Let’s start with Ray. Ray lived alone, had advanced prostate cancer and 24-hour caregivers. Television was an unheeded background presence—unless a golf tournament was airing. When I first visited Ray, our conversations could be halting and sporadic but rapport came surprisingly fast. I think it was because I was the only guy in his life at this point. We eventually discovered a common love of jazz and good “drinking” songs.
Pain and its treatment is a major factor in the Hospice equation. Seeing a person in chronic pain, even when controlled by drugs, can make anyone feel powerless. Each situation is different, of course, but Ray showed me what the word “grit” really means.
Ray’s mobility did not exceed a labored shuffle, so I was surprised when he agreed to my suggestion that we take a ride downtown. It took some maneuvering to wedge him into my little Ford Escort, but the trip was an unqualified success. I marveled at the therapeutic effect of a simple break in daily routine.
On the drive back, our conversation had drifted to beer and oysters—specifically to “red” beer (with tomato juice in it) and oysters on the half shell. I told him of a friend who thought a day without Clamato juice and Rainier Ale was deficient at best. Then, thinking about the oysters my wife and I raise on our beach, I suddenly announced: “Ray, next week is party time at your house.” His reaction was hard to read because discomfort dominated his words and body language. The slight nod was all I really needed.
The next week I brought beer and some freshly shucked oysters. Ray’s refrigerator yielded an ample supply of tomato juice, and I produced a Dave Brubeck CD that included a swinging version of the beer-drinking classic “In a Shanty in Old Shanty Town.” In spite of Ray’s obvious discomfort, he insisted his caregiver prepare the red beer and oysters for us. All he could manage was half a small glass of beer and a single oyster, but there was clear victory over pain in those few moments.
As I cued up Dave Brubeck, Ray was bent over in his chair, a common posture. Quietly I asked him if he knew what song was playing. He lifted his head, looked at me with eyes reflecting a special kind of triumph before hoarsely whispering, “Shanty.”
It wasn’t too long after our party that Ray slipped into a coma. I was able to see him, but words were pointless. We had had that privilege earlier.
Walter was 92. The chart said, “End stage . . .” something or other. He was my first patient as a hospice volunteer. I didn’t know much else about him except that he liked Western novels. On my initial visit I found out he was originally from Nebraska. I’m not sure how Notre Dame worked its way into the conversation, but he told me about the time Knute Rockne brought his team to play Nebraska. Walter was just a youngster at the time, but it made quite an impression. When we had finished talking and had established a time for a weekly visit, I left on a kind of euphoric cloud. My first patient, a football fan and Rockne admirer. What a start.
The following week I bounced into the living room where Walter was ensconced in his well-padded recliner and said, “Hi, Walt. I’m Bob, remember?” He squinted at me with a furrowed brow for an interminable time before bluntly replying, “No!”
Deflating experiences can be instructive. I soon realized hospice is about the patient, not me. I also learned that repeating a good story brings joy to the storyteller regardless of the number of times it is told, that sometimes nothing more is needed than a simple, silent presence, and that reading a Louis L’Amour novel aloud could put me to sleep almost as quickly as it did Walter.
Walter survived for almost a year, managing his decline with a grace that was enviable. I remember his asking his nurse Maggie about her life outside of Hospice. Maggie, who was taller than 6 feet but very thin, told Walter about living with a man who did all the cooking for her and how happy she was with the arrangement. Walter looked her up and down and replied, “Well, he must not be a very good cook.” Endowing humans with a sense of humor, I’ve come to understand, is yet another proof of the existence of God.
In 1994, my wife, Jan, and I were in Japan, spending a “transitional” year after my retirement from Charles Wright Academy in Tacoma, Washington. I was teaching English at a private, all-girls school in Nishinomiya. All was going smoothly until I was hit by a virus or bacteria (the cause was never determined) that transformed me in a matter of days into someone barely clinging to life. I was in the intensive care unit of Hyogo Idai Hospital for 19 days. My three children came from the States to say goodbye.
During one vivid moment, I felt I was leaving life here and entering a place of profound peace. I was aware that knew I had to let go of everyone who was dear to me in this world, and I completely accepted that their lives would continue just fine without me, on paths only they could choose. This letting-go did not involve a rational choice; it was simply there.
Later, I’m not sure how long, with Jan at my bedside, a spark of life ignited that let me—and Jan—know I wasn’t leaving just yet. Through tears of joy I told Jan of this most meaningful moment of my life. Six weeks later, I was released from the hospital.
That experience affected me in many ways. Now I totally accept an existence beyond this life. That may not seem like a big leap for a “cradle Catholic,” but my awareness of such a life was surely sharpened. I also remember thinking that whatever “it” was came as a universal gift to humanity and was not related to religious affiliation, although I believe I’m a better Catholic now than before.
