Attending the death of a loved one is a painful, sometimes disturbing experience. Frequently it has a deeply mysterious quality, somewhat similar to being present at the birth of a child.
As a hospice nurse, at times, when I am in the presence of death, I feel a primitive, visceral desire for a comforting ritual such as the Catholic last rites or the Tibetan Book of the Dead. The mystery of death is sometimes glimpsed obliquely, almost out of the corner of the eye. The Spirit is present (but not always in plain sight), helping us to learn about compassion and acceptance.
"How do you do it on a daily basis?" friends sometimes ask about my work. "How do you avoid burnout?" For me it is a spiritual discipline. It is to walk a middle path between overidentification with the patient, and, on the other hand, too much distance. I risk overidentifying with the family members, caught up in the pain and frustration of not being able to stop the slide towards death. My personal distress would reduce my ability to suggest specific nursing interventions to relieve pain, nausea, agitation, shortness of breath, and so forth.
On the other hand I risk becoming the distant clinician, unmoved by the suffering in the room. In this mode, I would not be available at a heart and human level to the family. What good would I be to the family if all I had to offer could be found in my handy Nurses Drug Handbook?
But I have the easy part. My question for the families who care for a dying loved one, day in and day out, is the same question, "How do they do it?" They are the heroes and heroines. They’ve taught me that caring for the dying is a spiritual discipline. Mother Teresa spoke of seeing the face of Jesus when she reached out to wipe the dust from a dying child’s face. Similarly, I feel that the act of giving this care opens me to an awareness of the Divine Presence.
I would like to share with you a few stories that I believe illustrate some of the spiritual disciplines of caring for the dying. I’ve changed the names in each story, for the purpose of privacy, except for the last one about the memorial bench.
Just Being Here
"Here’s the thing." John said to me one day after we had changed the dressing on a bedsore for his dying wife. "I’m a plumber, you know. I fix things that are broken. But here, with Elizabeth, the way she is, most of the time I don’t do anything at all."
"Could that be it in a nutshell, John?" I asked. "Just being here?" John leaned back in his chair. He peeled off the rubber gloves, tossed them in the trash basket, and for several minutes we sat in silence. We noticed that Elizabeth’s face started to soften and her breathing became a little less labored. He glanced at me and said, "This is hard work, just being here."
Each Day is a Gift
"It’s a good day," Helen said with a wry smile as we sat around a table in her patio, "when you wake up and you’re still alive. Sure, I’ve got pain, but I’ll take it in trade to be able to see that fat old robin looking for a worm out here in the yard."
"There’s a verse in the Bible that goes something like this," I said. "’This is the day the Lord has made. Let us rejoice in it.’"
Helen turned and looked me in the eye. "I’ve lost my appetite, Brad, and I’m getting pain in some new places. How much time do I have?" I saw in her face that she knew the answer to her question. "Each day is a gift," she said, just above a whisper. I reached out and she took my hand, holding tight. "Yes, each day," she repeated. "It’s a gift."
An Unseen Presence
"Did you know God has a sense of humor?" Rachel asked me one day after her husband, David, had died.
"We talked, David and I," she continued, "about what happens after you die. David said he’d try to let me know he was OK. One day, about a month after he died, his sister came to the house. Now, she was someone David didn’t get along with very well. It was a clear, sunny day, except for a small cloud passing over the house. Suddenly, as his sister was standing on the porch, a downfall drenched her. It didn’t touch me."
I asked, "What do you make of it?" We looked at each other and both cracked up laughing.
Rachel said, "I guess there’s a lot going on we don’t need to know about."
"I told Dad this morning it was OK for him to go now," Bill said to me as I stepped in the door. As we sat in his living room, I noticed a new softness in his face. He’d been asking his dad to eat, to get out of bed and move around, fighting to keep him alive. "You know," he said, "I’ve been mad at that old bastard all these years. This morning it all melted away. I told him I loved him and kissed his cheek."
"Forgiveness," I said, "It’s a curious thing, isn’t it?"
"Yes, it finally came to me last night," he said. "It’s not about being right or wrong. Or even about justice. I carried a load of stuff he’d done that I hadn’t forgiven. Then last night it was like standing on a bridge and taking that load of anger and resentment off my shoulder, dropping it in the river, and watching it float away. I saw it sink under the water and it was gone."
"I’m a teacher," Dennis Fox told me one day, shortly before he died. "I want to leave something behind—something of myself." Then he told me that he had just visited "his bench," a place for joggers to sit and rest for a moment. Later, while biking on Kelly Drive, I found his bench, just under the Strawberry Mansion Bridge, up a bit from the boat house. I read the placard:
In celebration of the
61 years of the life of
Runner, Bicyclist, Teacher
Rest here and enjoy your endorphins.
I sat down on Dennis’s bench. A elderly man came walking along, a slight limp favoring his left leg, his white hair peeking out under an old Phillies cap. We made eye contact and smiled. He sat down beside me on the bench.
I said, "See this plaque? My friend Dennis and I were the same age. We both had sons the same age."
"You were friends a long time?" he asked.
"Funny thing was," I answered, "I only knew him a few months, before he died. I was his visiting nurse. But it seemed we were brothers. No, it was more that that. I saw myself in him." I looked up as two joggers came running past our bench.
"Part of Dennis lives on in me." I said, just above a whisper. "I just don’t know."
We sat for a while, that old man and I, neither of us saying anything. Then he got up and shook my hand. "Son," he said, "we don’t have to understand everything."