If you are not already a caregiver for someone with a chronic or terminal illness, statistics say you will be. It’s estimated that there are at least 45 million family caregivers in the United States and that number will keep rising as people live longer. You should assume that at least once in your life, you will be asked or feel obligated to provide care for someone who can no longer care for him or herself. It may be occasional and for a short period of time, or constant and last for years.
WHEN NEEDS CONFLICT WITH VALUES
We all have a tendency to look at the misery of others and think, if only they would believe as I do, they could lessen their pain. Our beliefs are often in the form of “if only” propositions. The core message is, “If only everyone followed the teachings of (place your favorite teacher here) the world would be a better place.” And by extrapolation, the person you are caring for could be more at ease with their chronic or terminal illness if only (fill in the blank with your favorite life maxim).
SERVING NEEDS WHILE IGNORING DOCTRINE
The way I’ve served patients for the past eight years is based more on their needs, than on many of the Buddhist principles that structure my life. I did it with someone who believed the holocaust–where thirty-nine of my relatives died in Auschwitz–was fiction. Even though I have a daughter, I listened without judgment to the sexual exploits of a former member of the Hells Angels who was released from prison so he could die in a hospice. And I did the same with countless others whose lives were examples of how not to live. The mistakes my patients made throughout their lives were powerful incentives for me to change my own, but did not alter my service to them.
A patient noticed the mala (Buddhist equivalent of a rosary) I was wearing on my wrist and asked me what it was. When I explained that it was the Buddhist version of a Catholic rosary, he asked me about Buddhism. Not in a way that was inquisitive, but rather challenging. As I struggled to explain my “practical” Buddhism using centuries-old concepts, I realized my words were sounding like the canned speeches of people who came to my door and wanted to lead me from damnation to salvation.
“I can have a monk visit you and explain it,” I said, since the San Francisco Zen Center was across the street.
“No,” he said breathlessly, an oxygen tube in his nose. “I don’t want to hear any mumbo jumbo for a professional religionist. Just tell me how what you do because of your beliefs can help me die better.”
That was the first of many interactions I had with patients who taught me to see my words and actions through their eyes–the eyes of someone who looked at the world through their illness.
If caregivers are to be effective, they need to understand that almost everything experienced by people they are caring for is seen through the lens of their illness or the certainty of death. It’s a very different world than the one a caregiver lives in. Urging them to look at it through a specific spiritual perspective, as well intentioned as it is, may be counter-productive.
Imagine being dropped into a strange country with a language you don’t understand and customs that are unfamiliar. I experienced this when I was in Prague in the Czech Republic and decided to drive to Weimer, Germany, a four-hour trip away. I didn’t speak any Czech and my German was as inadequate as it was when I studied it in high school. But I did have a GPS that guided me. Without the GPS I probably would still be wondering around Germany. In many ways, the person with a chronic or terminal illness is on a similar journey, but without a GPS.
Before their illness, how they viewed themselves was based on roles, affiliations, values, abilities, and relationships, just to mention some of the multitude of things that constitute “identity.” All of these in combination are used by people to create a picture of who they are, and by other people as they anticipate reacting to them. When an integral part of a person’s life is lost, identity changes, and so does their self-perception and place in the world.
ACCEPT WHERE THEY LIVE IN TIME
I know that the more I remain in the present, the more aware and more appreciative I am of every day I’m still alive. But is that true for everyone needing care? Is it important for everyone to remain “aware” in the present?
For Eric, it was. He stayed in the present during the last two weeks of his life. It wasn’t out of philosophical conviction, but rather because that’s where he was most comfortable. He was dying from pancreatic cancer, had been divorced twice, had a history of drug problems, and had never been able to hold a job for long. But he had an eighteen-year-old son who was devoted to him. Eric told me his son’s love was sufficient for easing his death, and up to the time when he peacefully lost consciousness, our conversations were firmly rooted in the present.
For Mary, her dying was eased when she focused on the past. For twenty years she had been instrumental in changing the lives of poor children through an afterschool reading program. As her disease painfully progressed, she focused on her past accomplishments to make the present tolerable. In her mind, she had made a difference in the world; there was no need to regret not having a future, and the present, devoid of family or friends, was no match for the joy she experienced just by remembering the past.
