Conversations on Death and the End Game

Recently, my in-laws came to visit. Both parents are in their mid-eighties. My mother-in-law has just been diagnosed with breast cancer. It has been on my mind for a while now to get them to discuss their end-of-life plans. This latest news made it seem all the more imperative.

AARP Magazine just had a story about a family whose elderly mother had an unexpected fall and broke her pelvis thus ending years of independent living. It was a sobering story of the trials of finding a placement that would not crush her spirit. Neither my husband nor my sisters-in-law have a clear idea about what their folks want regarding this issue. I thought I might be able to get the ball rolling. Death and caring for the dying are, after all, the subjects of my film series, Secrets of Life and Death and numerous workshops, classes and trainings I have given around them.  The family visit offered an ideal opportunity to finally bring up the subject. Both parents, one sister and  brother all in the same place. What could be more perfect? Except, it never happened!

I discovered that it a lot harder to "start the conversation" with my own family then with perfect strangers. There's an emotional component that figures in. My mother-in-law was already showing discomfort with my initial query about her cancer treatment. Her short worded answers and insistence that she doesn't think about it because, "What can you do?" indicated to me that she was struggling to keep herself together. I certainly didn't want to distress her further. Years of socialization around avoiding unpleasant subjects and not hurting feelings stepped in. Asking her to think about being so sick she could no longer care for herself was not something I relished bringing up. Not when she was already having to think about having cancer. And weren't we having such a nice visit? Well, I just couldn't do it. But really, the truth is, the conversation needs to happen. So this morning I mailed her the AARP article on caring for parents and a note suggesting we have a discussion. Shortly after, I was told about her latest doctor visit and the likelihood of cancer in her kidney as well as her breast. Bad timing or good? We will see.

After the deaths of my own parents in 1998, I launched into making a film on facing death. I found very few people willing to discuss the subject while my parents were dying, so I made it my quest to help people lose their fears about dying by providing them with an opportunity to talk about their concerns and share their stories. Things are always less scary when you stop resisting them. The film I began in 1998 blossomed into the three-part series, Secrets of Life and Death. My film making efforts predate Bill Moyer's series, On Our Own Terms, by two years, although he finished his way before I did. Recently, I discovered, that someone else had also beat me to the punch. A very amazing woman named Ganga Stone wrote a book called,  Start the Conversation, which shares the courageous steps she took to help people, many of them with  HIV, face and embrace death fearlessly.

"Listen," she says in the first pages of her book, "Death is a transition. We all survive. Of this I am absolutely sure."

"Wow!" I thought, "she believes what I believe about surviving death, only she's not afraid to say it."

Well, actually I had been sharing similar ideas during many of my community film screening/workshops. People who come to my workshops tended to self-select. Until, that is, I began doing workshops for cancer patients. They come for different reasons. They come because death has left it's calling card. During one of these workshops, a young woman announced. "I have inoperable cancer , I don't believe in an afterlife and I am mad as hell. . ."  It was almost as though she was challenging me to tell her something different. I deflected by asking others in the workshop to share their thoughts. What could I say? I'd be mad as hell too if I thought everything stopped the moment I died. But I could not hope to convince her otherwise in the short time of our workshop. And who was I to even try? Instead, I acknowledged her right to be angry and kept my thoughts on the matter of an afterlife to myself. I spoke, instead, of the elasticity of time and the possibility of living a full life in whatever time remained. I told her that none of us really know when we will die, even her. Any of us could get hit by a bus on our way home, tonight. No offense to the San Francisco transportation authority intended. I did not bring up the subject of life after death. Was my choice correct -- not to challenge her beliefs? Ganga's book had me rethinking my response. Was I helping her with my silence?" Was this person looking to me for something more? Is that why she came to my workshop?

Ganga's book is fresh and sassy and tells the truth with no apologies or equivocations.

Body Lease: one body, brand new, for temporary use only, may lose functionality over time.
Terms: expires at any time anywhere, at manufacturer's discretion, with or without warning.

