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Part 1: What is a good death?
A great and clear soul
I recently received a call from my beloved friend and ex-husband
that his mother, Pauline, with late-stage Alzheimer's, is unable
to swallow. In accordance with her living will from more lucid days,
the family has decided not to use a stomach tube, which means she
could die soon. I adore her and I'm desolate, but I support their
decision. Two years ago, after a similar crisis, I asked Pauline
how she felt about dying. She said she felt peaceful. Her serious
serenity convinced me she knew her own mind. At that stage, despite
her deterioration, one could still find a path to her intelligence
and wisdom, a walkway to her spirit. During the year we took care
of her, she never lost her delight in music, her generous impulses
(she hid cookies for us in the waistband of her sweatpants), her
laughter or tears. I asked Pauline once, "What's your purpose
in life?" Her unhesitating answer: "To help people."
Although she is now incoherent and nearly immobile, she has lived,
and is dying, peacefully. When she goes, the world loses a great
and clear soul.
Marie Bloom
Philadelphia
imbloom2001@yahoo.com
Repaying debt to husband
My husband had Parkinson's disease and was bedridden the last 4
1/2 years of his life. I was raised to believe family takes care
of family and didn't hesitate to keep him at home. This was payback
time for all of the wonderful years this kind soul gave me. The
main trick was not to feel sorry for myself, which I didn't, knowing
my husband was the one who was suffering. I also had to ignore the
advice of those who hounded me to put him in a nursing home. Instead,
I listened to his neurologist, who fully supported my decision,
saying I added quality and time to his life. He and my determination
kept me going in spite of being sole caregiver with next to no help.
The day before my husband died said it all. He was paralyzed, couldn't
talk, but managed to mouth the words, "I love you." I
was alone with him when he died, and feel good to know he did not
die alone.
Phyllis Freimark Erdenheim
First, a good life
A good death is the obvious consequence of a good life. It is made
of the contentment that exudes from the reflections of self-examination
at that moment of truth, whether that moment lasts a nanosecond,
or if it arrives at the end of a lengthy period of reflection on
one's deathbed. It is the contentment of knowing it's been a life
well spent: the deeds you've done; the fun you've had and spread
and shared; the lives you've touched and enhanced; the lives you've
left untouched when you could have wreaked havoc by interfering;
the good influence you've granted to those troubled souls you've
encountered. All these and many others add up to a good life. You
are to judge, you and your creator. You prepare for your good death
all your life.
Tom Condon
Philadelphia
There's no good death
The body's shutting-down process is torturous for all concerned.
True, death releases the sufferer from continued distress, but a
good death? There's an oxymoron for you. Primary caregiver, loving,
supportive family and friends, well-intentioned physician and hospice-workers,
we all try to comfort the sufferer. But only one among the participants
in this "death-play" is experiencing what the dictionary
calls "the final and irreversible cessation of the vital functions."
And dying often takes a long time. I've watched it up close. I believe
that the soul leaves the body at the time of death and that there
is life after death, but a good death? There's no way I would try
to sell that one to my grandchildren. They lost their beloved 40-year-old
mother to cancer, and it wasn't a "good death" despite
the loving care and "pain management."
Nanny O'Brien
Spring City
Each plan is unique
It is to die peacefully, clean and warm under a quilt, surrounded
by loved ones in my own room, warmed by fragrant candlelight and
soft music, knowing that I have faithfully completed my hours on
this earth, and now step through the portal to take the hand of
a loving heavenly Father who is waiting to welcome me home. This
is my picture. Yours will be different. It takes individualized
planning to create the picture. It starts with a doctor who will
tell you the truth and enable you to start painting your own picture.
Communication provides the background on the canvas - your wishes
should be heard and respected. Perhaps it will take a team of hospice
caregivers to provide for relief of uncomfortable physical symptoms
(the problems), to guide in the closure of relationships through
good-byes and reassurances of care for those left behind (the people),
and to assist in finding spiritual comfort and freedom (the promise).
