By Ben Shaberman
When I first walked into Joe’s room, all I could think was, “Why the hell did I sign up for this gig?”
He was one of my first patient encounters as a hospice volunteer, and he was barely clinging to life. I was asked to read to him. He was a large-framed, middle-aged, lightskinned African-American, likely to pass away within the next day or so. Sadly, he had no friends or family visiting him. He just lay motionless and unconscious on the bed, drawing slow, shallow breaths.
This was only my third time on the hospice inpatient unit, and I hadn’t done anything remarkable up to that point—answered the phone, filled water pitchers, and told visiting families about local restaurant options. My patient interaction had been minimal. So, when Rita, the nurse on duty that evening, asked me to sit and read to this guy, I felt apprehensive. I trusted that Rita knew what she was doing, because caring for the patients came so naturally to her; I’d never seen anyone with so much unconditional compassion or ease in the difficult circumstance of impending death. She told me it was important for people not to die alone, but I nonetheless felt completely unprepared and unqualified to be with this man during his final hours.
In the limited hospice volunteer training I received, the main message was to be passive when dealing with the patients. Let them take the lead. Don’t try to do too much. Be a good listener. Respect the patient’s privacy and confidentiality. I was also told that though a patient might be unresponsive, there was a chance they could still hear, so I should be careful about what I said in their presence. But they didn’t tell us how to manage the awkwardness that may come for us when sitting with a dying person. I inquired about becoming a hospice volunteer shortly after turning 30—the first time in my life I thought about my own mortality. But more than anything, I wasn’t finding much meaning in my technology sales career, and needed more of personal, intimate connection to the world. Call it a morbid curiosity, but I also wondered what it was like to be with a person during the last few days of their life. What would they have to say about it all?
Well, Joe couldn’t say much at that point. I sat quietly in his room for a few minutes with a book about Bali on my lap. I selected the title from the hospice’s modest library because it seemed like a safe choice. Who wouldn’t enjoy hearing about this beautiful and exotic destination? There shouldn’t be too much in the way of sex, drugs, or rock and roll to offend him.
First, I decided to read to Joe about Bali’s history—its strong Hindu influence, Dutch colonization, and rich artistic culture. I told him about one Balinese king who had 200 wives and an entourage of 50 dwarves. That makes the Mormons look like real underachievers, I thought to myself, wondering if Joe would appreciate my off-color quip.
Then I came across a passage on reincarnation. Maybe I lost concentration or maybe I was distracted by the book’s large colorful photos, but somehow, I proceeded to read aloud about the ancient practice of excarnation, or “defleshing,” in which mourners in Bali would carry the body of the deceased to the top of a mountain to be devoured by vultures. Talk about an uncomfortable moment. Kind of took the charm away from reincarnation. Had I just committed the ultimate hospice faux pas? I felt like Alfred Hitchcock—not a caring hospice volunteer.
While Joe didn’t flinch, I felt completely embarrassed and bolted out of the room. Certainly, the volunteer on the next shift could improve upon the mess I’d made. Rita laughed as I explained what had happened. “He’s just fine,” she chuckled. “Thank you for reading to him.”
A couple of hours later, as I readied myself to leave for the evening at the end of my shift, still upset by my gaffe, Rita came out of Joe’s room with a big smile on her face and said, “Joe’s gone to Bali, Ben.”
In the coming weeks, I stayed pretty busy during my shifts on the inpatient unit, namely because the certified nursing assistants—we called them certifiable nursing assistants— were more than glad to let us eager volunteers take the lead on the mundane tasks. But I never knew what I’d be asked to do during those three-hour evening shifts. Sometimes I’d type up a death certificate. Every once in a while, I’d run out to the Cheesecake Factory to get a decadent dessert for a patient who had a craving for something sweet. Many folks wanted me to read from the New Testament, which became an odd sort of amusement for me, being a secular Jew. I felt like a religious cross-dresser. The Book of Genesis was always my favorite: “In the beginning, God created the heaven and the earth, blah, blah blah, blah blah.” It had kind of sci-fi quality to it. After reading this passage enough times, I began to wonder what Satan was doing during the creation. Maybe he was thinking, “OK, dude, if you are going to create this fantasy land, I need to come up with a place for all my homeys.” While I was happy to comfort patients by reading passages about Jesus and his pals, I could never reconcile how such a popular and beloved book left the members of my own tribe, and much of the rest of the world, in the dust.
