RETURN TO TOP
for Death Without Denial
Robertss overriding message is that there
isnt one right way to express sorrow and that people should
be allowed to use whatever rituals or comforts they need for as
long as they need, without censure. Most importantly, she shares
her own, very personal, secrets of how she mourned.
This book is for anyone who is facing the prospect
of lifes final chapter--either for themselves, or a loved
one. The reader will walk away feeling someone does understand what
they may be going through, and that there are answers on how to
walk through the experience of death with dignity.
As a physician who treated over one thousand HIV
patients, and more recently as a patient with metastatic colon cancer,
I have found the topics of grief and death can often marginalize
us at a time when we desperately need compassion, understanding,
and practical advice. Governor Roberts tackles this least understood
and most shunned universal experience--death--with incredible grace
R. Scott Hitt, M.D.
President of the American Academy of HIV Medicine
Past Chair of the Presidential Advisory Council on HIV/AIDS
By sharing her deeply personal story, Barbara Roberts
offers invaluable insight and wisdom to anyone facing illness and
loss. Her experiences are a perfect illustration of the help--and
hope--that hospice can provide to the terminal ill.
President, Hospice Foundation of America
This book teaches us how to be advocates for ourselves
and for our loved ones when we face a life-threatening illness.
Barbara Roberts provides accurate and timely information that will
help us make good, end-of-life decisions for ourselves or for someone
we love.Å This is a touching story about love and loss, and grief
and growth. Robertss book tells the story that hospice people
know needs to be told.
Ann Jackson, Executive Director, Oregon Hospice
What a wonderful, tender and gripping book. Former
Governor Barbara Roberts sheds the trappings of government to speak
from the heart about the dying and death of her husband, Frank,
what this said about him, about her, and about all who surrounded
them. The book is about the shattering feelings that rip through
us and the tender moments, a glimpse here, a word there, a nudge
somewhere, that bring us together for that rare sighting of hope.
The Rev. Richard B. Gilbert, Executive Director,
The World Pastoral Care Center
For those of us who knew more of Roberts
public side, this book provides a flood of new, quite personal insights.
But no contradictions: To know Roberts is to know compelling honesty,
freshness, humor, hope.The people of Oregon were fortunate to have
her as governor (if for but one termthe hard years in which
she lost her husband.) Now, with her book and its themes so unusual
for a political figure, we all get to share.
Neal Peirce, Syndicated Columnist, Washington
This is a book about livingliving with certain,
inevitable, close death. Its about grief and the blessings
of in-home hospice care. But, more important, it is a book about
pre-planning for death... It is beautifully written, moving, and
all who read it get an up-close view of, as Roberts explains, how
the hospice program feels like a large, beautiful quilt.
Jane J. Eves, HIU Magazine
Frank and Barbara Roberts
RETURN TO TOP
All book excerpts from Death Without Denial, Grief Without Apology
by Barbara Roberts are copyrighted by NewSage Press and the author.
Reproduction of this material without the publishers permission
The following is an excerpt from the book,Death
Without Denial, Grief Without Apology, copyright ©2002,
Barbara K. Roberts.
A Culture in Denial
I stood in the doorway of the large bedroom staring
toward the windows. But I did not see the winter trees beyond the
glass, the now-empty bird feeders in the late sun, or even the dark
oak that framed the windows and the window seat in the warm and
I saw only a single white rose and a sprig of
pine in a small vase on the window ledge next to a lovely piece
of sculpture. Three shiny bronze dolphins played and leapt in the
metallic waves of the art piece. For a long time I stood looking
at the sculpture, imagining the dolphins sounds and sensing
their freedom. Then silently, once again, the tears began.
This was no ordinary room. It was the bedroom
where my husband had died six weeks earlier. The sculpture was the
urn I had chosen so carefully--a tribute to him and to the sea he
loved. I had placed the urn containing Franks ashes on the
window ledge, near the outside bird feeders. When Frank could no
longer go outdoors, he had watched the birds from his bed. The bed
where he died was next to his big chair, near the large dresser
with the framed family photographs he had requested.