Although the past and present held equal relief for these two patients, death for those living in the future did not. That was the case with an author who had made significant contributions to the field of journalism and was widely published. Though he had a list of important publications that would have been the envy of most writers, he found no solace in what he had done. With only days left to live, he kept looking for a manuscript.
“I have to finish it,” he said to me one morning. “It’s due on Saturday. What day is it?”
“Tuesday,” I said.”
“Tuesday? How many days until Saturday?”
“Five days! I have six chapters to complete. I need to find it now.” He tried to get out of bed, but was too weak to sit up by himself. Another volunteer and I gently eased him back down.
“We’ll find it for you, Bill,” I said.
We kept searching the room until he fell asleep, but we couldn’t find anything that even resembled a manuscript. Until he died two days later, the most I could offer him in the way of comfort was to sit next to him and witness his anxiety about not finishing the manuscript. After he died, staff, volunteers, and a few of his friends sat around his body and each of us spoke about the impact he made on our lives. I asked a friend who had known him for many years about the manuscript.
“What manuscript?” the woman said.
“Bill said he needed to finish a manuscript by Saturday.”
“There is no manuscript,” she said. “Bill hasn’t written anything longer than a short article in ten years.” For this gifted writer, I don’t think there could ever have been enough accomplishments.
Being stuck in a specific time frame or effortlessly migrating back and forth is based on experiences, values, and needs. For many of my patients, residing firmly in the present resulted in easier deaths. In the present they could let go of the past and relinquish the future. But for others like Mary, nothing could compare with a specific era in her past, and the longer she stayed there in our conversations and her thoughts, the happier she was. Unfortunately for others like Bill, their life was future oriented. Changing how one lives close to the end of life is possible, but difficult. Sometimes the only thing you can do is be supportive of where the person has chosen to reside.
COMPASSION OR UNDERSTANDING
As someone who spends time with ailing with spiritual and non-spiritual patients, there is one principle that guides me more than any other: compassion. Thich Nhat Hanh’s explanation of it is to think of the person in front of you as if he or she was your mother who cared and fed you when you couldn’t do it yourself. With that image in mind, being compassionate with some patients became as easy as breathing. But for others, the mother envisioned by Thich Nhat Hanh took on all the characteristics of the witch in Snow White and the Seven Dwarfs. That was the case with Clarence, who was eighty, born in Alabama, and hated Blacks, Jews, Catholics, and “them damn agitators.” As someone who was involved in the civil rights movement, whose parents were Jewish, and who’s been a lifelong activist, I stood for everything he hated. He was dying and looked to me for compassion. My convictions said, “Give it.” But I couldn’t.
There will be times, despite your best efforts, that you can’t become the compassionate caregiver you want to be. I aspired to be compassionate to Clarence. I wanted to serve him, but thought I couldn’t. I realized that when compassion couldn’t be tapped into, understanding might be. How different would I be if I had been born in Selma to segregationist parents whose great great grandparents owned slaves, and whose fundamentalist religion espoused the superiority of whites, Protestants, and the Confederate cause? It was the circumstances of our lives that had made us different. When you think you can’t be compassionate, try understanding the circumstances of a person’s life. It definitely mutes those parts of it that you find unacceptable.
WHAT’S IN IT FOR YOU?
Tibetans have a saying, that to get over those things you fear most–the sharp points of your life–bring them closer, rather then pushing them away. It’s an idea that many people in Western societies view as counterintuitive. For example, some try to hide from the sharp points of aging by glossing over them, with the same degree of success that a new coat of paint has on stopping an old car’s engine from sputtering. Some who have lost physical or cognitive abilities grasp at what is gone, doing little more than increasing their suffering. And for death–probably the sharpest point of all–we hide from it as if it were a tyrannical schoolteacher coming to discipline us.
Think about the transformative events in your life. I would guess that most, if not all, involved getting past the dragons. Personal growth doesn’t seem to occur when life is pleasant. Few people would say something like ” I turned my life around sitting on the beach in Kauai being served piña coladas.” Just as intense heat and pounding are necessary for creating the highest quality swords, so are sharp points for shaping our lives. Caregiving is one of the sharpest.