Inspired by a 2500-year-old spiritual tradition, Zen Hospice Project encourages and supports a mutually beneficial relationship among volunteer caregivers and individuals facing death. Volunteers work in San Francisco both at the Guest House, a home-like residence providing twenty-four-hour care, and at Laguna Honda Hospice, a twenty-eight-bed hospice and AIDS Unit, located in the nation’s largest public long-term care facility. Each caregiver cultivates the “listening mind” through regular meditation or spiritual practice. This helps to develop the awareness, compassion and balance to respond to the needs of the dying and to hear their stories. Frank Ostaseski, founding director of Zen Hospice Project, says, “As hospice workers, one of our central tasks is to be available when stories are ready to be told.” Recently, the Hospice has begun an Oral History Project in which the volunteers support people who are dying in telling their stories. A volunteer either writes down a story in the form of a letter or, more commonly, records it. These stories are then sent to friends and family.
The following article is excerpted from an interview with Frank Ostaseski by Barbara Gates and Wes Nisker, Inquiring Mind Editors. Barbara Gates transformed it into the final rendition. Names have been changed to protect the confidentiality of clients.
Adele was an old Russian Jewish woman staying with us at the hospice. I got the call that she was dying and came to her room to find her curled over in bed, gasping for a breath. Her eyes were wide open with fear. An attendant tried to reassure her, “You don’t have to be frightened.” And Adele replied through her gasps, “If it was happening to you, you’d be frightened. Believe me.” The attendant began stroking her while she continued to heave. “You’re awfully cold,” the attendant said. And Adele, again through her gasps, replied, “Of course I’m cold. I’m almost dead!”
As I began to attend to her, I listened closely to try to understand what was actually needed. While she was gasping for the air, she was suffering. While she was pushing out the air, she was suffering. In the middle, right in between the breaths, was the place of relief. I said simply, “There’s a place to rest right there. Can you feel it?” In that moment, her attention went to that place, the in-between place. And, for an instant, she rested there. It was as if something washed over her face, her eyes softened and the fear dissipated. She took four or five more breaths and she died.
At Zen Hospice Project, we act with minimal intervention and attempt to meet whatever is arising in front of us. “There’s a place to rest right there. Can you find it?” That was all I said. And she did everything else. She was honest and straight-forward in her process all the way.
Sitting on the cushion we watch the mind do its myriad activities. Hopefully we are attending to it with some degree of equanimity. At the hospice, it’s not appreciably different. We sit at the bedside and we listen. We try to listen with our full body, not just with our ears. We must perpetually ask ourselves, “Am I fully here? Or am I checking my watch or looking out the window?”
At the heart of it, all we can really offer each other is our full attention. When someone is dying, their tolerance for bullshit is minimal. They will quickly sniff out insincerity. There may be material that arises which we don’t particularly like or even strongly dislike. Just as we do on the cushion, we need to be able to sit still, to listen not knowing what will come next, to suspend judgment—at least for the moment—so that whatever needs to evolve will be able to do so.
In a hospice there are lifetimes of stories that have been lived and are now coming to an end. They are stories of grief, of joy, of regret and reconciliation, of reflection and anticipation, of denial and acceptance. For the person dying, as well as for family and friends, telling these stories is a way of preparing. The process of dying involves relinquishing our identities. Telling our stories can give us distance and help move us through the process. Often this is the way we make sense of our lives and discover their meaning. But every story needs someone to listen.
Sometimes when a person tells his or her story, something changes. There was a very sweet elderly Italian woman, Rose, who stayed with us. She came with a prognosis of seven weeks to live. Seven months later she was still with us at the hospice. Volunteers kept describing the same conversation with Rose. Someone would walk in the room and say, “Rose, how you doing today?” With a tone of resignation, she would say, “I just want to die.” Every day the same response. This became a running gag in the house. I told the volunteers, “We’re not taking Rose seriously. We’re laughing at her and we need to listen to exactly what she is saying.”
So the next morning I went into her room and said, “Rose, how you doing today?” And again she said, “I just want to die.” I said, “What makes you think that dying is going to be so much better?” She looked at me as if to say, ‘What kind of a question is that to ask an eighty-year-old woman?’ And I pushed on, “You know, Rose, there are no guarantees that it’s any better on the other side.” And she said, “Well, at least I’d get out.” I asked, “Out of what?” So she began to tell me the story of her relationship with her husband.
As she told her story, it became clear that in the fifty years of this marriage, she had always taken care of her husband, cooked his meals, balanced his checkbook, accommodated his moods. Now that she was sick and dying, she couldn’t imagine how he could possibly take care of her. She didn’t want to be a burden. Better to go to strangers to be cared for. So she moved into the hospice. After she told me her story, we spent some time talking about it. Later, she had a talk with her husband. I wasn’t there for that talk. All I know is that three days afterwards she moved out of the hospice and returned home. She lived at home for another seven months before she died.