His urn was on the window ledge, but I couldnt
Frank died on Halloween and he would be interred
on his birthday, December 28th. I brought him home for Thanksgiving
and Christmas. Construction workers were finishing a new room at
the mausoleum where his remains would be placed in two more weeks.
But especially during this season, I couldnt face the thought
of Franks urn in the dark and lonely mausoleum vault. Frank
was home for the holidays. But I couldnt tell anyone.
So I stood crying in the lovely big bedroom, alone
with his ashes, the devastating memories of his death--and my secret
life of grieving.
And then I did what I did every afternoon. I walked
over to his urn, put both hands on this lovely art piece and said,
Hi, Honey. Im home. In this room, this sanctuary,
I could still talk to Frank, report about my day, kiss his photograph,
and wrap myself in his robe. Here, holding his urn in my lap, I
could tell him how I struggled through each day without him.
So I ask myself if more than seven years after
Franks death in 1993, is this the story one dare tell to strangers
-- or even friends? Are these the actions of an emotionally stable
person? Will people who know me, reading this book, shake their
heads? The answer is, I cant worry about these questions if
I am going to write about the grieving process with any honesty
I cannot hide from public view these uncomfortable
stories and be of any real help to people who read this. For it
is in the telling of such stories that I began to free myself from
the cultural bondage of appropriate grieving and allowed
myself the normal and natural experiences I needed to heal. I do
not know who made these rules about appropriateness.
I only know they are wrong. When we share our grief stories, we
help free, not only ourselves, but we free our society from the
silence and isolation that has long surrounded death and grieving
in this country.
When my father died unexpectedly in 1990, a friend
gave me a wonderful book about loss. To Heal Again
by Rusty Berkus is primarily a picture book with bright, Japanese-like
illustrations and minimal text. From my first reading of this book,
two thoughts stayed with me, and sustained me:
It will take as long as it takes.
There is no right way to grieve--there is
just your way.
When I read these words it was as if this book
gave me permission to grieve in my own time and in my own way. Those
words imprinted on me and they have become my belief.
Unfortunately, we live in a society that seldom
gives us such permission. We are surrounded by a culture afraid
to use the words dead, death, died, or dying. Instead we say loved
ones pass on or pass over. They are deceased,
gone, in heaven, or on the other side.
People are no longer with us, sleeping forever,
and have passed away. She lost her son in
a car accident. Their daughter was taken from them due
to cancer. An old bowling partner kicked the bucket.
Your Army buddy bought it in Vietnam. And the list goes
Dying and dead are words that seem so final, so
harsh, in a society unused to hearing them. A patient is terminal
rather than, dying. A doctor is inclined to say, He has six
months, rather than He will die before summer.
Yet, it is only when you can say the words or
write the words or hear the words, that you can set aside denial
and begin the healing process. Part of the healing process surrounding
death is to come to terms with your loss, to accept that your loved
one is gone. Acceptance begins by simply saying the death words.
Yet our culture postpones that reality by word and by deed.
We send dying patients to hospitals to be hooked
up to heart monitors, blood pressure systems, intravenous feeding
devices, catheter tubes, and respirators. In most cases, none of
these medical interventions matters or even makes sense. What a
dying person needs is comfort, closeness, dignity, and in some cases,
Hospitals are isolating, intrusive, and expensive
for the dying. They often hide the reality that death is approaching.
Hospitals give us the sense that we are doing the right thing. We
think of a hospital as a place one goes to get well. We often expect
miracles there. Nurses, clean white sheets, sanitation, and flower
deliveries imply recovery. Thermometers, patient charts, visitors
hours, and doctors reassure us that we are doing everything
Everything but what most dying patients would
choose. Home! The sound and smell of the familiar, ones own
bed, family, animal companions, cherished surroundings, and personal
choices are tremendous comforts when dying.
Traditionally, doctors are trained to sustain
life, not plan for death. However, if the doctor would say dying
to a patient, the pretense of recovery would be gone. If a spouse
or life partner says dying to a loved one they are then
free to plan, share, and say goodbye over days or weeks or months.