Carol Smith Elverson
Realistic decisions
Most people's lives don't end suddenly or accidentally. People with
chronic terminal illnesses need to understand that there are no
miracles in the end, and physicians need to talk more openly. Understanding
that death is a part of life, combined with open dialogue, will
enable patients and their families to make rational and realistic
decisions that focus on the patient's wants and needs. Ideally,
a terminal person should be able to die at home with family and
friends near. Pain management should be key. Patients and families
must realize that when an illness is terminal and end stage, no
one should worry about addiction to pain medication. Pain control,
comfort measures, and family nearby are all fantastic, final gifts.
Judy Mancini Erdenheim
Changing the focus of care
Advances in medical technology have added years of quality to the
lives of millions of people. Many people suffer needlessly when
these same medical interventions extend the pain and suffering associated
with many terminal illnesses. There is an alternative when treatment
is futile and procedures are more painful than the disease itself:
changing the focus to comfort and healing with palliative care.
This focus responds to what is most meaningful to people when time
is limited. When people are free from physical suffering, they can
attend to the psychological, social and spiritual facets of the
final phase of life. They can have the opportunity to live until
the time of a natural death, surrounded by the people who love them.
Quite simply, a good death is one that is not viewed as a medical
failure, but a natural and inevitable part of the life cycle.
Mary Ann Boccolini
President and CEO, Samaritan Hospice
Marlton
Three-part commitment
Our duty to relieve human suffering must be elevated to the same
level as our mandate to fight for life. When a person's life is
at stake, we show no restraint. Why not do the same in the midst
of dying? Let us respond to this crisis, not by promotion of physician-assisted
suicide, but by having health-care professionals make a three-part
commitment to all Americans: You will not die alone. You will not
die in pain. You and I together will face whatever difficulty needs
to be faced.
Vicki D. Lachman
Philadelphia
Part 2: The Decision to Choose Hospice
Visiting angels
When my mother, 93, was diagnosed with cancer, her oncologist recommended
hospice care. Our concerns in caring for her in our home were the
medication we would have to administer, the pain management, and
the personal care she would need being bedridden. With Vitas Healthcare
Corp., we had regularly scheduled visits from Nellie, the nurse,
and extra visits when we needed them. Our mother was thoroughly
checked and lovingly tended each time, and our doctor was called
when necessary. Nellie was supportive from her first visit right
up to her last phone call after Mom passed away. Pat, the young
woman who came to bathe, shampoo, lotion and dress Mom, was efficient
and loving in her care. She cried the last time she left because
she knew the end was very close. Alison, the social worker, talked
and listened. She was there to help Mom face what was happening
and what was ahead. The 24-hour phone-in service was invaluable
and was used often. We always got a solution to our problem. These
women were dedicated to our mother's care and to us. Our fears and
questions were handled by them expertly and with understanding.
I will always think of them as angels sent from heaven.
Marilyn Bailey Berwyn
Spirit flourished
When he needed hospice, my father, a man who had always been in
control, was so sick and debilitated that he couldn't participate
in the decision. It had taken months until his advanced cancer was
diagnosed and even then doctors were unable to relieve his intractable
pain. To get the care he needed, hospice seemed the only choice.
But there was a the catch: 24-hour care required a prognosis of
two months or less. The admitting nurse explained that they might
take him off his heart medication, keeping him only on medications
needed for comfort. We chose hospice anyway, hoping to add some
quality to the little that was left of his life. Hospice solved
his long-standing problem with pain and treated him with respect.
His strong spirit flourished. In addition, though only one in a
hundred patients leaves hospice breathing, my father was the one.
He left, lived and enjoyed life for another year. When his time
was coming, he decided to return to hospice, where he died with
dignity.
Lisa Z. Meritz
Newtown
lisazm@meritz.com
Resistance to hospice
When my mother was diagnosed with end-stage, adeno-carcinoma of
the lung, my own status as a hospice agency administrator with 30
years of nursing experience was of little help to me. My very independent,
77-year-old mother lived in Florida far from my home and far from
my influence. Instinctively, I knew I should find an accredited
hospice, call her physician and ask him to make a referral. My mother,
however, would not consider hospice. We talked and talked and talked.