That's the contract we're born with. But we all think the contract says "Body will function optimally throughout term of lease and expire during sleep at the ripe old age of 99." And don't we feel a little cheated when things work out differently, as though we were sold a defective car and nobody is honoring the warrantee!

After shocking us out of our delusion about a long happy life, Ganga goes on to reassure us that unlike the body, the spirit, the being we really are, does not cease at death. Read her book and you might change the way you feel about dying. That's her promise. Since I already agree with her, I can not confirm this for the non-believers out there. It certainly provides some interesting proof.
As evidence, she points to the experiences of over eight million near-death survivors, from all walks of life, religion, race, social and educational level. Not only are there stunning similarities in all their stories, but more importantly everyone of them now lives without fear of death. The smoking gun, however, the incontrovertible proof that we are not our bodies is the the story of the sneaker on the ledge. Briefly, it's the story of a woman, who, during a temporary departure from her body while clinically dead, sees a sneaker on a ledge three stories above the operating room where doctors struggle to restart her heart. The existence of the sneaker is confirmed by an impartial witness shortly after she returns to life. There is no way she could have seen that sneaker from outside the hospital, from above or below. No way to know it was there, unless, she really did separate from her body. Interestingly, I had the story personally verified by a friend who interviewed the witness in the tale -- the nurse, who confirmed the existence of the sneaker on the ledge.

There is much more to Ganga's book then near death experience stories, compelling as they are. It is a whole program for changing the way you think, the way western medicine and the scientific community encourage you to think, about life and death. She is vehement in her crusade to change us. Our annihilation theory of death causes too much suffering, too much fear and grief to let it stand unchallenged, she insists. Time for change. And with the publishing of this book she takes her work to another level.

You might have noticed there is more than one conversation here. There is that ever so engaging discussion about whether we continue to exist after we die, complete with divine light and cosmic consciousness. Then there's the nitty gritty of getting there -- the medical treatments, the indignities of institutional living, the awful food and long hours of incapacity.  It was this second conversation that I found difficulty starting. But don't kid yourself, the other one lurks just below the surface. With the latest news about my mother-in-law's kidneys, we were all wondering whether this is, in fact, the end game.

After some reflection I decided I did the right thing with the woman at my workshop.  I am not Ganga. I have my own more modest vision when it come to starting the conversation. It is enough for me to provide the space for people to discuss their beliefs, fears and experiences around death. It's good for each of us to come to our own conclusions.

Asking for help

For nearly eight months after my father was diagnosed with Alzheimer’s, my mother cared for him at home. He had been going down hill for years, but we stayed in denial as long as we could. So by the time his disease was recognized it was quite advanced.

In the years before his diagnosis, my mother accompanied him to college classes and wrote most of his papers. It was my father’s heart’s desire to earn a college degree. But as his illness progressed, the demands of his schooling coupled with the demands of his caring became too much for her. She final begged his physician to tell him he could not continue school, because she was unable to stop by herself.

After his diagnosis my father deteriorated rapidly. It was as though; now that we knew the truth, he could relax and let nature take its course. My mother tried putting him into a daycare program but this was short-lived. An educator by profession, my father began lecturing the other patients with nonsensical strings of engineering phrases. When they failed to pay attention he got angry. The staff could not handle his tempestuous outbursts and soon he was expelled.

Home all the time, my father was a handful. Like a large baby, he had to be dressed, bathed and fed. Several times he wandered off from home and got lost. Later, he became incontinent and unmindful of where he did his business. My mother, blind in one eye from a brain tumor surgery and fighting a recurrence of breast cancer, began to show signs of the strain.

I arranged to have a home health aid visit once a week. This proved unsuccessful. My mother treated the woman like a guest. Thursday mornings were spent scurrying around trying to get my father cleaned and the house presentable before the aid arrived. I asked my mother to let the aid help her. But she could only let the aid sit with him while she attended to other tasks.

