instructor who
later, on not-so-good days.
once owned an airport, wanted
6
Marlene Prost is a freelance writer who
specializes in writing about health care issues.
to fly again—something he
Leave a work of art
hadn’t done in more than
Few of us ever get to write that
40 years. His loved ones
novel or record that hit song. But the
arranged for him to go up
creative process can take on urgency
in a four-seat plane with a
when time grows short. One 35-year-
flying instructor, his daughter,
old hospice patient wrote a book for
and a nurse. In mid-flight,
Touching Lives
15
H E L P I N G
a
H A N D S
b
(continued from page 5)
suffered more physical and emotional
distress than those whose kin died
to take a shower, she’d cringe,” Alicia
“When I would try to lift my mom
with hospice services.
says. “The nurse would show us how:
When Jennifer Wall Alamdari was
‘Put your arm like this, let her move
Hospice helps with grief support,
16, her 56-year-old mother was dying
with you, move the sheets this way.’ I
both now and later.
of cancer at home in Crutchfield,
loved that they took the time to show
Grieving doesn’t begin at a loved one’s
Kentucky. “My father and I were
us all those little things. And I could
death. “Grief started the day Steve
call any time with questions—they
truly were angels.”
completely unequipped to take care of
was diagnosed,” says Tyra Damm of
her,” she remembers. “It was such a
Frisco, Texas. Her 39-year-old husband
relief to know that someone skilled
was coming to take the weight off of
us and that mom was being properly
cared for.” Because her dad had
another adult to talk to and consult
Hospice care is
designed to support
the entire family at
the end of life.
of 15 years eventually died of a brain
tumor they soon referred to as the
“Damm spot.”
The emotional pain of losing a
loved one, felt before death, is called
with, Jennifer felt she gained some
anticipatory grief. A 2001 study in
space “to be a kid again.”
The Gerontologist called anticipatory
She also learned ways to cope
grief equivalent in intensity and
with impending loss. “Our hospice
breadth to the response to death.
nurse showed me ways to be close
It’s real grief—and not surprisingly,
to my mom and give her comfort:
it’s very common among those who
massaging her hands and feet with
care for the terminally ill.
lotion, reading to her, buying her a
Beginning while Steve was in
new nightgown, making food that
hospice care and for 11 months after
was easy for her to swallow (her throat
he died, hospice grief counselors met
was raw from the radiation),” she says.
with Tyra and her two children,
“Hospice helped us find ways to be
Cooper, then 8, and Katie, 4. The
there for her and ourselves.”
children’s therapy included music and
artwork—“things they could control,
Hospice helps with hands-on
when they couldn’t control everything
guidance.
else going on,” Tyra says. “They
When Alicia Garate-Golembiewski’s
helped me work through things like
mother was dying at her San Francisco
Steve’s first birthday without him and
home of mesothelioma, a rare form of
what was normal for grieving kids
cancer caused by asbestos exposure,
when I wondered about how to
she liked her hospice caregivers so well
discipline,” she says.
she called them her “angels.” For Alicia,
“I was surprised to get grief help for
these angels were teachers as well.
both me and the kids even before Steve
That’s because in addition to providing
died,” Tyra adds. “We all needed it.” V
hands-on care like bathing, changing
sheets, and medication dispensing,
hospice workers also show curious
families how to manage common
situations when they can’t be present.
16
Touching Lives
Paula Spencer is a writer based in
San Francisco and Chapel Hill, North Carolina.
When each of her parents used hospice
services, she gratefully experienced the
hospice care described in this article.
a
H O S P I C E
E L
P A S O
b
Hospice El Paso’s Center for
Compassionate Care–West
T
his summer Hospice El Paso opened El Paso’s
CCC-W offers all the amenities of a cozy, home-like
first stand-alone inpatient facility—the Center for
atmosphere in a warm and welcoming setting. Pets are
Compassionate Care West. (CCC-W)
invited to drop by for a visit. Each room is uniquely decorated
This 16-bed facility provides around-the-clock services
and can accommodate patients of all ages. In addition, the
and comfort for patients in need of care beyond what can
distinctively decorated pediatric room has all the facilities
be provided in a home setting. The unit is staffed by
needed to provide for a quiet, stress-free environment for
Hospice El Paso’s professional interdisciplinary team that
children and parents in need of the highest quality care.
specializes in assuring that every patient and family member
The family and break room is a comfortable and relaxing
receives individualized 24-hour care. The unit and team are
place for discussion or a quiet rest.
designed to provide the essential and appropriate care so
The Hospice El Paso Center for Compassionate Care West
that the patient can return home as soon as possible.
is located at 1575 Belvidere on the grounds of The Monte
The CCC-W professionals—nurses, physician, pharmacy,
Vista at Coronado. Hospice El Paso welcomes tours of the
social worker, chaplain, volunteers—manage pain and
new unit and is happy to answer any questions you may
other symptoms of the life-limiting illness while enhancing
have. Please call us at 915-532-5699. V
the quality of the time remaining for the patient and
family members.
