Transcript Dealing with Death or Catastrophic Illness: Learning from

Dealing with Death or
Catastrophic Illness:
Learning from
Experience
Class of 1977 Reunion Panel
Dartmouth College
Hanover New Hampshire
June 16, 2007
Why Did We Have This Panel?

Because “life is what happens when you’re making other plans.”

Because, in the words of Ira Byock*, “many of us have come to realize
that death and dying are no longer mere abstractions.

“We have already taken care of a grandparent or a parent who was
dying.

“Some of us have helped care for a dying sibling; others of us have lain
beside a dying spouse.

“Some of us have even cradled children as they died.”

*Source: Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead
Books, 1997, p. xiii.
If We’re Lucky, We’ll Remember to
Say…
 The Four Things That
Matter Most, according to
Ira*
 “Please forgive me.”
 “I forgive you.”
 “Thank you.”
 “I Love You.”
*Source: The Four Things That Matter Most:
A Book About Living. New York: Free Press,
2004.
Dealing with Catastrophic Illness
and Death in…
 A Child: Rich Bane
 A Parent or Parents: Nora Odendahl, Paul Storfer, Allison Grant
Williams, Bob Lawrence
 A Spouse: Vin Pellegrini
 Oneself: Lucy Townsend, Neal Webber, Michael Schuster
 Perspectives: Ira Byock, M.D., director of palliative medicine,
Dartmouth Hitchcock Medical Center and faculty member, Dartmouth
Medical School
Catastrophic Illness or Death of
Parent: Learning from One
Another’s Experience
Dartmouth College
Class of 1977 Reunion Panel
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
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
Nora Odendahl
Paul Storfer
Allison Grant Williams
Bob Lawrence (by proxy)
Hanover, New Hampshire
16 June 2007
Catastrophic Illness or Death of
Parents

Our Families

Practical Advice

Psychological Aspects

Personal Affirmations
Paul Storfer’s Dad: Herbert F. Storfer
 Dartmouth ’44
 Phi Beta Kappa
 Accompanied Doris Day on
The Tonight Show
 Went into the family business – 25
years in Cosmetics
 Executive Search – 25 years
 His love of music led him to start
the Jazz Foundation of America
 Began showing serious signs of
Alzheimer’s in 1995
□
2000
2006
Paul Storfer’s Mom: Maxine P. Conn
 Cornell and NYU
undergrad, with an
Accounting degree
 Professional Writer
2000
2006
 Pick’s Disease became apparent in 2001
 Pick’s affects the frontal and temporal lobes, resulting in
behavioral regression and impulsivity, combined with
severe dementia
 Lost ability to manage finances in 2005
 Played competitive Bridge until 2006, when impulsivity
created social interaction problems
 Current vocabulary ~100 words – “thing back” & “shoot”
□
Nora Odendahl’s Father: Alan Odendahl
 An economist of the Keynesian
persuasion who worked for the
Small Business Administration
 Ardent liberal (“Tax and spend!
Tax and spend!”)
 Native of the Southwest
(Citizen’s Band handle “Desert
Rat”) and friend of Ed Abbey
 Exuberant and immoderate
talker, never lukewarm about any
topic
 Silenced in 1994 by a heart attack
and left unconscious for the last
three months of his life
◊
Allison Grant Williams’ Mother:
Dolores J. Grant
○
 A vivacious woman with a
keen intellect and great
sense of humor
 High School English and
Drama teacher, finished
her education after birth of
her two girls; BA
Roosevelt University, MA
University of Chicago
 Breast cancer survivor since 1968
 Diagnosed with Multiple Sclerosis (MS) in 1987 after
years of erratic symptoms
 Lived with MS an additional 18 years
Practical Advice: Recognition
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Recognizing that there is an illness

Coming to the hard diagnosis

Acceptance
One important lesson is to recognize that your parents and other
family members can develop bad diseases, and to step in and
offer help and guidance early, to try to mitigate problems or
avoid some of the crises that can develop if proper attention is
not paid. Denial and wishful thinking are the enemies of
effective action.
□
Practical Advice: Learn More

Stay informed about the disease and treatment
Seek information and advice from public resources. There is a lot
of information out there, and much of it appears to be accurate.
The progression of Alzheimer's and its various challenges are well
documented and described, particularly by the Alzheimer's
Association. It is at least a comfort to have basic information. It
may actually help postpone or avoid some of the worst consequences.
□○
Practical Advice: Find Help/Get Support
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Understand that the primary caretaker cannot do it all.

