Losing something that gave meaning to life is often a bi-product of chronic and terminal illnesses. It can be the daily jog for someone who has run for forty years, the loss of hearing for someone who played the cello her entire life, or the gradual memory loss of a writer who spent his days in front on a computer crafting short stories.

Most people can look at these losses and understand how devastating they are. But what about something like the inability to knit for someone with crippling rheumatoid arthritis? Or the inability to read the morning newspaper over a cup of coffee as eyesight diminishes?

Unfortunately, the magnitude of a loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered on knitting, the loss is far more devastating then being unable to walk. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit, run, walk, write, or converse may disappear, but its memory is constantly present, sometimes acting as a slap in the face when it’s seen in other people.

Caregivers try to be supportive by presenting “but look” arguments. “Yes, I know you can’t jog anymore, but look at what you’re still able to do.” But how convincing can that argument be when the activity or ability that was lost was a central feature of a person’s life? Ask anyone who has had a significant loss in their life what they think about “but look” propositions. The head knows that it makes sense to relish what they’re still capable of doing, but the heart mourns the loss.

We get enjoyment and fulfillment, not from the thing or activity itself, but rather from the emotions it stirs in us. For example, I did solo wilderness fly-fishing throughout my adult life. It was the most enjoyable activity I ever did. When I no longer was able to do it because of my cancer treatments and a chronic sleep disorder, I mourned its loss as if it was a loved one who died.

My head knew that I was fortunate that one group of medications was containing the cancer and another was allowing me to sleep. And not going into the wilderness alone was a small price to pay for sleep and life. But my heart still longed for it. I eventually realized that it wasn’t the act of fishing in the middle of a pristine river that I missed, it was the serenity I felt being there. When I realized that, I sought other activities that could engender the same or similar feelings. I found it in playing various wooden flutes. Was it the same? Not really. But it allowed me to partially fill that pothole.

When your loved one laments about losing something that was of great importance, avoid using a “but look” response. The remorse they’re expressing is coming from their heart and it needs a heart response rather than a head one. Instead, begin exploring what it was about the activity that made it so important in their life. Once the emotions have been identified, jointly think about what other activities may generate ones that are similar. Often the answers are found in very different activities, as it was with my substituting playing and crafting flutes for wilderness fly-fishing.

As your loved one’s illness progresses, you’ll find that what works today may not work tomorrow. Look for something that may be do-able throughout their disease progression. If both of you realize that what they have chosen will only be possible for a short period of time, still do it, but think about what can substitute for it. For example, an ALS patient I served loved ambling through Golden Gate Park in San Francisco. He lived only a few blocks away and would spend hours there every day before he was diagnosed. As the disease progressed and he no longer could walk, I would take them to the Rose Garden each week in his wheelchair. When he was confined to a bed, people who visited would come with a flower they picked from the park.

Any loss that a loved one maintains is substantial, by definition, is. Accept it as valid and jointly explore substitutes. Chronic and terminal illnesses are rarely stable. As they progress, your loved ones’ identity will continue to evolve. Hoping that the person you knew before the illness is the same person who has lost meaningful parts of their life may be a wonderful spiritual ideal, but it’s rarely comforting to the person who has suffered the loss.

Excerpt from Leaning Into Sharp Points” Practical Guidance and Nurturing Support for Caregivers.

One of the first things Dean did when I entered his apartment was show me the chair Tennessee Williams sat in when they discussed the state of theater in San Francisco. It was my first visit to Dean as a hospice volunteer for Pathways.

“We were good friends,” he said. “Well, maybe not friends, but colleagues. I’m sure if he was still alive he would be at my good-bye party.” Dean was a well-known actor in San Francisco and dying of liver cancer.

He told me about a huge affair being organized by friends, colleagues, and the many fellow actors he had helped throughout the years. “Why should my friends celebrate my life when I’m not there?” he asked. The planning started when he received a terminal prognosis. Because Dean had been an actor for sixty years, the event had to be choreographed as meticulously as if it were opening night on Broadway. And of course, he expected me to be there.