As people tell us their stories, we have to really listen, trusting that insight may well arise from the telling. There is a place in the story that will often deliver what is needed. So pay close attention to whatever you are presented with. Start with that. Take it. Believe it. And see where it leads you. In this woman’s case, when she sensed that someone had truly believed her, when she felt really heard, she was able to tell the story which led to her going home. Before she had told her story, she was convinced that her only solution, the only way she could “get out,” was to die. Through telling her story, she realized that her illness and her need to be cared for—what she had imagined to be a burden—was the culmination of her life, a final gift to be shared. She made a reconciliation in her marriage and died at home with her husband and her daughter.
So the basic rule in listening to the story of someone who is dying is to believe that person. Take them literally and, at the same time, try to hear the symbolic language through which they are trying to communicate. There was a fellow who was referred to us by San Francisco General. He had lived in a Tenderloin hotel before he went into the hospital. When I first met him he was restrained in a bed because he had said that he wanted to end his life. He saw no purpose in continuing. So I walked in the room and I sat down next to his bed. I sat there for some time without speaking. Finally he started to speak. He said, “You’ve been sitting there for an awfully long time.” And I said, “Yeah, I have.” And he said, “People don’t sit around like that here.” I said, “Well, I get a lot of practice sitting; but, look, I came to talk to you about staying with us at our hospice. I wanted to know if that would be interesting to you?” He said it might and then went on to complain about the hospital restrictions. I said, “What do you want?” And he said, “Spaghetti.” And I said, “We make spaghetti. We make really good spaghetti. If that’s really what you want, then that’s where we’ll start.”
And we did start with spaghetti. We moved him in the next day and we had spaghetti waiting for him. This guy stayed with us for about three months. Near the end of his time with us, he wrote a letter to the volunteers telling the story of his life when “pain had become unbearable” and “to cry could no longer pacify a miserable existence.” And he told the story of his coming to the hospice and how his life had changed there. Here’s how his letter closed:
“The greatest desolation in my life was the contemplation of a very lonely existence. From the moment I arrived here I knew that a totally new experience of life was about to begin. I knew that there was something about this circle of friends that was about to reveal to me a life that most of us seek but never find, namely one of peace and kindness.”
We had taken him literally and served him spaghetti. And we understood what spaghetti symbolized to him. Spaghetti was nurturance; spaghetti was home. So we served him his spaghetti made with great kindness. He, in his turn, opened his heart and revealed his story. In the midst of it, he found the quality of life he had believed he had lost.
Stories transport us, offer us relief. AIDS dementia or senility is common in maybe 75% of the patients that we see. One of the things that happens in dementia is that we have a short-term memory loss. So we can’t remember what happened a few minutes ago. But often, what happened several years ago, or even longer, is very available to us. There are lots of ways to work with AIDS dementia. Often the most effective way is for the caregiver to remind the patient of what is going on in the hospice at this moment. But, sometimes, it’s more interesting to follow the story.
A very sweet guy came to the hospice. The most pleasure he had gotten from his life was from traveling. Now he was completely bedbound. Martha, a coworker, speaks of how she would sit down next to his bed, and say, “How ya doing, Peter?” He’d say, “Wonderful. I’d like to take you to lunch.” And she’d say, “Fine,” and pull up a chair. “Where would you like to go?” “Paris,” he’d say. And Martha, without hesitation, would respond, “Let’s go.” So the next thing you knew, they were on the Concorde. “I’ve always wanted to fly on the Concorde,” Peter would giggle,”Would you like some more champagne?” Getting off the plane Martha would inquire, “Where are we headed?” He’d say, “The Left Bank.” So off they would go to the Left Bank. Now in a café, he would describe Josephine Baker singing in the corner. They would have an incredible lunch. Martha has said that she would walk away from this experience feeling very satiated and delighted, as if she had actually just gone on a wonderful little trip. And Peter, never having actually left his bed, was equally delighted. The next day they would decide to take a drive up the coast to Mendocino, stay at a bed and breakfast and walk along the headlands.
Martha could have said to Peter, “Remember you’re not in Paris or Mendocino. You’re in your bed. You’re in a hospice. There is an IV line going in. Let’s get real here.” She could have interjected her agenda. But these trips were as real to him as anything that was happening in that hospice. When someone is telling us a story, no matter where that story is coming from, whether it’s coming from a demented mind or a clear mind, it’s real in that particular moment. We have to be able, at least at some level, to believe it and to find the place where we can enter.
Sometimes what people need to tell are the stories of their regrets and their dreams. There was a fellow, Jack, who lived at the hospice. He had been a heroin addict for fifteen years. He’d lived on the street or in the back of his car. He’d thought he had a chest cold and had gone to the emergency room at San Francisco General where he was diagnosed with lung cancer. Three days later he was moved to the hospice having been told that he had less than six months to live. He never went back to his car.