The dying person could then speak the truth to old friends, thank
parents, prepare children. Conversations could be real. Expectations
would be expressed. Fears could be shared. Memories could be made
that would sustain and comfort those left to grieve once death arrives.
Our culture must stop whispering, hiding, and
turning away from death and grief.
And if death due to aging or disease is not bad
enough in this respect, even worse is this societys reactions
to a death caused by drugs, AIDS, suicide, or family violence. In
these cases, when family members are desperate for words of comfort
and understanding there is silence. These are the if only
deaths. Loved ones have the extra burden of believing they could
have prevented the death, If only, If only.
We must no longer be afraid to challenge a culture
that expects silence on the subject of death, a culture that closets
the process and then once death happens, asks us to grieve privately
and quickly. We are expected to move on, to get
Life is too precious and grieving is too important
to permit the delegation of dying and mourning to a closeted experience.
The art of living and the art of dying are equally significant.
Grieving is an intimate part of both.
If you are questioning whether it is okay to grieve
in your own way, then I give you permission to weep, weep loudly.
Take his sweatshirt to bed. Talk about her and to her. Keep pictures
in the living room and set an empty place at the table. Watch old
movies and videotapes that show that familiar face. Hug a pillow
and rock yourself. Put your feet in his shoes or wear her ring on
a chain under your clothing next to your skin. Cry out his name
in the night, visit her grave as often as you need to. Do the things
that help you through a night, a day, a week, a year, two years.
Through all of this remember, It will take as long as it takes.
You are not crazy. You are mourning. These and
other personal grieving rituals can help you through this long and
lonely process. You need not apologize for feeling, for hurting,
for struggling, or for continuing to love and long for someone who
You do not need my permission or anyone elses
permission to grieve, but in a culture that frequently withholds
that permission, I want to make clear that you are free to mourn
Do not let anyone tell you otherwise.
for Death Without Denial, Grief Without Apology
Former Oregon Governor Barbara Roberts writes in
her book, The art of living and the art of dying are equally
significant. Grieving is an intimate part of both. Never has
this been better illustrated than in the intimate portrait she paints
in Death Without Denial, Grief Without Apology. The book,
Roberts first, is as much an instruction book as it is a first
person account of the last year of her husbands life... It
is an honest book without being maudlin or self-indulgent. It is
unflinching and filled with love.
Merlin Douglas, PSU Magazine
Her book is intensely personal in its tone
and its approach. But it is quite possibly the most accessible book
most readers will ever encounter when it comes to death and grief.
This is partially because Roberts own intelligence and warmth
come through in every word and because the purpose of the book is
Dan Hayes, Statesman Journal
Barbara Roberts was our governor from 1991 through
1994. Only now does the general public have another chance to appreciate
what her friends and colleagues must have known for a long time:
How deeply caring a human being she is, and how well she writes.
This book packs a powerful message... She doesnt mean to do
this, but she tells her story in ways that make the tears well up.
And every once in awhile she makes her readers laugh... Youll
want to get and read her book.
Hasso Hering, Editor, Albany Democrat
RETURN TO TOP
The following is an excerpt from the forthcoming
book,Death Without Denial, Grief Without Apology, copyright
©2002, Barbara K. Roberts.
My experience with the hospice program feels like
a large beautiful quilt.
Each piece is a different color, shape, and fabric. Some memories
I touch gently, feeling the sheen and softness of that particular
experience. Other memories are rough yet add beauty and unique pattern.
Some of these I can only glance at briefly before quickly looking
away to more soothing, comforting parts.
My hospice quilt began in 1992 on an escalator
in a shopping mall during the holiday season. As I viewed the scene
from the slow-moving stairs, I focused on a fir Christmas tree covered
with dozens of identical shiny metal ornaments. Two pleasant looking
women sat near the large tree at a table with brochures, and a discrete
identifying sign that read Mid-Willamette Valley Hospice.
