Dealing with Death or Catastrophic Illness: Learning from Experience

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 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 • 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 • 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 ○

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 • 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 • Emphasizing the Person • 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 • Emphasizing the Patient • 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 • 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 • 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 • 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. □

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 SPOUSEaka“HOW TO BE A GOOD SUPPORTING CAST” Vin Pellegrini, Jr., M.D. DC ’77, DMS ‘79 University of Maryland Department of Orthopaedics Baltimore, MD vpellegrini@umoa.umm.edu

CATASTROPHIC ILLNESS and DEATH YOUR SPOUSE THE STORY LINE • 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 • 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. • Given the cure rate at the time, I was expected to live maybe five years. • 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. • 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 OB-GYN 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.

Dealing with Death or Catastrophic Illness: Learning from Experience