One week later I entered the lobby of a theater in which he had often performed. After elaborate trays of food and many glasses of champagne had been served, his closest friends went to his side and told him how much he meant to them, and how he had contributed to their lives.

Most were local actors, but a few I recognized from films and television. There was weeping throughout the conversations, but these were expressions of gratitude for having been allowed into the life of this wonderful person. During the time I served him afterward, he often retold the events that occurred at the party, marveling at how fulfilling his life had been and how the party was its culmination.

When he died only a week later, the following was reported in the SFGate.

Mr. Goodman requested that there be no memorial service, but a celebration of his life was held at ACT on June 19. The evening, attended by Mr. Goodman and some 200 guests, included a reading of his newest play, “Bloody August.” At the ceremony, Mr. Goodman received a special lifetime achievement award from Actors’ Equity for 63 years of service to the union and to the theater.

A good-bye party is a glorious event celebrating life, and it gives permission for people important in your loved one’s life to say good-bye, an act that is difficult for many to do. The good-bye party says to those who attend: “I know I’m dying, and I want an opportunity to tell you how much you’ve meant to me. And you have my permission to do the same.” People who have attended such parties rank them with some of the most meaningful and joyous events in their lives.

Often, there is an awkward moment when people hear someone is living cancer—or worse, expects to eventually die from it. Listeners hear “cancer” and they become silent as if struggling to find the right words to say. Those of us who have decided to share our physical condition with you, often hear words that are based on your difficulty dealing with illness and death, rather than on what the diagnosis means to us.

Some well-meaning and sensitive people try to minimize the magnitude of what we are sharing, with words such as, “Oh don’t worry, we’re just around the corner from a cure.” Or statements filled with optimism such as “Let’s hope for the best.” And also the sympathetic “Oh, I feel so sorry for what you’re going through.” The search for the “right” words is futile. There are none.

Revealing one has cancer is not simply an issue of deciding to be honest or closed. The decision is based on a dance between the world of a person who knows he or she has a limited future and their expectation of how the listener will react. It’s as complicated as a jazz improvisation occurring between John Coltrane and Miles Davis.

So, what should you say if there aren’t any “right” words? When I first started playing the shakuhachi (Japanese bamboo flute) I struggled to produce the “right” notes in a song I was learning. My teacher, who not only is a great musician but also a wise philosopher, said, “Stop worrying about the notes. Think how you would play the song to your child when he was a baby.” For him, notes came from one’s soul, not from the flute. The same applies in deciding what to say. The words are secondary to your understanding of how our lives have changed.

Instead of thinking about the words, try to imagine what those of us with cancer are experiencing. Many of us no longer think about death in theoretical terms. It has become something very real to most, frightening to many, and enlightening to some. Instead of having a lifetime to make up for our regrets, we may have a limited amount of time to remedy them. Instead of years to complete goals, we may begin focusing on how we are currently living our lives. How we approach that understanding is rarely straight-forward. It’s as circuitous as Lombard Street is here in San Francisco.

It is from this world that we are sharing with you that we have a life-threatening illness. And your understanding of our world should guide your response. And if you can’t imagine what we are feeling, rely on compassion.

Someone once asked the Vietnamese Monk Thich Nhat Hahn to define “compassion.” He said to think about the person you are talking to as if he or she was your mother; the person who fed and cared for you when you couldn’t do it yourself.

So don’t worry about the right words. When you hear “I have cancer,” visualize that it’s your mother saying the words. And if you still can’t imagine what she would be feeling, then just ask us. We wouldn’t have shared something this personal if we weren’t prepared answer the question, “How do you feel about it?”

“Stan Goldberg brings wisdom and personal experience as a caregiver and hospice volunteer to this compassionate and honest guide to providing care for one who is chronically or terminally ill. Written from the perspective of both the caregiver and the one who is receiving the care, it is a sensitive, rich, and often compelling resource.”