As I arrived at the bottom of the escalator I
was suddenly facing the tree and I realized that each shiny ornament
was engraved with a name. I glanced away, moving quickly to avoid
eye contact with the two women at the table.
Go buy another Christmas gift! Get in the spirit!
I told myself. This would be a very important Christmas with Frank.
I wanted everything to be perfect. Perfect. But how would
I make someones last Christmas perfect? Frank did not seem
sick, even though his prognosis was terminal. By next Christmas
he wouldnt be here. Next Christmas Frank would be dead.
I stopped, turned around, and walked back toward
that special tree and the hospice table. A multitude of silver ornaments
shimmered with reflected light--individual remembrances for loved
ones, especially during this difficult season. I wrote a check so
that my late fathers name and ornament could be on the tree.
This hospice contact is about Dad and not about Frank, I reassured
I exchanged holiday greetings with the women at
the table, picked up one of their brochures without looking at it,
put it in my coat pocket and walked away. One more second and I
would have been sobbing openly right there in the middle of the
mall. I held my hand on the folded brochure in my pocket where the
printed words soothed me as if they had been written in Braille.
The hospice brochure remained in my coat pocket
for several days, unread. By New Years Day it was in my bedside
table, still folded, still unread. Each night as I climbed into
bed, the brochure beckoned to me, waiting to be read. It reminded
me of one of those movie cartoons where the item of temptation takes
on a bright, pulsating glow that can be seen through the refrigerator
door or through the closet door. But I simply couldnt muster
the courage to read the small booklet.
I needed to understand hospice so Frank and I
could talk about it and Frank could decide if it was right for him.
But I also understood that this hospice choice was about me. What
if Frank said Yes and then I didnt have the strength
to follow through? What if I couldnt bear to watch him in
pain, watch him deteriorate, watch him die at home? I had so many
questions and I knew some of them would be answered in the brochure.
I needed to read it soon. Soon!
When I finally opened the bedside drawer and took
out the brochure, I noticed the logo for the first time. It was
a circle with four layered sets of hills and then mountains and
the words Sharing the Journey. The first page began,
Its called Hospice. And then it explained in one
sentence all I needed to know:
Hospice is a philosophy of neither shortening
nor prolonging life but rather letting the terminal illness take
its natural course with care and comfort of symptoms to provide
the goal of a peaceful death with dignity.
I read the sentence again. And then again. And
then I devoured every word written in the folder. My chest grew
tight with emotional pain and unshed tears. I loved what the brochure
said yet I hated what it meant for Frank and me. How could anything
so painful be right for Frank? How could choosing something that
seemed so right cause such wracking sobs? How could I discuss this
pain and this confusion with strangers? I thought about it for a
long time that night and then mentally added another piece to my
Finally, I decided I would visit the hospice office--alone.
I wanted to prepare myself for the discussion Frank and I would
share later, and for the meeting that would likely follow between
Frank and the hospice providers. Thank goodness for my decision
to go alone! Three questions into my intended professional
interview with the hospice director, I fell apart. Everything I
was feeling came pouring out. Fear. Anger. Self-doubt. Frustration.
Hopelessness. And a hundred questions.
The hospice director handed me a box of tissue,
held my hand, held me. Clearly she had been here before with family
members. When it was over I was totally drained but I felt ready
to help Frank through this same set of questions, this same need
to understand, this same valley. After that visit, I began to understand
part of what the hospice logo meant about sharing the journey.
Frank and I soon learned about the services available:
medication, pain control, oxygen, patient bathing, respite care,
volunteer help, equipment, counseling. As Frank grew more ill and
his needs greater, hospice would be there to fill those growing
needs: a hospital bed, liquid morphine, special bed pads, and bathroom
equipment. Hospice emphasized that each new service or equipment
would come with an explanation and supportive reassurance. Step-by-step
we would learn.
We also found that hospice care was for all ages
and any terminal diagnosis when life expectancy was six months or
less. Cancer, AIDS, Lou Gehrigs disease, kidney failure--whatever
the situation, hospice was prepared to help. Financial coverage
could be by insurance, Medicare, Medicaid, or on a sliding scale
based on ones ability to pay.