She informed me of her plans to go to Mexico for alternative treatment.
She began reading books on mind-body connection and focused on curing
her own disease. Privately, she hoped and prayed for a miracle.
Even as she declined in health, my mother would not agree that she
was within six months of the end of life and therefore a good candidate
for the Medicare hospice benefit. I finally convinced her that she
was sick enough to become a home-care patient. (The difference for
her was that home-care patients are expected to make some sort of
recovery.) I hoped that she would establish a close relationship
with a home-care nurse who would convince her to try hospice. She
never did. I was with her when she died. That evening she directed
me to a drawer filled with her private papers. She had arranged
for cremation and signed up to be buried at sea by the yacht club
where she had been a member. As I carried out her wishes, I wondered
why she had been so resistant to hospice. Here was a woman who had
knowledge of all the benefits hospice care could bring to an individual
and the family. Yet she rejected that. Why? Was she trying to put
a good face on her illness for my benefit, or did she really believe
that she was invincible? I will never know the answer.
Tina McMichael
Director of Hospice Visiting Nurse Association of Greater Philadelphia
Having hope
One of the most difficult things about calling hospice is the idea
that you are giving up hope. When my brother faced the end of his
life in 1996, he wanted to be at home. We wanted to care for him
and were told that a hospice could assist us. We located the only
hospice in his small town and set it up. We quickly learned that
hospice is not about giving up hope; rather, it is about having
hope and living until the final moment. The hospice caregivers assisted
us by giving us knowledge about his terminal illness, and supported
our efforts to care for him. When my mom was diagnosed with late-stage
breast cancer two months after his death, we knew to call hospice
immediately. The death of a loved one is never perfect but, with
hospice, it ends up being more bearable.
Alison Miller
Mount Holly
peacecd@bellatlantic.net
A promise to keep After being married for 52 years, hospice
helped me keep a promise - till death shall we part - to my husband.
I was able to care for him at home for weeks while he suffered from
cancer, and with hospice's aid and compassion, until he died in
my arms. Einstein Hospice took the fear of dying from him and those
of us left behind. Please let them be there when my time comes.
Marge Keenan
Huntingdon Valley
makeenan612@mycidco.com
Radiant and grateful smile
My mother celebrated her 90th birthday at her "heaven on earth,"
a Unitarian-Universalist mountain retreat near Highlands, N.C. Nine
months later, she totaled her car as she attempted to return there
for a long weekend. Not being able to drive again, this fiercely
independent potter lost her interest in living. Her last months
were hardly dignified: hospitalizations, round-the-clock "sitting,"
daily care at home, extended visits with sons, falls, much-resented
placement in an assisted-living facility, failure to thrive, pneumonia.
Her death was imminent. The hospital had a copy of her living will,
but, against her wishes, she was given a broad-spectrum antibiotic
to fight the pneumonia. It not only extended her dying, it caused
a serious and painful gastrointestinal upset. I learned of a residential
hospice 30 miles away. After moving her there, the first thing she
did was to try to climb out of bed. "Where are you going?"
I asked. "OUT!" she replied. So I told her that she was
in a hospice run by St. Mary's Sisters of Mercy. "You are not
going to have any more medical interventions," I assured her.
"These people will do everything to make you comfortable, so
lie back and accept their care until you go to sleep forever."
She responded with the most radiant and grateful smile. Just three
days after going to hospice, a great-grandson wished her sweet dreams,
and Oddy Curtiss took her last breath. It was April Fool's Day.
This creative character finally got to exit in a style and humor
of which she could be proud.
Deborah Pratt Curtiss
Philadelphia
dcurtiss@att.net
Part 3: Dealing with Grief
The grateful living
It was October when my husband died suddenly of a heart attack.