Find the best possible outside support. In the early phases,
it is possible to manage a very impaired person as a private
family matter, using doctors, social workers and other
caregivers as outside support. When the time comes, it is
essential to find a place that can provide professional and
consistent care.

Make sure not to be swayed by the elements of a facility that
appeal to you, as the well person, instead of those elements
that are most important to the unwell person.
Practical Advice: Manage Caregiving
 Details of day-to-day living
 household errands and operation
 personal care issues
 administration of medication
 Practical and financial implications of care and
treatment
 medical coverage
 handicap equipment/accoutrements
 medication costs
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Practical Advice:
Take Care of Legal and Money Matters

□
Power and Finance

Legal issues like Power of Attorney and Health Care
Proxies need to be addressed early

Financial Instruments, including Long Term Care
Insurance and Revocable Trusts can be critical to
protecting the overall family’s financial security
Psychological Aspects: Dealing with Differences
○□
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Diagnosis and outlook
 We all cope differently
 We all have additional responsibilities

Family and friends
 Issues not worked out early within the family (care,
relationship and financial issues) can cause significant
issues later
 Friends and extended family may not know how to deal
with the illness – communicating can help
Psychological Aspects: Person versus Patient
 Catastrophic illness radically transforms a person’s
identity and relationships with family and friends
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Emphasizing the Person
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Emphasizing the Patient
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•
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Necessary for your own caring and motivation
Important to the dignity and, eventually, memory of the
person
BUT: Can impair the judgment you need to exercise
Necessary for a realistic perspective
Necessary for making decisions
BUT: Means closing your heart; seems like rejection
 The paradox: Both views of your loved one, as person and
patient, must coexist
Psychological Aspects: Accepting Transition
At some point, realize that you are no longer dealing with the person
whom you knew as ‘Mom’ or ‘Dad’ but almost as someone you do not
know. It is unfair to expect from the person suffering from a disease
like this that they act in any way ‘normal.’ It is difficult and sometimes
frustrating to interact with a family member who is no longer the person
you knew. Getting to a point where you can handle the situation
effectively is almost like accepting death, but is necessary in order to
be able to make the right decisions and care best for the person.
◊
Psychological Aspects:
Seeking Knowledge, Finding Uncertainty
 Medical
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
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Yes, you must learn everything you can from doctors and medical
literature
But the answers that you need may be impossible to obtain
You may need to make life-and-death decisions without adequate
knowledge
 Metaphysical
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Caretaking was so important to us, but did our choices or actions
make a difference?
Did we do what he would have wanted, if he had known?
Were we right to seek every chance for recovery, or wrong not to
let him go sooner?
Again, paradox: Different truths coexist, and some
uncertainties will always linger
Psychological Aspects: Looking Ahead
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Dealing with the future
Diseases like Alzheimer's have hereditary and environmental
elements. One result of this event has been that the children
have reviewed their lifestyles and have made good progress in
moderating some of the risk factors in their own lives. This has
been a positive aspect of the situation, as there is never a bad
time to exercise more, eat better and take better care of yourself
generally.
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Personal Affirmations: Introspection
 Live life
 Bad things can happen, randomly
 Be realistic about the support they will
accept, as well as that which you can
offer
 Examine/re-examine your parents
respective needs
○
Personal Affirmations:
Understand How to Live Better
The most important lesson, of course, is not to take
any day or any person for granted, but to make the
most of each one, and to cherish each important
relationship as best you can while you can.
□◊
Here’s to Life
Jazz classic recorded by Shirley Horn – pianist, composer & singer
(composed by Artie Butler with lyrics by Phillis Molinary)
May all your storms be weathered
and all that’s good get better…
○
CATASTROPHIC ILLNESS AND DEATH:
IN YOUR SPOUSE
aka
“HOW TO BE
A GOOD SUPPORTING CAST”
Vin Pellegrini, Jr., M.D.
DC ’77, DMS ‘79
University of Maryland
Department of Orthopaedics
Baltimore, MD
[email protected]
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
THE STORY LINE
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Jan, 1990 - Lisa, age 32, married 9 years
- 6 months postpartum, daughter #3
- mastitis – bx positive
- radical mastectomy / positive
nodes
- chemorx 6 mos; 18 month “recovery”
- 2 years “disease free”
- 4.5 years after dx – recurrence / mets
March, 1995 - chemo / bone marrow
transplant
April, 1998 - died, age 40
daughters 16, 11, 8
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
THE STORY LINE – POST 1998
Together, we learned how to…
- Buy “our” first bra
- Live through “our” first period
- Put in a pony-tail without “bumps”
- Pick a nanny
- Fire a nanny
- Identify clothes that don’t go into the dryer
- Accept that our family was “different”
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
COMMUNICATE OPENLY
-- If you are thinking about something,
Chances are so is your partner and others
-- Speak about your fears and hopes,
Share your thoughts
-- Secrets and unspoken concerns
create awkward situations
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
LEARN TO LISTEN
Without necessarily having to come up
with a solution
Sometimes you just can’t “fix it”…
so stop trying!
It is OK to just say nothing
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
DON’T FORGET
TO TAKE CARE OF
YOURSELF
Hard to be a good supporter
If you are not feeling
good yourself
Do needed things
for YOU!
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
LIFE GOES ON … YOU MUST ALSO
-- Understand
the process of grief and loss;
denial, anger, bargaining, depression,
acceptance
Kubler-Ross
-- “May the pain of your loss turn quickly into
fond remembrances of your time
together”
CATASTROPHIC ILLNESS and DEATH
YOUR SPOUSE
BE MORE UNDERSTANDING OF OTHERS
Everybody carries unspoken baggage from their home
and personal lives
Colors of the Wind
“You think the only people who are people,
Are the people who look and think like you…
But if you walk the footsteps of a stranger,
You'll learn things you never knew
you never knew”
-- Pocahontas
Catastrophic Illness in Oneself:
Lucy Townsend
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In 1986, my husband had run off to "find himself" with an artist in Palm Beach, leaving
me with three children under the age of five.