– Andy Miller, MHSE, MCHES, Executive Vice President of Mission, LIVESTRONG, LANCE ARMSTRONG FOUNDATION

Excerpt from Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers.

I would sit for long periods with Jim in his kitchen when Lisa slept. He was a large man who had laid bricks his entire life, until he retired, five years before Lisa received a terminal prognosis of congestive heart failure. Unlike her husband, Lisa was very small, and, in the words of Jim, “the disease shrank her to the size of a tiny bird.”

“Neither of us is into the touchy-feely stuff,” Jim said to me one day. “Lisa and I have been married for almost fifty years. Before we knew she was dying, I don’t remember the last time I told her that I loved her. But she knew it by the things I did. We came home from the doctor’s office that day, the day Dr. Louis said she would be the one to leave first, and we sat at this kitchen table and had coffee. Mind you, there was nothing special about us sitting here. We did that almost every day. It was a kind of ritual.

“We never talked when we drank our coffee. She usually had a book, some woman’s novel I’d never look at, and I had a newspaper folded back to the sports section, which she wouldn’t read even if nothing else was around. We’d sit there every morning, year in, year out, not even looking at each other, just reading and drinking coffee. Well, it usually took us about fifteen minutes to drink a cup. We’d hang around it, you know. Not really drinking it, just being together without fussing.

“We started doing the same thing that day when we returned from the doctor’s office. I was hiding behind the newspaper when Lisa reached her hand over the table and held mine. I put my paper down and she saw my tears.

“Jim,” she said, “I love you. I always have, and I’m sorry I’ll be leaving you.” Well, I started bawling. Can you imagine that? Me, a guy who never cried. My father taught me that men should hold in their feelings. We must have held each other’s hand, not saying anything, for a good five minutes. That was longer than I could ever remember doing. Finally, I told her how much I loved her and what she had meant to me all these years. It was as if one of my brick walls tumbled over and I was able to say things I hadn’t even thought about for years, maybe never.

“From that day on, I’ve told her how important she’s been to me. I know I’ll miss her when she’s gone, but I’ll have the memories of the last six months we had together.”

Lisa died three weeks later with Jim holding her in his arms. Just as he predicted, he was lonely without her, but at the memorial service he spoke about their last months together and how important it was to him that he was able to relive their wonderful life together by recalling his memories. The grief was still palpable but, I believe, less painful than it would have been had they not had those incredibly honest discussions about their intertwined lives. Instead of being hobbled by what wasn’t said and done, he was able to reflect on some of the most honest and meaningful conversations he and his wife ever had.  It’s never too early to start these conversations with a loved one.

“Stan Goldberg brings wisdom and personal experience as a caregiver and hospice volunteer to this compassionate and honest guide to providing care for one who is chronically or terminally ill. Written from the perspective of both the caregiver and the one who is receiving the care, it is a sensitive, rich, and often compelling resource.”

– Andy Miller, MHSE, MCHES, Executive Vice President of Mission, LIVESTRONG, LANCE ARMSTRONG FOUNDATION

Excerpt from Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers.

Caring for anyone who can’t care for himself opens a door to your soul that I don’t think is opened by any other activity. The person who allows you to do so is saying, “I’m totally vulnerable and I’m placing myself in your hands.” After eight years of caregiving, I’m still learning and, I hope, still growing.

You have the same opportunity with your loved one. If you’re open to the experience, you’ll learn about yourself, death, and, most important, life. But to do that you must be willing to lean into the sharp points of caregiving.

Tibetans say that, to get over the things you fear most—the sharp points of your life—bring them closer instead of 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, which has the same degree of success that a new coat of paint on an old car has in stopping the 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 faced with death—probably the sharpest point of all—we hide from it as if it were a tyrannical schoolteacher coming to discipline us. It is always our choice whether to follow the ancient Tibetan advice.

The poet Rainer Maria Rilke thought bringing the sharp points in life closer was an opportunity for healing. He said our greatest fears are like dragons guarding our hearts. Few dragons are as intimidating or as capable of hiding our wisdom from us as long-term caregiving. Pushing away the sharp points of caregiving is like covering them with a permeable membrane, something porous enough that they emerge at unexpected moments.

