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.

PBS Frontline - Facing Death

Facing Death is an impressive documentary report on end-of-life at the hospital. It is the visual version of Dr. Gawande’s New Yorker article, Letting Go. Only this time the message is directed at us, not the doctors. We are told that almost half of all deaths take place in hospitals and then we are shown just how awful that looks.

The film should be called “fighting death” rather than “facing death” because that is what the people do who are featured in this film. Patients do not want to die and their families do not want to decide for them. They fight death like heroic soldiers in a desperate war. It is wrenching to watch as fragile and failing bodies submit to yet another painful intervention on the wisp of a hope that this time they’ll beat the odds. For most, the end is death, for some it is unconsciousness on a ventilator for unknown years to come.

The medical system is absolved. Although there is always uncertainty, the doctors know the odds and do their best to convey that to their patients. But what can they do in the face of people who don't want to die and families that won't let go? And of course there is always one more thing to be done. And you never know, sometimes patients surprise you.

Throughout the film we are continually reminded of the financial costs of various procedures. Is this why medical insurance is so high? We are informed that the United States is the only country that allows this vast expenditure of resources at the end-of-life. Do you remember the palliative care conferences that were to be paid by medicare until Fox News started calling them "death panels?" They were removed from our new health bill.

The film's vision is true one. Our current approach to death is painful, scary and expensive. See Sharon R. Kaufman's book . . . And a Time to Die -- How American Hospitals Shape the End of Life. Yet I feel manipulated -- by all the images of suffering, the monetary statistics, the compassionate doctors talking to distraught families who resist their advice. The film is intended, I believe, to prepare us for things to come. Big changes in health care are inevitable. The first of the baby-boomer will turn 65 this year. They are the first flakes in the coming storm of aging medical consumers. Our hospital approach to end-of-life will buckle under those numbers. And what will our brave new world look like? I cannot tell you. But I believe that people in this country will need more than fear-provoking film images to change their response to death. They need a palatable alternative, and that the film does not provided.

Films About Life and Death

Below are some films I've recently found in the library and enjoyed.

A Rumor of Angels
There are a number of things to recommend this American film directed by Peter O'Fallon back in 2000. It’s unflinching stance on death very refreshing in this age of doubt and equivocation. The film follows the blossoming relationships between an 11 year old boy haunted by the car accident that killed his mom and an eccentric elder, Maddy, who lost her only son in the Vietnam war. Maddy, played by Vanessa Redgrave, helps the boy face his grief by sharing her own experience. A significant part of this is her journal of communications with her deceased son. “Death,” she is told in heavenly Morse code flashes on the night of his passing "is like stepping off a bus.” The take-no-guff interactions between Maddy and the grieving boy celebrate intergenerational communication, elder-wisdom, and a be-true-to-yourself spirit. It is an uplifting and reassuring film.

The Son of the Bride
This 2001 Argentine comedy/drama about a frazzled restaurateur and his aging parents, is not so much about death as about embracing life. After a sudden heart-attack, this 42 year old divorced man starts to re-think the direction his life has been taking. Fully caught up in keeping alive the restaurant his parent started, he has no time for his girlfriend, his daughter or anything else in his life. Gradually and at times painfully he finds his way back to living. What make this film special are the quirky characters that guide him. The acting and humor are charming in that South American way and the loving relationship between the man’s father and his mother who is suffering from Alzheimer’s is precious. A lot of lessons are learned, both humorous and serious, on the meaning of love, friendship, and marriage.

The Making of Secrets of Life and Death - Part II

In making the film series, Secrets of Life and Death, I was extremely fortunate to be able to interview two people shortly before they died. Rick Fields was a practicing Buddhist and the author of How the Swans Came to the Lake; A Narrative History of Buddhism in America. Tighe Foley was a young man with HIV. Rick’s willingness to be interviewed is not all that surprising. Contemplation of death is a Buddhist practice. Death is impermanence, the nature of all existence. Resistance to change is the source of suffering. Accept change, accept one’s own inevitable death and reduce suffering. I like Buddhism because it is practice-based, not faith-based. You don’t have to believe in God or an afterlife or anything to receive its benefits. Another part of the practice is being of service. Rick agreed to an interview even though he was barely two weeks away from his death as an act of service. He finished his interview saying, “You may as well spend your life helping people. What else is there for us to do.”