My fear of death evaporated. I had even feared retirement but now embrace my life as a retiree. This doesn’t mean life no longer harbors negatives, but I feel blessed to have realized this perspective on life and its final passing at this point in my life.
Of course, the question burrowed in: “What are you going to do with this profound insight?” A return to good health, reasonable financial security and a jewel of a home on Puget Sound reduced the urge to act for awhile. However, I eventually realized golf was only a partial source of satisfaction. Teaching English to immigrants and assisting in their quest for U.S. citizenship got me on the right track. Then a conversation with the wife of a Notre Dame alumnus active in something called hospice offered answers to some of the concerns I’d had.
Jan and I signed up for the hospice training program and were welcomed as part of the hospice team, whose mission is to help people die with as much dignity and as little pain as possible. Patients qualify if their physician certifies they have six months or less to live and do not wish to have life-extending medical treatment. Funded by Medicare, the program involves administrative staff, a nurse and social worker, a bath-aid person, spiritual adviser and volunteers to relieve caregivers and provide company. But this explanation does little to convey the true power and poignancy that occurs.
A person’s home is the obvious first choice for a hospice patient. Those final days, weeks or months are truly a sacred time for the family as well. But some people do not have that choice, so nursing homes often play a vital role. This was true for David, who suffered from an inoperable brain tumor.
My weekly visits with David were, surprisingly, marked by humor in spite of his short attention span and the clean but Spartan amenities of his world. His lady friend, Wendy, was always there when I arrived, and she was very much a part of our conversations. I soon learned she had been diagnosed with multiple personalities and that David had been her caregiver for some time. The role reversal worked naturally and beautifully.
As David’s condition deteriorated over a few short weeks, my visits included music as much as conversation. He never lost his positive demeanor. My boom box and quiet jazz CDs spawned a soothing communion and welcome break from the nursing home routine.
The last time I saw David, he was lying on a futon mattress on the floor. He seemed to be in a coma, and the nurse told me the end was probably close. I had brought a CD by Joe Pass, the great jazz guitarist paying tribute to the legendary Charlie Parker. I got down on the floor to be closer and felt like a radio DJ introducing the song “Just Friends.” I told him the song symbolized the beauty of his relationship with Wendy, but there was no sign he could hear my softly spoken musings.
I pressed the play button and the magic began. A nurse walking by peeked in and gave me a thumbs up. About halfway through the song David turned his head slightly in my direction. With eyes still closed but with a hint of a smile, he whispered, “That’s nice.” Those were his last words. David died that evening.
It was only my third visit. I called Jeannette before leaving home to confirm my appointment. She said Ladd was much worse, but she wanted me to come so she could take a break and work on their income taxes.
When I arrived, Ladd’s breathing was raspy and labored through his oxygen mask that Jeanette was augmenting with a morphine mist. When she told him I was there, he opened his eyes and extended his hand in greeting. No words; none needed.
Their daughter Linda came for a visit, spent some time with her dad, then went outside with Jeanette for lunch on the porch. Jeanette later told me that lunch with her daughter—grilled cheese, celery sticks and a glass of white wine—was “like being on vacation, talking with my daughter, checking out the flowers in the sunshine, and enjoying a glass of wine.”
While they were outside, I was alone with Ladd, occasionally adjusting his oxygen mask. I also gave Ladd the plastic urinal in response to his only spoken word to me that day—"Pee." When Linda and Jeanette came back in, his breathing continued its taxing toll. Jeanette said she was going to lie down for a short nap till Linda had to leave.
As Linda and I stood on opposite sides of the hospice bed set up in the living room, she told me of her dad’s smoking habit and his beating throat cancer back in the 1970s. As we stood by his side, I gently massaged his leg, seeking some sort of connection. In a little while Ladd tried to remove the oxygen mask that seemed more irritant than relief, so we helped him do it. It wasn’t long before his breathing quieted down but with longer intervals between breaths. At the same time a sense of calm and peace permeated the room. Soon, there was no interval. Linda softly said, “I better go tell Mom.”
I have been pleasantly surprised in my hospice contacts with the lack of fear of death or concern about mortality on the part of my patients. Perhaps by the time hospice gets involved the patient has gone through those natural stages of death so eloquently described by Elisabeth Kubler-Ross. I have come to believe that this final peace is God’s gift to humanity and one I personally “previewed” in Japan.
My experiences are but a drop in the ocean. At the core of Hospice, beneath the acceptance of the body in decline, the sadness, even the humor, lies the profound respect for human life. Our roles as volunteers create unique and potent relationships. I regard this as a pure form of prayer. Death, I now see, can be faced with the same grace that we embrace life.
Bob Mortensen, a retired English teacher living in Olympia, Washington, has been a hospice volunteer for six years.