I put my longing to "follow" him into wakeful dreams at
night, while by day, in numbness and stupor, I went about the motions
of living. Not long after, our 2-year-old daughter was sitting on
my lap late in the day. We were reading a book together when a cold
wind suddenly blew, rattling the sliding door of our sixth-floor
apartment. We watched whirls of November's last leaves flutter madly
from the trees and lodge on the earth. A dark season is coming,
I thought, hopelessly. I had stopped reading, overwhelmed by the
sense of a barren world. I could see the Art Museum, ever monumental,
and the Schuylkill, ever seeking the sea. Even the leaves, I realized,
would return in the spring, eternal symbol of renewal and hope.
But man, I thought sadly, is simply mutable. Once gone, gone forever.
I had stopped reading, and my child twisted in my lap to look at
me, surely about to urge me to the next line. But I was immobilized.
Any "next line" would be without the joyful presence of
my heart's other half, my husband, her daddy. She must have read
such wistful thoughts on my face. Slowly and deliberately, she reached
up and put a hand on each side of my mouth. The tiny fingers pushed
and probed, sculpting intently until she had formed an upward tilt.
In her sonorous voice, with her serious gaze, she said, "You
can smile at the corners, Mommy. You still have me!" In that
moment, she gave the deepest meaning to my husband's words at her
birth. He had held her to me and said, "You are the love of
my life, and she is the life of our love." Love and life came
together again in our child's sweet words: "You still have
me." And I reentered the world of the grateful living.
Dea Adria Mallin
Philadelphia
Love and perseverance
I had such a hard time dealing with my grief when my father died
at the start of my senior year of high school. I refused help from
anyone. I wanted people to think I was strong enough to do it on
my own. I started drinking by myself and pushing people out of my
life. I was always unhappy, and my grades suffered. Then things
changed me. I found people I could trust to talk to, and I realized
that I was only going to get through the grief if I accepted help
and love from my family and friends. I also learned that it helps
to write your feelings down. Having your feelings on paper and being
able to look back on them really helps. Usually, you don't get over
grief; you just learn to deal with it. You need a lot of love, and
you can't give up.
Shannon Heacock
Hatfield
sfhmustang@hotmail.com
Lasting gifts
My father was a stoic. My siblings and I didn't have daily affirmations
of his love or share conversations about life lessons. Yet what
I came away with from childhood were beliefs that people are generally
good; developing responsibility is not optional; tradition and patriotism
are necessary; music is a source of joy, and friends and family
are life's greatest treasures. My grief will persist for a lifetime,
but tempering it are my dad's gifts. His example was my best preparation
for adulthood and, inevitably, life without him. How can I not move
forward?
John H. Treusch
Burlington
Many ways to help
The world as I knew it ended with the death of my son, Christopher
Marsh-Lawrence, 19. Words fail to describe the "darkness of
the soul" that descended. What helped? People who knew that
they could not imagine what we were going through. People who, despite
not knowing how to comfort, tried anyway. People who wrote cards,
notes, e-mails and memories of Chris. Any remembrance of Chris at
holidays, his birthday, anniversaries. Toasts and prayers offered
in his name. Hearing his name out loud. Encouragement to talk about
him and speak the love out loud. Faith, faith and more faith. Spiritual
books and people who understand when we say he is still close to
us in heart, spirit and love, who accept that we believe we will
see him again. Meaningful work. Accepting we will never "get
over it," but must go on. Love.
Michele Marsh
Havertown
Belief in God
My Catholic faith is the prime reason that I was able to withstand
the reality of my wonderful wife's death. We had shared a beautiful
life for 41 years and had been privileged to watch our children
and grandchildren grow into beautiful people. The early days, weeks
and months after death ends a long and loving marriage are an agonizing
time. Even in a faith-filled marriage, the immediate reaction is
that life seems meaningless. It was only through the compassionate
concern of priest- friends, my deep belief in God's fatherly love
and consistent personal prayer that I had the courage and strength
to weather those first, long bewildering months of desolation. William
J. Swety Schwenksville wdms@erols.com Past and the present
My key to moving forward is honesty. My feelings coexist in harmony.