A smell, word, or sight allows them to resurface. 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: “Yes, I turned my life around sitting on the beach in Kauai being served piña coladas by attentive wait staff.” Just as intense heat and pounding are necessary for creating the highest-quality swords, sharp points are necessary for shaping our lives.

Considering all the things that can go wrong with our minds and bodies, I’m amazed we can last as long as we do. But when things start going wrong, very wrong, caregivers are often thrust into chaotic situations. Daily, they are often forced to make momentous decisions without much guidance. What was needed yesterday may not be sufficient today. Just when they understand how to care for a loved one, the illness takes an unexpected twist and they’re dumbfounded about what to do next.

A loved one was grateful for what was done yesterday, but today it’s just not good enough. And tomorrow? Will things finally stabilize, or will the roller-coaster ride continue? With chronic and terminal illnesses, nothing stays the same for long. Instead of trying to become comfortable with what you are already doing, it’s better to become malleable, ready to move along with the ebb and flow of the situation.

Much has been written about the hows, whats, shoulds, and should nots of caregiving. But to clearly understand caregiving, all the peripherals need to be stripped away, leaving its most basic component, offering compassionate service to someone who can’t do things by him- or herself.

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.

The question asked by millions every day is, “How do I do it?” The question asked by anyone with deep spiritual convictions, is “How do I do it for someone who holds very different beliefs than me?” As a Buddhist caregiver in both hospices and other settings, and whose caregiving population is nearly all non-Buddhist, I’ve often had to ask myself the latter question. And with Buddhists comprising a tiny fraction of the American population, you too may be faced with the same question.

When Needs Conflict With Buddhist 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).

From a safe distance, helpful suggestions based on millennium-old principles seem logical and righteous. I know that as a Buddhist, the application of certain principles and beliefs have made my life more meaningful. From a distance, it’s possible to look at the misery of others and feel the certitude of “if only” statements. But what if the person needing care is your non-Buddhist partner, brother, mother, father, child, or close friend whose idea of “letting go” is trading in a car every two years for a new one. Or “living in the present” means keeping up with current fashion? The objectivity that is possible from a distance dissolves when it’s someone whose hand you can hold. And the universal truth of some concepts, such as letting go and living in the present, becomes equivocal. There is a Spanish proverb that says, “It’s not the same to talk of bulls as to be in the bullring.” The same applies to caring for anyone who has a chronic or terminal illness and has not lived their life as a Buddhist.

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.

Many Buddhist teachings may have limited value when the person you are caring for can only see the world and your advice through their illness. I recently experienced a pain so intense that I asked my wife to call 911. It was something unusual for me, since I have always been reluctant to seek help before trying to control my pain through meditation. But not that time. The intensity made every technique I spent years practicing as useful as a 1970s computer. Fortunately, it was nothing serious. But I learned that given a battle between the immediacy of a problem and a concept, the practicality of a problem always wins out. That was the case with one of my patients who described himself as a “confirmed atheist.”

He noticed the mala 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 cancer, HIV, a chronic heart condition, early stages of dementia, ALS, or any of the hundreds of illnesses that tainted everything they felt or perceived.

If Buddhist 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 Buddhist 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.

Even though you, as a Buddhist, may believe that the stripping away of ego-enhancing activities should bring someone closer to understanding their “original nature,” it may not for someone such as the Fortune 500 executive I cared for with ALS who became dependent on a caregiver for things seemingly as inconsequential as scratching an itch. Or the novelist with dementia known for her intricate plots, who painfully wrote about becoming lost in the supermarket she had frequented for years. Losses of ego-enhancing abilities are rarely thought of in positive terms by non-Buddhists as they face a world that is constantly changing because they are. As the world of the person requiring caregiving changes, guidance for what to do should be based more on their needs than most of the Buddhist values that are the basis of your own life.

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.”