But most importantly for me, the hospice staff
made clear their commitment to help keep Frank free of pain. Hospice
care is committed to the belief that the quality of life is as important
as the length of life. Hospice staff works hard to give the dying
person as many choices as possible, to help him or her feel in control
until the end. When you are caring for a terminally ill patient
it is easy to make decisions for him or her about what you think
is best. It takes constant reminders to give your loved one every
freedom possible. As a dying person begins to lose so much, this
is something you can help him or her hold onto. Hospice continued
to gently remind us of the need for personal choice throughout Franks
Within a few weeks of hospices first visit
to our home in February 1993, we made the decision. After many questions,
reading, and talking, Frank knew this was the right choice for him.
I couldnt have been more in agreement. I was scared and sad
and had much to learn but I felt good about our decision. In the
months ahead those good feelings would turn into a lifelong gratitude
When we first began our actual working association
with hospice in April, Frank was still going to the Oregon State
Capitol every day in his role as a state senator. Two or three times
a week, the hospice nurse came at night to help Frank. Franks
motorized wheelchair allowed him to appear somewhat vigorous and
active at work but each day he grew weaker. His increased weakness,
pain, and breathing problems were not yet obvious to everyone. Our
decision to keep his pending death a secret was still firm.
Once Frank arrived home each afternoon his world changed. Rest and
sleep and pain medication were the late afternoons first requirements.
His food intake slowed down. He had trouble with his vision and
reading. Franks hands became weaker and shaky. Many nights
neither he nor I slept longer than four hours. Hospice helped us
understand all these changes and gave us the information and support
to face what was happening. We always had new questions and they
always offered useful explanations.
As Frank struggled with his increasing physical
deterioration and his determination to complete his final legislative
session, my own personal pressures and heavy job demands added to
the weight of those months. I was in the middle of my first four-year
term as Governor of Oregon.
My days were filled with back-to-back meetings
and conferences, constant decision-making, traveling throughout
the 97,000 square miles of Oregon, recognizing the varied issues
of over three million Oregon citizens, and reading at least a briefcase
full of reports and briefings every night. I also faced a grueling
legislative session in full swing with way too little sleep and
far too many personal worries.
As Franks health issues grew worse, I traveled
less, made fewer evening speeches, and found more ways to do part
of my work at home. My personal and professional responsibilities
seemed constantly on a collision course.
Several times every week I telephoned my two sons
and Franks two daughters to keep them posted on Franks
condition. Most of our five grandchildren were still quite young
and had trouble understanding that their grandfathers illness
was serious. The three grandchildren, all under age five, could
hardly be expected to grasp the fact that Frank would soon be gone
from their lives.
During this time of increased demands for help
and support, Frank and I both felt fortunate to have a dear and
long-term friend sharing our home. Only two years earlier Arlene
had cared for her husband through his long illness and his death.
Now, she was helping us through the same difficult process. Our
respect and love for Arlene grew by the day and our gratitude immeasurable
for this ultimate gift from a friend. To this day, Arlene and I
remain the best of friends.
In June 1993, after months of silence, Frank publicly
announced his latest cancer diagnosis and his plans to resign his
state senate seat at the end of the legislative session. He could
no longer be silent about what was happening to him. The physical
and emotional costs of Franks illness had become so taxing
that honesty and directness came as a huge relief.
Soon everyone seemed aware of Franks situation
and we both talked openly and publicly about his terminal status,
his choice to forgo further treatment, and his decision to make
hospice his final medical caregiver.
In August, only two days after adjournment of
the longest legislative session in Oregon history, Frank began to
have serious trouble breathing. I rushed home from a meeting forty-five
miles away. Hospice came immediately with oxygen equipment. But
it turned out that the hospice counselor who came that day was almost
as much of a lifeline as the oxygen.