I was diagnosed with non-Hodgkins lymphoma.
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Given the cure rate at the time, I was expected to live maybe five years.
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However, there was great hope put in experimental bone marrow transplants for
treatment of lymphoma, and if I could stay alive long enough, I might have a chance at a
cure.
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Many courses of chemotherapy and a dozen wigs later, I was accepted into the bone
marrow transplant program at Dana Farber in Boston.

I provided my own marrow for the procedure as it was free of cancer, but that was the
easiest part. Cancer patients often remark that the treatment is worse than the disease
and how true that is!
Catastrophic Illness: Lucy Townsend
 I was left with some residual cancer after the month or so in the solitary
confinement of my hospital room.
 I was subjected to ricin therapy which involves pumping poison
attached to monoclonal antibodies through the patient's body.
 Sigh!

Several months later, the cancer was back with vigor.
 I was told that I had had enough therapy and would be watched to see
how I might be made comfortable.
Catastrophic Illness: Lucy Townsend
 People often ask me how I got through so many years of cancer
treatment with three small children in tow, and survived this final grim
prognosis.
 I can't say it was any one thing. It may have been any of the following:
 The very best medical care, best medicines, best doctors and most
important, the best oncology nurses.
 Support of family and friends. I needed to get counseling to have the
strength to get my family to get counseling so they could get over their
fears of cancer and help me!
 I learned to read everything you can about your disease and be your
own advocate. I taught my oncologist how to do painful bone marrow
aspirations painlessly, by wheeling in some laughing gas from the OBGYN unit and hooking me up. What had been gruesome was now
hysterical!
Catastrophic Illness: Lucy Townsend
 I tried to keep a sense of humor always.
 I followed a macrobiotic diet (could only manage that for
about as year...I got very tired of garbanzo beans and
brown rice).
 That was followed by...a healthy diet and exercise.
 This is important as it gives one a sense of some sort of
control over one's body when everything else is out of
control.
Catastrophic Illness: Lucy Townsend
 Prayer helped enormously, especially to my step-father who
died of cancer of the esophagus in 1988. He could
convince anyone of anything, and I would ask him to put in
a good word for me. I still do.
 I tried to appreciate every day and never stress out over the
glitches.
 I became a true believer in essiac, an old Indian cure made
from brewing four herbs into a tea, consumed twice a day.
Catastrophic Illness: Lucy Townsend
 I followed the above regimen, and miraculously the diseased lymph
nodes in my neck, arms, legs and places inside became hot and painful.
 Within a matter of weeks, there was no sign of cancer in my body.
 My doctor at Dana Farber said the cure to cancer was in my body; my
own body had somehow recognized the cancer and had an allergic
reaction to it.
 Sometimes miracles can happen. I think they happen all the time.