“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 more time with ailing non-Buddhists than Buddhists, 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.

The poet, Rainer Maria Rilke, thought bringing the sharp points in our life closer was an opportunity for healing. He said that our greatest fears are like dragons guarding our heart. There are few dragons as intimidating or as capable of hiding our wisdom from ourselves as long-term caregiving. Pushing away its sharp points is like covering them with a gossamer cloak; something so porous, that they emerge at unexpected moments when a smell, word, or sight allows them to resurface.

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 by attentive wait staff.” 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.

The space occupied by the caregiver and the person served is special. Some would say spiritual. Depending on someone for your continued existence creates a connectiveness that is unmatched in almost any other setting. The person is saying “I can no longer continue living without your help.” The caregiver’s response should be “I’m honored to be given an opportunity to make the last phase of your life peaceful.” And while some of the experiences are enlightening, others will be unpleasant. Coming to caregiving with compassion based on a person’s needs, rather than a doctrinaire position, will allow the dragons to surface, each providing a lesson on life and death.

“Why do you travel ?” my patient asked.

Judging by the tone of his voice, I thought he was looking for more than the usual common answers such as “to experience another culture,” “to relax,” or any of various reasons related to escaping from an ordinary life.

As I’ve grown older I’ve come to realize that the reasons I traveled when I was younger, has little to do with why I travel now. When I was younger, I traveled to learn about the world. Now, I travel to learn about myself. And in many ways, how I learn when I travel has similarities to how I learn as a hospice volunteer.

Many strange thing happens when you’re at the bedside of someone who is dying. One is  mystical connection that often develops. If I tried to describe it, you might say, “What on earth does he mean?” So, instead I’ll use a more practical, useful explanation.

I think we all walk around with holes in our souls and minds that cry out to be filled. We may be trying to determine why our relationships are not fulfilling. How we can move on after being offended by an unskillful person. Why we aren’t happy. Or why other distressing conditions remain despite our best efforts to rid ourselves of them.

What I have continually experienced at the bedside is that the honesty of the person who is dying is so profound, that the lessons they provide me—none of which I ask for—sweep over my consciousness, and where there are holes, the most appropriate ones settle in, and the remainder move on. It’s almost as if I’m on a street in San Francisco with potholes crying out to have a little asphalt thrown into them. The only thing required to fill my holes is to listen and nonjudgmentally observe what I experience.

And that’s what I decided to do in Turkey. Flying over the Atlantic I asked myself what holes I needed to fill. There were many, and instead of choosing one, I decided to do what has always worked in hospice: just observe and allow what was most significant to make on impact on me. I didn’t have long to wait. When we arrived, almost immediately my attention was drawn to aspects of Turkish life that involved “adjustment,” rather than “conflict.”

I saw it in Muslim women’s head scarves signifying fundamental Islamic values, that were made from the finest European silks. In women wearing gray trench coats hiding everything from neck to ankle, as they walked arm-in-arm with other women who could have stepped out of Vogue.

I heard about it from a tour guide who explained that the ban on wearing head scarves in schools and universities was ignored if they were covered by baseball caps.

I felt it as our driver took us through the ancient streets of Istanbul in an elegant Mercedes touring van with all of the latest electronic devices, as my feet rested on an old Turkish rug that softened the European origin of a car made by a past invader.

I heard it in the form of a digitally recorded call for prayer echoing through the narrow streets in Istanbul from 3000 mosques, as a street musician improvised an accompanying jazz rift on his Kabak Kemane, an ancient bowed instrument, and I watched it on the faces of shop owners intent on completing a business transaction, regardless of the Imam’s words.

I saw it on the walls of the 2200-year-old Hagia Sofia where its conversion from a Byzantine church to a mosque was allowed by Sultan Mehmed II, who refused to destroy the frescoes and mosaics depicting the life of Jesus; instead covering the iconic faces with removable paint and plaster.