Frank had never been in denial about his illness,
but the oxygen requirement was a clear wake-up call that his time
was narrowing. He was very upset and disturbed about it. Our bravery
went temporarily out the window. Frank needed the oxygen but Arlene
and I, too, felt near to hyperventilating. The hospice counselor
talked with us for almost an hour. She asked about our fears and
concerns. We all talked and held hands and cried, admitting how
scared and shaken we all felt. Frank asked questions about what
to expect next, and what further deterioration would be like. He
wondered about being able to leave the house for his retirement
dinner only days away. Arlene and I worried about operating the
oxygen machine. What if the electricity went off? We were frightened
that his need for an oxygen tank meant he could die at any time.
After we talked, Franks courage and emotional
strength returned. But his failing body was ready for rest. While
Frank slept peacefully, the hospice staff again demonstrated their
full support for family members, which is such an integral part
of their caregiving. They assured Arlene and me, as his primary
caregivers, that we had come through the crisis like troopers. We
had faced reality, didnt panic, comforted each other, called
hospice when we needed help, and we did not even hint at moving
Frank into an alternative setting. Although upset for Frank, we
remained committed to keeping him at home until the end. Frank felt
safe and supported, and so did we. All my doubts vanished at that
point. Hospice would be there for us. We would be all right, and
we had clearly made the right choice.
Our reality changed that day. It was like looking
through a pair of binoculars at our situation. Now death looked
way too large and near, and time appeared small and out-of-focus.
During the next few weeks Franks condition
worsened. Even with oxygen his breathing was more labored. Franks
strength drained away and he needed help turning in bed. His retirement
dinner would become his last time out of the house. He understood
it was a farewell dinner. No one in the audience that night doubted
that was the case. The physical price Frank paid for stretching
his endurance to attend was overshadowed by the joy that evening
brought him. Several hundred people came to celebrate his career,
his contributions, and his life. The president of Portland State
University announced an on-going graduate student scholarship in
his name. Family, old friends, former students, fellow senators,
and community leaders praised Frank, thanked him, and expressed
their love and respect for him. Frank struggled through the evening
both emotionally and physically. But whatever the physical cost
may have been for Frank, he glowed in the love of this retirement
After that special night Frank slept more, ate
less, and physically weakened. With his apparent decline and my
increasing anxiety, I read and reread the hospice materials on pending
death and the physical signs of a body shutting down. Some things
I read were not quite clear until I saw them occur, especially when
the hospice staff came daily to bathe Frank. The color began to
leave his legs, moving from toe to knee to hip. His hands were less
warm to the touch. We started to keep someone in Franks room
all night, trying to meet his every need. When he awoke in the middle
of the night, I didnt want him to find himself alone. Until
the end, we were committed to being at his bedside. But when that
time might arrive, was an overshadowing uncertainty.
We shared bedside duty: Primarily Arlene and I,
with help from close friends like Nancy, Chuck, Celia, Roger, Mary
Beth, Laurel, Donna, and Leslie. And on the worst nights, our hospice
nurse, Cecelia, arrived. Hospice staff and I worked with these friends,
explaining how to keep Franks pain under control, talk to
him, reassure him, and in the event of a medical crisis to call
hospice, not 911. Frank did not need a hospital or life support,
and he definitely did not want resuscitation. He wanted relief from
this long ordeal. His wishes were clear, his path was inevitable.
Three weeks before his death, Frank suffered a stroke. Hospice came
immediately. They confirmed he had a stroke and that his speech
was severely affected. Hospice described Franks attempts to
speak as tossed salad. Frank was confused and frustrated.
Hospice arranged for a speech therapist to come the next day to
work with Frank.
Even though Franks body and vision had been
failing, and he was incapable of using his wheelchair any longer,
his ability to speak had remained his outlet, his salvation--and
our joy. Frank was a storyteller, a former speech professor with
a wonderful imagination and an exciting vocabulary. Even on his
worst days, his sense of humor was intact. Now, Frank was unable
to communicate. For me, the day of Franks stroke was one of
the hardest days I faced. I had depended on his words to give me
strength until the end. Now, he could no longer speak.