I am sad. I am happy. I am angry. I am peaceful. I am lonely. I
am loved. My heart is divided in two parts: One is with my husband
and will always be; the other is vibrant, moving and present. The
present is growing and giving loving comfort to the other part.
It has been almost two years since my husband died and the trek
has become easier; the load doesn't seem so heavy.
Carolyn Broll Overton
Swathmore
coverton@comcast.net
Still moving forward
Within a decade, I lost my handsome, talented 25-year-old son to
cancer, buried my dear aged parents, and then laid to rest my beloved,
brilliant husband. I am living each day and moving forward despite
my overwhelming grief and losses. How? Love and trust God - you
will never be alone. Realize that life has changed but it is still
precious - live! Time is not the answer - if it were, how easy grief
would be. Surround yourself only with compassionate and loving family
members and friends. Talk, laugh and cry about your departed loved
one. Reach out to others in the same situation. Take extra good
care of yourself.
Glenna
La Salle
Forgiveness and peace
When my only child was killed by a drunken driver, I was devastated.
I thought my life also would end before sunrise. In an instant,
I went from happy, loving parent, to a grief-stricken bewildered
mother who had to identify her only child. Being able to touch my
child while he was still warm gave me a strange sort of peace. It
was as if he was just sleeping. I said my good-byes, kissed him
for the last time, and ventured into the night. I have gotten through
the rough time by remembering what a wonderful child he was and
how much joy he brought to me and others. He was an honor student,
a volunteer at a soup kitchen, active in church. He loved music,
basketball, his black Labrador retriever and his red 10-speed bike.
When he was 5, he gave me a lucky stone and told me to keep it always.
He said that if I ever needed help, I should squeeze the stone,
make a wish and all would be OK. I carry this little stone, wrapped
in my mother's pink handkerchief, with me always. At the trial,
I forgave the man who drove the car. He did not set out to kill
anyone. It was just a very unfortunate accident that changed both
our lives. Forgiveness brought closure; closure brings peace.
Lorraine Cooper
Philadelphia
Part 4: Communication
Use moments as they arise
My 47-year-old husband has throat cancer. We have three teenage
children. From the start, 21 months ago, we have been honest with
one another and our children about the seriousness of Tom's illness.
My husband and I have found that we have our most productive conversations
while on walks in the woods, sitting by the river, or sitting in
a gazebo in a park near us. These are places that remind us of our
happiest times together, so we feel happy. The discussions have
never been planned. The right times just presented themselves. This
is particularly true with our children. I look for times when I
am alone with each of them and they seem open to discussion - driving
in the car, hiking, etc. Expression of emotion is important and
unavoidable and the shared experience speaks volumes, but it's not
a good time to make decisions. We celebrate the life we have had
together by reminiscing and looking at photos. We have taken advantage
of support groups, visits to a psychologist, support of friends
and family, and prayer. By talking about the fears, we are allowed
the freedom to live.
Jeanne Marie Yohe
Wilmington
tomyohe@csi.com
The silence still hurts
My mother died when I was 13. Today - three children, one marriage
and a career later - her death remains the most significant event
of my life. Although my mother was sick for a long time before she
died, my father never talked to me about her terminal illness. He
didn't know what to say, and he didn't want to hurt me. The result:
There were things I wanted to tell my mom, but I never got the opportunity.
And I suspect there were things she wanted to say to me, too. I'll
never know. Ultimately, the silence hurt more than the discussion
would have. My advice: If it's too painful to discuss and you don't
know what to say, start with, "This is too painful to discuss
and I don't know what to say." Open up. Cry. Hug each other.
Let your emotions take over. Let it hurt. Be uncomfortable. Talk
about it before it's too late for a meaningful good-bye.
Louis Greenstein Merion Station
lgreenstein@comcast.net
No unfinished business
Two months ago, my dad was diagnosed with advanced stages of lung
cancer. When I walked into his hospital room and saw him sitting
there, I knew there was no escaping his dying, and, even worse,
talking about it. We talked around it at first. He said: "Hi,
kid." I said: "Hi, Dad." Then I asked, "Are
you afraid?" He replied, "No, just sad." The more
we talked, the easier it got. My dad died a month after he was diagnosed.