During nice weather, I often wheeled patients out into the hospice’s courtyard to enjoy the lush and fragrant flowers and foliage. In the company of someone who is dying, I couldn’t help but have a heightened awareness of everything around me. And in that courtyard, listening to a bird singing or the trees’ leaves rustling in the breeze was a remarkable sensory experiences. There, I developed a greater sense of the motion and weight of the air, and the falling light of an early evening. The courtyard was also a haven for patients who smoked, and while their habit carried with it a sad irony, I could see by their satisfied expressions that each puff was a soothing tonic, and I was glad to help them indulge.
Perhaps the strangest request I ever had at the hospice inpatient unit was from an elderly, bed-ridden man with dementia from cancer that had metastasized to his brain. Through his hand motions, I figured out that he wanted me to pull the large mirror off the wall in his room so he could look at himself. As strange as his request was, it was simple enough. So, Mary, one of the nursing assistants, and I managed to remove the mirror from the wall and hold it in front of him. He was transfixed by the image of himself and began disrobing and speaking in what seemed like tongues. “Hiz meeka blig her mah doo zah! Zah! Zah!
Zoh!” Mary and I were simultaneously amused and horrified, but we had both seen plenty of chatty, naked old men on the unit, so it didn’t really bother us, and we continued to hold the mirror as he shed his gown.
His excitement was remarkable. We had no idea what seeing himself in the mirror meant to him. Maybe he was just loopy from the cancer that had spread through his body and the opiates he was given to control his pain. Or maybe he just wanted to see himself one last time before he died. Regardless, I was glad to be there to help oblige his request. That was the reward of being a volunteer.
While being on the hospice inpatient unit was all about being with people who were dying, only once was I with someone while they passed away. I had just started my shift on a hot, sticky summer day, when Rita said to me, “The woman in room one, Bella, will probably die very soon, and her family left this morning and is not returning our calls. I want you to sit with her. Hold her hand. Wipe her forehead. Make sure she’s comfortable.” When Rita made these requests, there was no doubting they were the right thing to do. And as intimidating as these situations could be, I had learned by then that it usually made sense not to ask any questions.
An African-American in her late 50s, Bella had breast cancer that had spread extensively. She was unresponsive and barely breathing. Though pale, her skin had a rather healthy sheen; it was moist and unblemished. As someone who had inflamed skin from rather nasty eczema, I was always amazed at how clear the skin of hospice patients could be, especially the skin of patients of color. They could actually look quite healthy.
I opened the windows and curtains to Bella’s room to let fresh air in and closed the door to block the irritating din of Oprah on the television in the next room. I sat next to the head of the bed and held her hand. How strange it felt to be with someone at such an intimate moment in their lives with never having exchanged a single word with them. I knew absolutely nothing about Bella and wondered about her life. Had she lived happily? Did she have a husband and children? Did she enjoy a good joke? How difficult had her battle with cancer been? How would she feel knowing that some young white guy was the last person in her life?
After about an hour, Bella’s breathing slowed down and became more and more irregular. As still as she had been, she became even more still. A few minutes later, her breathing stopped and she quietly slipped away, just like that.
The experience filled me with an overpowering sense of peace. I practiced meditation on occasion later in my life, but never felt the clarity and calm I felt the moments after she passed.
Five women from Bella’s family arrived about an hour later at the end of my shift, bawling hysterically as Rita tried to console them. I wanted to tell them that I was with Bella when she died, that she was comfortable and at peace. I wanted them to know that Bella would be ok. But I knew there was a good chance that wouldn’t have gone over well. Instead, I just slipped out the back door into the warm night, overwhelmed by the loud, rhythmic thrum of late summer’s crickets.