Finally I was able to get my father into a respite program that placed him in a nursing home for three days while my mother enjoyed a needful break. Of course he never came home again. Only by stopping was my mother able to realize that what she was doing was impossible.

My mother’s handling of my father illness was neither unique nor unusual. It is not easy to ask for help and equally difficult to accept it. I understand this because I hate asking for help myself.  Partly it’s that ethic of rugged individualism, declaring independence and self-reliance. Also there’s a touch of pride, the assumption, perhaps rightly, that no one can do it as well. And then there is the privacy issue, a strong aversion to hanging out “the dirty laundry.” And let’s not forget the fear of being turned down. A friend of mine recently had a bout of food poisoning that gave her a serious scare. When I asked why she didn’t call me, she countered that she had asked help from a friend who turned her down and was afraid to try again. And don’t we always pick the person who will confirm our worst fears!  However, when it comes to caring for the dying, it is essential that we learn to ask for help as much and as often as needed.

Caring for a person who is dying is not a solo sport. There is simply too much for one person to do: medical appointments to attend, scheduling to arrange, equipment and medicines to procure, new treatments to research, family members to update, and on top of all that, the daily list of a normal busy life. When a dying person becomes bed ridden, the list can expand to include bathing, toileting, moving and adjusting, daily laundry, special meals, drug administration, wound tending and continuous monitoring.

And then there's the emotional component. When my mother was dying, I went back to help her tie up loose ends.  She was sharp of wit, ambulatory and able to handle her own hygiene. All I needed to do was drive her around and fulfill her requests. I don’t think I even did much cooking. Yet very soon, I became an emotional basket case. Was it the cats peeing in my bedroom, the constant blare of the radio, the deer-in-the headlight looks from my brother and sister-in-law as they disappeared into woodwork in their part of the house, or was it that heart wrenching moment when I asked her about tossing a photocopy of one of her sketches and she sighed and said, “I guess I’ll never get to that project.”? My back went out ten days after I arrived and I was on a return flight to San Francisco in less than two weeks. The relationship with my mom was admittedly tricky.  But whose isn’t?

I found helping my friend Marianne to be a much better experience -- partly because I knew the terrain, but mostly because our team was better organized. It also helped that she was in the hospital with all her bodily needs handled by professionals. You could not ask for a more grateful and gracious patient, but watching her suffer was awful. Coordinating with her brother and sister-in-law, her nephew, my husband George, and numerous friends, we were able to be with her most days, and many nights. In between we sorted through her possessions and dismantled her apartment, a very weird thing to do while she was still alive, but necessary given the time constraints of her out-of-town family. Our deathwatch lasted barely two weeks, and yet we were all spent when she finally died.

Asking for and accepting help is essential to a caregiver’s health and survival. Becoming comfortable with it takes practice and a change in thinking. You need to keep reminding yourself that you can’t do it alone, and that trying to do it alone is foolish and dangerous. Exhaustion leads to mistakes, to accidents, to errors in judgment, to illness and even death. If you become sick who will take over? Consider that learning to receive is part of the soul’s journey and certainly part of getting older. It can also be a profound gift that helps us bond with one another. It can deepen our relationship, love and affection.

If you have aging parents, or frail siblings, consider doing some advanced planning. Have a family conference, discuss what is be needed and who is willing to do what. Those who cannot be physically present may assist in others ways, e.g. money, administrative, research and communications.

Friends can be an important resource. Cultivate your friendships with kindness and generosity. Some  will be able to help and others will not, and you can never know which ahead of time. When you do need their help, make a list of tasks covering a wide range of commitment levels so that people may participate, as they are able. Tasks like preparing meals, grocery shopping, housekeeping, gardening and laundry come to mind. You can organize using the website Lotsa Helping Hands. Some people may find the technology off putting. So try a variety of strategies and use whatever works.