Even though I grieve now, I view his death as a positive experience
because we talked so much through before he died. I don't feel like
I have unfinished business. I'm going home to Philadelphia soon
and I can't wait to sit across the street from Dad's house to look
at his steps. We had some pretty good conversations there.
Mary Zigman
Philadelphia
Be open to wisdom
As a clinical social worker who has worked intimately with many
dying people and their families, I often wonder at the great pains
family members go to to avoid speaking the unspeakable or to deny
the obvious. They say they want to spare the dying the pain such
a talk might bring, but usually it is the family members who wish
to be spared a glimpse into the mystery and finality of death. Not
all who are dying want to talk about their experience, but if they
broach the subject, respond with sensitivity, candor and interest.
Don't blithely reassure them they'll be fine; they know better.
Instead, ask if there are things you might help them get in order,
or tell them some of the things you'll remember about them when
they're gone. For those who seem eager to share, ask them what it
feels like to be dying and invite them to review the high and low
points of their life with you as their compassionate witness. If
they are religious, invite them to talk about what they expect on
the other side, even if you don't share those beliefs. The dying
can be quite philosophical and often wish to leave behind some wisdom
or lessons learned - if we let them.
Mary A. Harris
Philadelphia
marhart1300@aol.com
Ease fears of the process
As a physician, I find discussing death with patients and families
not as difficult as discussing dying. Most people have their beliefs
relating to death, on a religious or scientific basis, but have
great fears of the dying process. The primary fears deal with pain
and the loss of dignity. Another significant factor is finances.
My technique is to gently confirm (what they already suspect) their
terminal illness, to ensure complete and personal care for all of
their needs and to have them put all of their affairs in order (including
will, power of attorney, durable power of attorney for medical affairs,
advanced directive and funeral arrangements). After this, to say
their farewells to family and friends. In this way the patient can
have peace of mind, and the family can have any guilt feelings removed
and celebrate the end of a completed life.
Hymen Kanoff
Wyncote
Plans are made
My husband and I are in our late 70s. We have made our funeral arrangements
(though we didn't prepay) and picked out our cemetery plots. We
have made it a point to discuss what we'd like if and when we become
seriously ill - no respirators. It is all in writing. We are very
definite that we do not wish to be a burden. Five of our seven children
are still with us and we are grateful for their concern for us.
Martie Hackett
Willingboro
Go out as you wish
I am 83 years old. My only child died of cancer and left three beautiful
daughters. I wrote a letter to each of them telling what I want
for my funeral. I recently spoke to my pastor, who had me write
a letter for his files outlining what I wanted. Then I spoke to
one of our choir singers. I asked if she would sing at my service
and told her the songs I wanted. I asked two of my nieces if they
would each do one of the readings at my Mass and a third niece if
she would do the eulogy. My granddaughters have been asked to bring
up the "gifts" during Mass, with the great-grandchildren
if they agree. I've told them what dress and shoes I wanted to wear,
where all the important papers are and anything else I could think
of that will make it easier. Hey, we are all going to die, so why
not go out the way we want?
Mary A. McCormick
Surf City
Celebration of Life party
My mother gave her family a gift. As she lay dying in our dining
room, she informed us she was having a Celebration of Life party
the next day and we were to invite her friends. On less than 12
hours' notice, one week before her death, her family and closest,
dearest friends assembled. She was lying in her hospital bed, dressed
in her most festive hospital gown, adorned with a scarf and surrounded
by dozens of lit candles. Glasses of champagne were raised as she
shared with each person their importance in her life and to each
other - all while the morphine pump eased her physical pain. In
turn, each guest shared his or her love for her and the impact she
had on their lives. The party climaxed (tearfully) with a simple
Quaker song of farewell to a dear, loved friend.
Terry Timberlake-Kinter
Havertown
takinter@aol.com
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