Please note that this essay compiles details from many different patient encounters. All identifying characteristics such as names, genders, or backgrounds have been changed to protect the privacy of those individuals.
Death is becoming routine. When I first became an overnight hospice nurse two years ago, death was a wonder and I was honored to be its witness. I remember everything about the night my first patient, a fifty-something year-old man I will call Frank, died. The air on the hospital ward was infused with magic, as if Frank had opened a portal between this world and the next. As I crept in and out of his darkened room titrating his morphine drip in response to his signs of pain, I felt I was a midwife, nursing him gently to his transition. Frank’s mother sat off to the side of the bed facing the door, her lips pressed into a tight line. I never saw her touch her son or talk to him in the whole week before he died. At the beginning of my shift that night, I leaned down to Frank’s ear and whispered, “Your mother is here. She has been here all this time watching over you and staying with you.”
I did see, in Frank’s emaciated form, shadows of my father, wracked with opportunistic infections, as he died of AIDS twenty-six years ago. I had been only twenty-two when my father was on his death bed. The family back in Pennsylvania had called him the Pied Piper because he always had a trail of my cousins behind him as he set off to enjoy the outdoors. He would spend hours swimming with us in the creek behind his brother’s house, lifting the heavy stones with his strong hands and tossing them into the water to form a dam. We kids would try to help as much as we could, struggling against the powerful flow of the water. Then, once we had a decent wall of stones and a deep pool would begin to form, he would tip his head back, shock of wavy brown hair blowing in the breeze, and laugh out loud. The children would crowd around him and, one by one, he would toss us “ass over tea kettle,” as he would say, into the deep water we had created with our own handiwork.
My father was gay in the bad old days of shame and hiding, but ultimately he lived his life out loud, never hesitating to bring a boyfriend home to meet his family. Although the relatives in Pennsylvania were mostly conservative Christians and there was the occasional comment that would cut to the quick, they never faltered in their love or their support of me and my father. I will always be grateful that they continued to put their hands on him with loving touch, even as he became sick with the dread plague.
Having never witnessed death before, I was appalled by its ugliness–the diarrhea, the vomiting, the mental confusion. Dad would sometimes try to lurch out of bed, although he was too weak to get very far, saying over and over that he had to get ready to go to his job as a high school psychologist in Brooklyn. I would grab his bony arm and say, “Dad, no, you don’t work anymore, you are too sick,” and he would tumble back into the bed, a look of defeat and sorrow spreading across his face.
In spite of the horror of it all, as Dad’s death approached, I began to feel the same magic I felt on the night of Frank’s passing. New York seemed alive in a different way, as if the city was shimmering with a spirit that I couldn’t identify. I was living in a dingy place on the Upper West Side—my first apartment as a young adult—and my father was dying in his apartment on the Upper East Side. One morning during our visit, he told me that I had flown across town to stay with him all night. I remembered with a start that I had dreamed of flying over Central Park that night. My cheeks had been flushed with exertion against the cold, crisp November air as I tracked the cars speeding down the sunken roadway through the park.
In the end my father did not go gently into that good night. Neither did Frank. After Frank passed I told his mother that I had been amazed by his strength as he fought to live during the last weeks of his life and then came finally to a quiet acceptance. The tightness in his mother’s face loosened almost completely and she smiled back at me with such gratitude, her eyes shining with tears. Then she walked over to the bed and held her son’s dead hand, stroked his cooling forehead and, laughing, she told me all about Frank and his incredible stubbornness in life.
I wish the magic of those first heady days on the hospice ward would not slip away. I turn away when I see my father’s wasted form in the beds. And worse still is when I am caring for a patient that does not achieve what has been sometimes referred to as a “good death,” one that is marked by acceptance and the loving closure of relationships. Ultimately, my father did not have a good death. Rather, as the end approached, he withdrew into a cold silence. I would sit with him for long, still hours, wishing that he could find the strength to confront the terrible reality with me. I wanted him to tell me how sad he was that he would never get to meet my children and be their Pied Piper. I was bereft, a girl grasping for a love that was left unexpressed.
The last dying patient I took care of was a woman in her sixties. Her family would not accept what was happening—that she had finally drank enough alcohol to kill herself. Despite the unflinching honesty of our doctors, her husband maintained till the end that she would stay sober for the requisite six months and then get a liver transplant. It was obvious that she could not do the hard work of preparing emotionally for death while her family was in such denial. One night, after a last-ditch treatment had failed and her family had gone home to rest, she blurted out to me, “But what will we do now? What’s going to happen to me?” Then, just as quickly as she had cracked the door open to the painful truth, she slammed it shut. “Oh, they’ll think of something, they’ll be able to figure something out,” she said, her voice steely and firm. I didn’t say anything. I was just too tired. I nodded and smiled and left the room. When she slipped into unconsciousness a few days later and then passed, there was no magic.
I can see that lately I have needed to keep a little distance. I don’t want to remember my father and his dying time. I haven’t been able to enter into that space of pain with the family each time. But this leaves me with the feeling that the corpses are piling up. I’m afraid I will be carrying them around with me as I do my regular life. Will there be one slung over my back as I pick my kids up from school, make dinner, snuggle with my dogs on the couch?
After every death, I go through the motions of post-mortem care with the nursing assistant—we always do this work in twos. We pull IV lines and the urinary catheter out of the dead body and wipe it down with the leftovers from the half-used packages of wipes that are scattered around the room. Then we roll the body from side to side to get it into the white plastic body bag. I cringe when the head falls unnaturally down toward the shoulder as we roll the body. It is strange how the body is so utterly slack, the tension of life completely gone.
The other night I was sitting at the darkened nurses’ station in the wee hours of our night shift telling my friend Robin, a nurse with almost thirty years of experience on our little ward, that I was struggling with the dead bodies. She laughed with her characteristic high-pitched squeal and said, “Oh, I don’t know if I’m just a very sick person or what, but I love post-mortem care.”
“Really?” I said, crinkling my eyes up into a wince.
“Oh yeah,” she said. “I just always feel like the spirits are floating around watching me work. It feels so peaceful.”
And she’s right, of course. I know the spirits hang around a little while because I’ve felt it so many times myself. Those spirits are grateful to us for our care, for how we can sometimes bring our entire selves to their dying time.
As I was pondering this heady stuff, I heard a muffled cry from down the hall and I got up and headed into room 411. My patient was a ninety-year-old man with dementia who was dying of prostate cancer. He was calling out again for his daughter Vi. I stepped into his room and took his hands off of his urinary catheter which he had been threatening to pull out all night. I held his hands in mine for a moment hoping they would forget about the catheter. He looked at me and yammered unintelligibly about something which apparently was very funny because he burst out laughing. At first I thought he was laughing at me but as he continued to chuckle and smile at me I realized he wasn’t laughing at me, he was laughing with me. Although I couldn’t understand a word he was saying, I knew in an instant that he was laughing with me about the absurdity of it all—this crazy life. It made me laugh too and we laughed out loud together. Then I asked him to dance. He took my hand and slowly started swaying it back and forth, his eyes shining as the first lights of dawn began to show through the slats of the window shades.
Joanna is a recovering lawyer turned nurse and works at a tiny community hospital on the front lines of caring for the poor and the disadvantaged. Her areas of practice include hospice, detox and oncology. When she realized she could no longer tolerate the cognitive dissonance between her inner life and the practice of law, she began writing as a way to find a path forward. She writes personal essays and has produced a full-length memoir and a medical-legal murder mystery. Select personal essays can be found on her blog at applesblue.com. Follow her on twitter @joannaclymer.