I experienced it as diners sat down for an evening meal in an outdoor cafe, and watched a group of eight Muslim woman dressed in black, each with one crutch, some with young children, scream at each other—presumably who had to right to ask for baksheesh (money), as annoyed Muslim non-sectarian policemen ordered them to disperse and stop bothering the tourists.

In horror, I witnessed  the inability to adjust as a cruise ship passenger—one of thousands—cuing in line to see the Sultan’s treasures, yelled at people behind him who were six abreast “Not to jump the line,” while ignoring the exquisite carvings in front of him.

I heard it in the sound of the metro trolley hooting it’s horn as an Asian tourist stood in front of it snapping endless photographs while expecting the car to slow down in order for him to take home the perfect shot—and it did.

I saw it watching poor children diving between multi-million-dollar mansions on the Bosphorus with its treacherous tides, trying to cool off during the unseasonably hot September afternoon while old men wearing tattered clothes caught anchovies on multiple hooks for their families evening meal.

I heard it listening to people extolling the quality of Armenian and Kurdish food as if neither culture had a painful history in Turkey.

In Cappadocia I felt it crawling through endless caves dug into the soft rocks by Christians in the first century, preferring life without sunlight to death by Roman soldiers.

I witnessed it in the farmlands surrounding Izmir as Muslim men and women avoided eye contact on the road as my wife reminded me that saying hello to everyone, especially women was not a culturally correct thing to do.

I felt it rising at dawn in a hot air balloon over Göreme and saw the wonders of this country on a vessel guided by wind, something the pilot had no control over.

I tasted it when offered pumpkin seeds in a field whose meat was always left for the animals to eat.

I marveled at the cats who respectfully sat on the pavement by my table and waited for me to offer them food, gracefully moving on when I didn’t.

I felt it in the coldness of the onyx blades used to carve out an underground city that housed 40,000 people, that 1000 years later would be used to make lifeless miniature Sufis for the tourist trade.

And I imagined the thousands of pidgins at the entrance of 3000-year-old caves signaling the approach of Roman Legends, while providing it’s inhabitants with eggs, meat, and guano.

So what did I learn from this 8000-mile journey that crossed 11 time zones? We have choices in life: we can either adjust to the circumstances over which we may have little or no control, or pretend that we do, and as did the few early Christians who didn’t want to live in caves, endure consequences far worse than not seeing the sun.

Possibly I could have learned the same lesson closer to home, say in Daly City or Hayward. But then, it wouldn’t have been an adventure and I wouldn’t have realized the importance of visiting cities where cruise ships don’t dock.

In August, I had scheduled a trip to visit her on September 18th.  Nationwide, the planes were grounded and I didn’t know when the airports would reopen. But I knew I had get to New York. Mostly to give support to my daughter, but having grown up only one-hundred miles from New York City, I felt an affinity not only with the city, but also it’s people and culture. Only a few days before my scheduled departure, the Federal Aviation Administration announced that on September 18^th, the planes would start flying again.

As I waited to board my plane at the Oakland International Airport, I heard, “He’s moving towards the gate!” It was a security guard frantically speaking into her walkie-talkie as she tailed a well-dressed man of middle-eastern decent. Within a few minutes, three policemen appeared and trotted through the terminal trying to catch up with her. It was the beginning of ten days where the events I witnessed and was involved in generated emotions that are still as vivid today as when they originally occurred.

In New York City, it began when I went into the subway at Lexington Avenue to get on The 6 Train to lower Manhattan. Walking down the stairs, I  heard the refrains of Ava Maria played on an accordion as pristine pictures of the missing appeared on graffetied walls. The missing were always smiling, sometimes with friends, but mostly with children. “Have you seen him?” “Have you seen her?” the posters read. Throughout New York City they kept reappearing as did the tears of people who stopped to read or even glanced at them.

When I exited two blocks from were the Twin Towers once stood, I saw empty gray buildings beneath a blue sky, as earth generated clouds drifted up and vanished. The smells of devastation and death combined, easily passing through the clean white mask given to me by a tired policeman.