I believe that Tighe Foley also wanted to do something meaningful when he agreed to be interviewed for the film. Although a practitioner of the San Francisco Church of Religious Sciences (now The Center for Spiritual Living), he also studied Buddhism. So he certainly absorbed many of its concepts about life and death. But I think his being gay was also part of his willingness to be interviewed. Because of HIV, because so many young men died from this disease, the gay community did a lot of work around dying. They did workshops with Anna Halprin and other therapists. They explored self-assisted death with the Hemlock Society. They wrote plays and did artistic works on the subject. There is a gay person in each of my three films. I think we owe them a lot for all the road maps and trails they have given to guide us.

A year into my filmmaking, I volunteered for hospice. I wanted to have more first-hand experience with dying. I also hoped it might provide some additional leads for my film. The results were so much more. Hospice is required by law to address both the spiritual and medical side of dying. Similar to the Buddhists, hospice provides a generic, nondenominational kind of spirituality that anyone can embrace. But here the focus is more on completing life, finishing up loose ends and saying goodbye. From hospice I learned about the communal aspect of dying – the family of the dying; the nurses, social workers, chaplains, volunteers, aids and others that assist the family; and the community of people I’ve met at team meeting, volunteer trainings and social event that support all of us in our work. It was such a relief to be around people who were not only comfortable with the subject but also understood what I was doing as a filmmaker. Hospice not only provided encouragement for my films but insight into why I’ve spent so many years of my life making and sharing them. It is, I have discovered, both a practice and a healing. But, you’ll have to wait for the last film in the series, Healing Loss, Helping Other, for that story.

The San Francisco Day of the Dead was another source of material for my films. It is one of the principal characters in the third film, The Heart of Grieving, but not as history or cultural underpinnings. There are no interviews here about the Day of the Dead, just emersion into its exuberance, celebration and embracement of death, in its parades, its costumes, its altars and other events. The Day of the Dead, brought to the Bay Area by Mexican immigrants many years ago and now thoroughly imbedded into San Francisco culture, teaches us a different way to deal with death. It brings death out into the open rather than hide it -- to play with it, to be creative, to immerse yourself, to laugh as well as cry. And that’s what it brings to my film.

Not all the people I interviewed make it into the films. This was not because they were unworthy, or their stories were not good enough, or they did not teach me something. They simply did not fit with the other stories that were central to the films. I recall, early on in the editing process, having a dream about a yard full of baby chickens running all over the place and my not being able to corral them. That was my film.

Originally I planned to make a single film with four parts. My editor, Elaine Trotter, the person I hired to tweak my editing and make the film more professional, told me that what I planned would not work. I would either have to rethink all my editing or break it into four films. I struggled with this information for months. I tried reediting and reediting. But each time the film lost something of its heart and so I would abandon it. Then, while co-facilitating a hospice support group, I decided to screen the films for the group members. They loved all four films. They told me to stop dithering and get them out, as is, four separate films. And that is what I have done.

I thank all the people who helped me make these films, particularly those who do not appear. I have learned from you all and I am grateful. And don’t be surprised if one of these days you find an excerpt from one of those neglected interviews streaming from my website, encouraging others to share in cyberspace and expanding the dialogue on this vast subject we call death.

The Making of Secrets of Life and Death - Part I

The film series, Secrets of Life and Death is, in way, a personal documentary about my own journey of healing and transformation after the deaths of my parents. Each film begins with my questions about some facet of the dying process and closes with my observations. In between are the stories of the people who taught me. The films do not pretend to have all the answers, only the answers that worked for me. They are simply a starting point, an invitation to others to share their own stories. This is my story. Does any of it ring true for you? What is your story and how is it different? Tell me so we may all learn from each other.

We are, most of us, uncomfortable with death. It is a difficult subject to explore, on or off camera. Being willing to be interviewed for a film, any film, is a matter of trust – trust that you will be respected, not misrepresented or misused. My focus on death took trust to another level. Death is secret, intimate, and private. In some ways it is a lot like how we used to be about sex, only without much promise of pleasure or titillation. Death is emotional, often unflattering and frequently downright ugly. Who would want to expose themselves that way? Not too many people. I got a lot of no’s, even from people working in hospice.

I began working on Secrets of Life and Death, with a single thread – a book called Who Dies. Shortly after my mother passed, a friend handed me the book and said it helped her when her father died. The book, written by Stephen and Ondrea Levine, was exactly what I needed. Death, it explained, is not failure, not a punishment for eating the wrong things, failing to deal with psychological issues or insufficient positive envisioning. Death is the culmination of life, the goal, the final passage of a spiritual being. And dying, the journey from life into death, is a profound time for healing and transformation.