If you find you have time to breathe, to go for a walk, take a bath or get a decent night’s sleep, you’re on the right tack.

A Time to Fight or a Time to Die? Part I

When my friend, Marianne, had a recurrence of a particularly nasty cancer, she fought it for all she was worth. She was only 53 and not ready to die. Her oncologist told her it was time to sign up with hospice, instead she plopped down $4,000, crossed the Mexican boarder and returned with a bag load of experimental drugs. Unfortunately, she never could take them. She was already too sick. The doctor who facilitated this venture from his practice in San Diego failed to alert her to this fact. Such "experimental" or "alternative" doctors abound at the end of the line, exchanging hope for a pocketful of money.

She had cyber knife surgery to reduce one of her tumors and give her some additional time. It blew out both her kidneys and increased her chances of renal failure. The surgery may well have been palliative as the tumor was causing considerable discomfort. Whether it actually gave her extra time or reduced it, is anyone's guess. Over the next month, she entertained each of her three sisters and her brother in her tiny home and got to say goodbye.

Toward the end, her body kept swelling from lymphedema and she could barely walk. Yet she continued to hobble to work up until the day she checked into the hospital for the last time. Semi-coherent from an infusion of pain-killing drugs, she blurted out to a group of us that she still thought she might make it. She was finally moved to a hospice facility, mostly unconscious, three days before she died.

Three days is not much time for hospice to do its job. Hospice is about helping us die. And a lot of hospices are very good at this. A whole team of professionals come by your home to ease your suffering--nurses, social worker, chaplain, volunteer, home health aid. They work with pain of the mind and spirit as well as the body. There is no need for pain as there are many effective drugs, many effective strategies.

Dying can be a powerful time for healing and personal growth. See my film, Facing Death . . . with open eyes or read Ira Byock's book, Dying Well, for some wonderful stories about this process. Ira identifies four things people need to complete in order to "die well": forgiving others, asking forgiveness, expressing love and gratitude and saying goodby. Not too hard a list to remember, but not always easy to accomplish, especially if you choose to fight death until the bitter end. So many people do choose to fight, a little too long, until, like Marianne, they are no longer conscious. The average stay in hospice continues to be about two weeks even though a qualified person is entitled to up to six months. Medicare pays for it all if you're over 65 and many health insurance policies cover it for the younger crowd. It's a shame to lose out on this highly beneficial service.

In part two, I look at heroic measures to sustain life and the hidden costs of delaying death. Please share your thoughts and opinions about how we might best prepare for death.

Green Funeral Fair

After a month of speaker events on death, Grace North Church of Berkeley culminated their ground-breaking (pun intended) program with a Green Funeral Fair.

I shared a booth at the fair with the volunteer coordinator, Merry, from Sutter VNA & Hospice where I am a volunteer. She was pushing advanced care directives and telling people about hospice volunteering. I brought a laptop with my film trailers and some DVDs. Didn't manage to sell any DVDs, but met a lot of nice people.

Vendor booths were all upstairs in a large room. On display: eco-caskets, funeral shrouds, home-based funerals, memory markers, high end art object urns, obituary writing help, books on death, caregiving and organizing, and more. I'll be sharing more information on these booth in subsequent blogs. As a tease, I've given you a couple of links. Stay tuned.

In addition to the upstairs room with all the vendors, the church sanctuary below had a full day of events and activities including: mask making, coffin painting, sugar scull decorating, wheat weaving, paper-flower constructing, live music, a sing-a-long with the Threshold Choir and a funeral hat parade and contest which I participated in, but unfortunately didn't win. Too bad. It was a $150 prize. The woman in the black veil won. There was a prize for the men too. With only three male entries, a much easier competition.

I had a great time meeting all the vendors. You can see my photos on my facebook site for Secrets of Life and Death (I hope the link works, if not, just search for Secrets of Life and Death in Facebook).

Congratulations to Grace North Church on trying something very different. Hope they do it again next year.