In the course of his stay with us, we encouraged him to write some things down. He said that he’d never done that kind of a thing, but he’d give it a try. Here’s an excerpt:
“Over the years, there have been things put off or postponed because there was always plenty of time later on. That’s all changed now. At least I’ve managed to do one major project. I finished that training to be a motorcycle mechanic. Been making plans to go back to work soon. Then to have this. They tell me less than a year. I’m gonna fool them. I’m gonna make it last longer than that . . . Who am I kidding? To tell the truth, I’m scared, angry, tired and confused. I’m only forty-five years old and I feel like I’m 145. I have so much that I want to do, and now there isn’t even time to sleep as I should. I need to save every moment that I can.”
We often think that grief is about what we have had and lost. Sometimes the grief about what we never got to have is much more profound and much more present. The story of “what we never got” may be the one that needs to be told.
The stories we hear from family members often precede an important shift in their relationship to the person dying. Dusty was the brother of an elderly patient. We had contacted Dusty to let him know that his sister was dying. He hadn’t seen her in twenty years. Dusty was a rough-hewn cowboy, a weather-beaten kind of guy. He had a belt buckle the size of his belly, lizardskin boots and a ten-gallon hat.
In those days, we took care of patients in the residence building at the San Francisco Zen Center. So when Dusty arrived at the door at Zen Center and saw the shaved heads and black robes, his first question was, “What kind of place is this you got my sis?” When we went upstairs to her room, he could barely get across the threshold. He looked through the door, saw his sis, and couldn’t go in. It had been a long time. He’d been out on the rodeo circuit for years. Finally, he got up his courage to enter the room, but only for a few minutes at a time. Eventually, this old cowboy and his sister picked up making small talk right where they’d left off years before. He’d start to talk about his belt buckle collection, life on the road, his trailer. Then he’d leave the room. We’d go downstairs to the garden and smoke cigarettes. Then he’d go back up for a few minutes. And it went like this for days.
One day I said to Dusty, “You know, Sis is getting much closer to dying. If there’s something that you want to say to her, you don’t want to waste too much more time.” It just got slipped in right in the middle of one of those belt-buckle conversations. And he said, “You know, I want to tell her it, but I can’t. I’ve never been able to say it.”
About two weeks later, we were sitting in the garden and he just began to speak. I was about to get up and go do something else, but I thought, “No, I better stay still here for a moment.” That’s when the stories seem to come, when you least expect them. This hard-edged cowboy began to tell the most incredible, and in many ways tender, story. He started when he and Sis were young children. They had lived with their parents until they were four or five when both of their parents had died. They had been split up and both moved to separate orphanages, then later placed together in a foster home. Over several hours, as this story unravelled, he described the horrific life they had as kids—moving from household to household. He also spoke about the kinds of injuries that he had inflicted on her—the abuse, the ways he had abandoned her. There was tremendous embarrassment and shame as he spoke.
Mostly, during this story, all I did was sit still and nod my head. After he had spilled it out and brought us up to that moment, I said, “Let’s go upstairs and see your sister now.” That was practically the only intervention I made in several hours. We walked upstairs and went into the room.
I don’t know if he had ever shared this story with others or not. But after telling it, his manner was totally changed. He said, “Sis, I got something I want to tell you.” In that moment, he was available to her in a way that he never could have been before in his life. She saw it, and immediately there was a meeting that happened between them. She turned to him and offered the most exquisite piece of forgiveness I’ve ever witnessed in my life. She said to him, “Look, I have somebody who bathes me. I have somebody who feeds me. I am surrounded by love. There is no blame.”
For me that’s the power of a story. In telling this story, he was able to meet her in the same vulnerable place in which she was now living. This kind of storytelling is essential to healing, especially when there have been hidden difficulties in the lives people have shared, and particularly if there has been some shame.
After having watched someone die, one might think that the reality of their death would be undeniable. But, in fact, it’s not. Our capacity to protect ourselves is very well developed. Sometimes, in order to truly acknowledge the death of someone we love, we need to tell their story.
A woman had died, and her sister had watched this process of her dying. An hour had passed after the death and I was sitting at the bedside along with the sister. I asked her if she would like to wash the body. And the sister said, “Not yet. She’s not dead yet.” I said, “Okay.” After some time, I asked, “When was she most alive?” This was all she needed to begin to tell me her story.
She started with the tale of an incredible day when, as a twelve-year-old girl, her sister had climbed down into a cave. Then the story of her sister’s life began to unfold, how brave she was, how she later worked in political movements, then became a writer, then a traveler. As she told the story, the woman was able to move through her dead sister’s life, grieving the loss along the way. And the period at the end of the story was her sister’s death. That’s how she had to finish her story because that’s where we were. Then she said, “Now I would like to wash her body.”
Once or twice a year the abbot at San Francisco Zen Center, Tenshin Reb Anderson, comes over to speak with the hospice volunteers. One night he gave a very insightful talk that included the best advice I have ever heard on caregiving. He said simply, “Stay close and do nothing.” That’s how we try to practice at the Zen Hospice Project. We stay close and do nothing. We sit still and listen to the stories.