That day I left Franks bedroom and cried.
It wasnt fair. It just wasnt fair! Didnt he
have enough to cope with already? The hospice nurse comforted
me, held me, and let me vent my pain. Then, quietly and kindly,
Cecelia explained about some of the side effects of a body shutting
down. This stroke, she said, is one of those effects,
just like his colorless legs and his lack of food intake.
A body shutting down didnt need new fuel. A body without fuel
begins to close down. The time was narrowing.
For the next three mornings I made sure I was
at Franks bedside when he awakened. His inability to communicate
made it difficult to know what he understood. So each morning I
explained to him, Frank, youve had a stroke and your
speech is not clear. Well do our best to understand you. Do
you know what Im saying? For thirty-seven years Frank
had taught speech communication as a college professor. So each
morning I reminded him of that life experience in the hope he could
call on that background to understand what had happened to him.
Frank, remember when you studied speech therapy at Madison
and helped stroke victims learn to speak again? Can you help yourself
speak again? Do you think you can do that?
On the fourth morning after Franks stroke,
I was sitting on his bed when he opened his eyes. I went through
my morning routine, explaining about the stroke and reassuring him
that we would work hard to understand and help him. Then I asked
him if he understood about the stroke. He paused a few seconds,
gave me that endearing, mischievous smile of his, and reached his
hand up to my face. Gently running his fingers across my cheek,
he said clearly, Stroke, stroke.
When I shared that story with the hospice staff
over the next few days, we marveled together about Franks
resilience and humor. His speech improved and soon those shared
stories became the buoys that I clung to in a sea of approaching
loss. These stories would become some of my most special memories
of Franks last days and memories of the remarkable bond between
our hospice team and our family.
As the days dwindled to a precious few, Frank
needed more pain medication, more sleep, little food, almost total
physical help, and lots of love. Our caregiving circle read to Frank,
sang to him, talked to him, massaged his back, and added more and
more pillows to his bed. Hospice came more frequently, held more
hands, answered new questions, and readied us for what was coming.
Hospice was clear that the end was approaching and helped us to
prepare for the reality of our impending loss.
There was no denial about approaching death in
the house. Some moments I would wish for all this to end for Frank.
Other times I would sit beside him, watch him breathe, grateful
for each breath. Sometimes in the night, restlessly dozing in Franks
big chair near his bed, I would suddenly get up, draw close to his
bedside, and listen to him breathe. Reassured, I would gently touch
his face. Stroke. Stroke.
Three weeks after Franks stroke, all the
signs of impending death that hospice had described were now evident.
Family members began to gather. But there were no doctors, no injections
or tubes, no intrusion--just Frank, his loved ones, and the hospice
staff who I now thought of as the wind beneath our wings.
The doubts I once had about having the strength,
endurance, and emotional stamina to travel this road with Frank
were gone. Hospice had given me the knowledge and wisdom to make
this precious final journey with Frank in the most gentle, natural,
realistic way possible. Forever, I will be grateful for Franks
decision and hospices commitment to teach me about the art
To the end, hospice was always there for us. After
Frank took his final breath, I looked at our hospice nurse who had
stood at the foot of Franks bed for hours. Our eyes held for
a few seconds. Cecelia nodded yes to me, smiled gently,
and then, as I had requested earlier, walked across the room and
shut off the oxygen machine that had run constantly for two-and-a-half
months. I have never known such silence.
Weeks later, an unusual thought occurred to me.
In every personal situation I have experienced regarding someones
death--my grandfather, my niece, my father--and in every movie and
television depiction of a death announcement, the doctor or person
who delivered the news would always shake their head back and forth
sadly, meaning the person had died. Our hospice nurse had nodded
yes. Yes, he is gone. Yes, this path we have taken
together has led us to the destination we have worked toward for
months. Yes, Franks suffering has ended. I will never
forget her affirmative nod, her gentle smile, and her final favor
so I could hear the silence.
Hospice taught me not to dread the silence.