www.hospiceelpaso.org
17
a
H O S P I C E
E L
P A S O
b
The Five Stages of Life Reconciliation
by David Kessler
O
Expression
ur belief systems shape our
lives. We believe that if we
are educated, we will get a
good job. If we accumulate money,
we will be safe from hunger. If we eat
right and exercise often, we will be
healthy. We believe that pills will work,
1
Many people have trouble accepting the demise of their physical selves
because they’re blocked by anger. We all judge, hate, blame others, become
furious and behave in petty ways. Sometimes we’re justified in doing so;
usually we are not. To heal and ready ourselves for peace, we must express
our feelings without fear that we will be punished. You don’t have to tell
that medical technology will keep
someone you hate them. You can say it to a trusted friend or scream it into
disease at bay, and that doctors will
your pillow. Once you do, the angry thoughts begin to dissipate. You can also
save us and our friends and family.
tell God why you’re upset. I’ve worked with people from various faiths who
Inevitably, our beliefs fade as we
feel they need permission to become angry with God. God understands
realize that we will not live forever,
that you need to express and release your feelings in order to love.
no matter how smart, rich, or healthy
Responsibility
we may be, and no matter how good
our doctors are. As we must let go
of everything we have known, faith
allows us to escape the fear that all is
random and meaningless.
My co-author of two books,
Elisabeth Kübler-Ross, has described
the five stages we go through as we
2
depression, and acceptance. She
always said they are not linear, not
everyone goes through every stage,
There is a similar approach to aspects
of life reviews that our loved ones
may go through. They are aspects of
a large life review that will sometimes
the quality of their lives. Specifically, it helped them take responsibility for
their actions, thoughts, and lives. They know that they’re not to blame
for their diseases and that dying does not mean that they have somehow
failed. They also understand that they have played a role in all that has
happened to them in life.
face death: denial, anger, bargaining,
and they are as unique as we are.
People have often said that facing a life-challenging illness has improved
3
Forgiveness
To forgive does not mean to accept bad behavior. When we forgive, we
release ourselves from the binds of hates and hurts. We forgive ourselves
and others because we want to die whole. We’re afraid that forgiving the
people who have hurt us is the same as absolving them of their misdeeds.
But we forgive for our own sake, when we realize that holding on to
challenge our loved ones the most.
grudges forces us to live in unhappiness. Forgiving ourselves is just as much
It is helpful to understand these five in
a part of spiritual growth as forgiving others. Our loved ones are often hard
particular: expression, responsibility,
on themselves at the end, remembering all the things they’ve done wrong
forgiveness, acceptance, and gratitude.
and wondering if they can ever be forgiven. I tell them that if they feel
that they cannot forgive themselves, they should simply ask God or a
Higher Power for help. We can die in unforgiveness; some people do die
that way. But many choose to make way for inner peace by forgiving.
18
www.hospiceelpaso.org
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4
Acceptance
I remember very well the stout, 42-year-old banker who grasped his dying
father’s shoulders as the older man lay in his hospital bed and practically
shouted at him: “Dad! Fight it! Fight it! You’ve been a fighter all your life.
You can beat this!” We live in a fix-it society, with the technology to repair
many broken things at our fingertips. We forget that we’ve all been
deliberately designed to “end” one day. When that ending happens,
MARTIN FUNERAL HOME WEST
there’s nothing to fix. Optimism and a fighting spirit are good things, but
at a certain point, optimism becomes denial. It’s important that our loved
MARTIN FUNERAL HOME WEST
ones be willing to fight when fighting is appropriate, but they will all face
that moment in life when it is time to stop fighting, to stop treating death
as the enemy. This is not giving up. It’s accepting what is happening, riding
the horse in the direction it’s going. Once the final death process has
started, it cannot be stopped, any more than a woman in labor can be
prevented from delivering her child.
We don’t have to like what we accept. Accepting that life is complete is
perhaps the most difficult of the steps toward spirituality. There may be
things we wish had happened—more time, more opportunities, and more
experiences. But their absence doesn’t mean that a life was incomplete.
5
Gratitude
Having expressed one’s feelings, taken responsibility for all that has occurred,
forgiven oneself and others, and accepted what is now occurring, the
person on a spiritual journey becomes profoundly grateful for his or her
life, for both the good times and the bad.
Grateful for the bad times? Yes. Fifty-four-year-old Mark, who lost his
eyesight in an accident at age 15 and was now dying of lymphoma, told me
he remembered the colors. His favorite was blue. “Some are born blind.
They have never seen blue. I am so thankful; I can still see it in my mind.”
Expression, responsibility, forgiveness, acceptance, and gratitude all lead to
reconciliation. As friends and family, we are the best and safest support our
loved ones have for these possible reviews. These are the challenges I’ve seen
countless people take on the road to spirituality. And the peace they attain is
medicine for their souls. V
HARDING-ORR & MCDANIEL
MARTIN FUNERAL HOME CENTRAL
MARTIN FUNERAL HOME EAST
HARDING-ORR
& MCDANIEL
KASTER-MAXON
FUTRELL
MARTIN
FUNERAL
HOME CENTRAL
RESTLAWN
MEMORIAL
PARK
MARTIN FUNERAL HOME EAST
KASTER-MAXON FUTRELL
RESTLAWN MEMORIAL PARK
Proudly
supports
Hospice
El Paso
David Kessler is author of The Needs of the Dying and co-author
of On Grief and Grieving, with Elisabeth Kübler-Ross.
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Did you know that you have the right to choose your hospice care provider?
W
“ e’re glad we chose
Hospice El Paso.”
Hospice El Paso patients and their families are glad they made their decision to call
Hospice El Paso. After they saw and experienced all of the services and benefits that
were available, almost all said they would have called sooner. We’re here to help!
Call us today at 915-532-5699
or visit us online at www.hospiceelpaso.org.