I saw people push to photograph images that were too horrible to forget of twisted steel skeletons guarding lifeless spaces. Spaces that once held the dreams of people whose families waited for news, but already knew.

From atop one building a Sousa march tune blared from speakers for the benefit of people who were too numb to listen or too grieved to care. And phamleteers unashamedly thrust words of salvation and doom into hands willing to accept anything.

I watched reporters trying to tape the perfect interview, while thousands of cell phones described images that had no words, to people who listened, but I’m sure couldn’t understand. And later that day, at the Metropolitan Museum of Art, the entrance to the  Islamic art exhibit was closed.

In the city’s parks, I saw babies play in a world that was newer than they, while pigeons took crumbs from trembling fingers, and emotionally bruised and battered New Yorkers pulled out damp cloths from Gucci suits and stained overalls.

At the half-priced tickets kiosk in Times Square, a steel drum played patriotic songs as an indescribable smell stopped conversations in mid-word, until it moved on, spreading throughout the boroughs.

That evening, my daughter and I walked past candles glowing in front of a fire station in which flags were readied to wrap comrades. Later, in a mostly empty restaurant, we listened to glasses clink to missing friends, as we and other strangers who heard the toasts sobbed along with those offering them.

For six days I aimlessly wondered through a city that I had known in different times and realized it would never be the same. The memories I took back with me to San Francisco were more surreal than a Dali painting. It’s been ten years, but they still slip through the walls of my consciousness, riding on innocent sounds and visions.

I don’t remember, I say.

But you do remember she says.
We ordered your favorite Indian foods
sang songs of the 60’s
and danced to Eleanor Rigby.

I don’t remember, I say.

But you must remember, she says.
We drank Woodford Reserve
and reminisced about motorcycle days
and drugged pleasured nights.

I don’t remember I say.

But surely you remember, she says.
we spoke of memories
some new and others old
that made you, you.

They all look at me as if
I’m playing a game
designed to torture
worse than Abu Ghraib

And with resignation I say
yes, Yes, YES!, I DO REMEMBER!!
Punctuating each word hoping
the melody hides the truth.

And finally people relax
wanting to believe
I had too much to drink
or was too lazy to think.

But I don’t remember.

I don’t remember the wonders
I’m told defined my life
and changed others
who thanked me for entering theirs.

My friends repeatedly tell me
of events whose weight,
once significant
now have shrunk to pebble-size,

Evaporating into wisps
that slip from my mind
as if they were breaths
escaping through a gossamer web

I’m told I cried
When my children were born
both times,
and I knowingly nod my head

But only remember my tears

I’m told I exchanged whispers with Martin Luther King
as citizens of Montgomery
hid in shadows
holding gray cold objects.

But I only remember the smell of night blooming jasmine.

I’m told I sent students
on livelong journeys
and taught children
who couldn’t speak to speak.

But I see only a few nameless faces.

I’m told I eased
the lives of many
with compassion
as they prepared to die.

But I only remember torn pieces of faded pictures.

All bits of yesterday
the most important
slowly descending without control
as if vacuumed from my mind,

On the way to a doorless place
I don’t know how to enter,
Or if I could, what I’d find,
Or once found what I’d do

And the repetitive painful questions
keep coming from those
desperately hoping
That the me I was is still within.

I see their fear painfully grow
as if it isn’t me they’re seeing
but a stranger they now fear.
So, with a smile I again say,

Or course I remember.

They relax comforted in believing
it was just a fleeting senior moment.
Like ones they have and laugh at
before their own doubts begin.

And I wonder how often
I’ll need to repeat this painful drama.
Smiling and nodding
because they don’t understand that

I can’t remember.

What It’s Not

I’ve spent eight years with people who were in various  stages of Alzheimer’s and other forms of dementia. Although my hospice patients in San Francisco were all in the later stages, I heard painful stories from their families of how people reacted to them when they still could function with some help.

From others who are in the earlier stages, I heard identical stories involving relatives, long-time friends, and close colleagues who drifted away or interacted with them as if they :

-Stepped back into their childhood

-Possessed the mind of a developmentally delayed child.