A few months after I read Who Dies, I saw Stephen and Ondrea speak in San Francisco. I contacted them by letter. It was a bold move. I had just decided to make my documentary. It was my first and I could barely sputter the words, “I’m making a film about death.” Although they declined to be interviewed having recently retired from public life, they kindly pointed me in the direction of a whole cadre of death pioneer living in the Bay Area.

Ram Dass had worked with Stephen and Andrea in the 70’s to explore conscious dying through the Living/Dying Project. A decade later, Frank Ostaseski founded The Zen Hospice Project to serve the local homeless population and refine the spiritual practice of accompanying the dying. Expressive arts and movement artist Anna Halprin used dance to heal her own cancer then lead numerous transformative workshops for people with HIV. Rachel Naomi Remen, co-founder of the Commonweal Cancer Help Program, has been helping bring spirituality to the practice of medicine and treatment of cancer for thirty years. I contacted every one of them and each of them helped me either by being filmed or by referring me to others.

Early on in my interviewing process, I realized that I did not want to make a film of lecturing experts. I wanted personal experiences that came from the heart. I wanted a film people could connect with, that would take them deeper into their own feelings about death. I wanted stories they would remember. I was able to get this sort of personal revelation from Ram Dass and Frank Ostaseski and so they appear in my films, not as experts, but as people struggling with the challenges of death like anyone else.

In Part II, the journey continues with the others willing to address death -- hospice, Buddhists, the gay community and the San Francisco Day of the Dead.

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

A recent New York Times Article: Helping Patients Face Death, She Fought to Live, tells the story of a 40-year old palliative care doctor who, when it came to her own end-stage cancer, was not able to follow the advice she gave her patients. She could not accept her impending death, did not get her affairs in order or sign up for hospice or other palliative support.  Instead, she took on increasingly more aggressive cancer treatments, when standard medical practice advised against it, in a desperate bid to stay alive. Her choice added substantial suffering to her final days and, because she refused to admit she was dying, her friends and family were never permitted to say good-bye. Did she miss out on dying well? Clearly for her, it was the only way to go.



The choice is never easy. How does one ever know when it is time to stop fighting and surrender to death? A good medical fight can add years to your life. My sister, a 14-year breast cancer survivor, is proof of that. The story of a friend of mine with pancreatic cancer is less clear. While she did survive most of the three additional years promised by her surgeon, she lost the ability to digest her own food, never returned to work, and spent much of her time in bed reading. Was it worth it in terms of the cost both physical and financial?  I think her daughter and husband would say it was. Knowing what she went through, I am not certain I would want to make the same choice. But then one rarely knows in advance the real impact of such medical decisions. Surgeons can be a bit hazy on what they mean by quality of life, giving a medical perspective rather than a clear picture of what it will be like to live  from inside. The question of what to do is further clouded by our mass cultural phobia about death. If there is no afterlife, which a large portion of the population believes or fears to be true, than the fight to continue living even a little bit longer might seem worth it whatever the cost.

Adding to the confusion about when to die is medical technology that can prolong life long after the body has lost it's own capacity to sustain itself; and by a medical system committed to preserving life; and by a reimbursement plan that encourages intervention over allowing nature to take its course. Treatment is reimbursable, dying is not. CPR, ventilators, heart/lung machines, blood pressure drugs, intravenous and stomach feeding can be wonderful and life saving tools when they snatch us from the jaws of death and restore us to our previous state of health. Less wonderful for the frail and elderly when ribs are broken and hearts are shocked in a final and futile attempt to stave off death, or when unconscious life is sustained in a "zone of indeterminacy" -- neither dead nor alive, while doctors equivocate over prognosis and families are unable to call an end to "heroic" measures. Still more disturbing is the macabre practice of warehousing patients, sometimes for years, in special hospital units on life maintaining equipment, because heroic measures saved them from death, but in a condition too reduced in mental and physical capacity to ever reclaim independence or even conscious thought. Then the question of cost may give us pause. Would you want to live that way? For a stunning account of the impact of medical technology, Medicare reimbursement policy and the hospital system on the way we die, see Sharon R. Kaufman's book . . . And a Time to Die -- How American Hospitals Shape the End of Life.

Once again I invite you to share your stories, thoughts and opinions. How far would you go to preserve your life? Do you believe in an afterlife? What are your fears about dying, if any? Do you have a medical directive in case you are unable to make your one medical decisions?

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.