-Or became psychotic

None of these are true, yet as a society, we treat those with dementia as if at least one of these misconceptions was the gospel.

The Harm We Cause
When we act out of ignorance, we may unintentionally cause immense harm to those who are struggling with the disease. One person with dementia, who held a Ph.D. in chemistry, no longer would order a meal from a fast-food chain because, according to him, “The server made me feel like a moron” when he couldn’t quickly decide what to order from a board menu containing more than 50 items, with a multitude of combinations.

Changing Identities
As memories are lost and the ability to manage those that remain becomes a struggle, the identities of people with dementia change. We all view ourselves—our identity—by the roles we play, the activities we enjoy, the affiliations we have, the values that structure our lives, our abilities, and relationships. Imagine how your life would be transformed if significant parts of your identify disappeared–sometimes quickly, at other times slowly, and maybe the worse, stealthily.

And It’s not only self-perceptions that create identities, but also how others perceive us. Imagine what it must have been like for that chemist who spent 8 years in graduate school and was involved in the development of life-saving drugs to be afraid of ordering a hamburger from someone who possibly never graduated high school.

Pulling the Sharp Points Close
Life is full of choices. We can run away from those with the disease, either out of ignorance or fear of what we might eventually become, or we can choose to put ourselves in the place of someone with dementia. Tibetans have a saying that if you want to get over the fears in your life–the sharp points–bring them closer, rather than running away.

But, eventually, you won’t be able to run away from Alzheimer’s or other forms of dementia. Statistics say that many of you reading this article will develop dementia. If you’re 60, you have a 1% chance of developing some form of dementia and your risk increases every year until you reach 85 when it levels off to 35%. If you have a parent with early onset Alzheimer’s your chances of developing the disease dramatically increase. And if you don’t know someone who is close to you with Alzheimer’s or other forms of dementia, trust me, you will.

How to Help
In many ways, having dementia it’s like being dropped into a strange country with customs and a language you don’t understand. And just as you’re learning how to maneuver your way, something changes and you have to start all over again. And nobody is there to provide you with a GPS for getting out.

So how would you react if was your spouse, your parent or a friend who had dementia? Instead of providing lists of “shouldisms” and going into the specifics of Alzheimer’s and dementia (see the links above), I thought I’d just suggest some things to consider the next time you interact with a person who has or you suspect has dementia.

Be Patient. It may take longer to process information

Memories are not willingly lost. There will be things someone with dementia won’t remember, both recent and distant. Not remembering has nothing to do with not trying.

Accept changes. Dementia is progressive. The person’s abilities today may be different tomorrow.

Offer help to the person. There are few things more frightening then being disorientated, such as being a few blocks away from your house and not knowing how to get home. When you see someone who is obviously confused, don’t be afraid to offer help. The worse that happens is they say “No thank you.” The best that happens is you’ll provide unimaginable comfort to another human being.

Offer Help to the Caregiver. Unless someone has been a long-term caregiver, they have no idea of the effort it takes. Offer to help. Anything will be appreciated. Knowing that people care is a blessing to the person receiving the offer, and as my mother would say a “mitzvah” to the person making the offer.

You live in different worlds. As with any chronic or terminal disease, almost everything is seen through the perceptual filters of the disease, from noises to the frustrated looks of fast food cashiers.

Be Compassionate. Imagine the person with dementia is your parent who you love dearly. How would you want other people to interact with him or her and even more importantly, what would you want them to feel after the interaction?

Leave Them With the Best You Have to Offer
Yes, the person you once knew as gregarious will eventually withdraw inward to the point where you may not be able to connect with them. But that may be years away. Enjoy their presence while you still can and offer them the support and compassion you would want if it was you who were slowly moving on a one-way road to a strange, structureless place.

We don’t know what the person with dementia takes with them to that place we’re not allowed to enter. But doesn’t it make sense to give them memories that are pleasant rather than ones that aren’t?

(to read Of Course You Remember, a poem related to this article, press here.)