My father’s bronchitis had worsened. My mother had not called a doctor. In the daytime, he slept. At night he thrashed around in their old master bedroom, sometimes getting up and falling, as my mother, drained of sleep, listened via the baby monitor from the guest bedroom and came in to get him back into bed. His breathing grew worse, his mind more agitated. The palliative-care nurse came one morning and put her ear on his gurgling chest. He had pneumonia, she said. He was finally dying decisively enough to qualify for hospice. Thanks to our involvement with her program, he would not meet his death in intensive care after a panicked stop in an emergency room. The nurse called the hospital and made the arrangements, and my mother called an ambulance. He was taken to the hospital’s inpatient hospice unit, fighting as if for his life, kicking and biting and telling the orderlies to “bugger off.” My father’s caregiver Toni visited. She asked him if he knew who she was, and he opened one eye and fixed her with a baleful and knowing look. He ate a full dinner and then was shot full of morphine.
By the time I got there, he was lying silently in bed, unreachable, his lungs slowly filling with fluid, his eyes shut, breathing as hard and regularly as a machine.
The hospice unit was homey and peaceful. Pamphlets told us that my father’s hearing would be the last sense to go. They suggested we read aloud to him, play his favorite music, and say whatever in our hearts was left unsaid. At the end of the hall was a carpeted living room with a phone and a comfortable couch and videotapes for the families. There was a nondenominational chapel about twice the size of a walk-in closet, a kitchen, a coffee machine, and a refrigerator full of sheet cake.
My mother knelt by his bed, holding his hand and stroking his hair, weeping and begging for forgiveness for her impatience. The beginnings of a tear oozed out from under my father’s eyelid, and a nurse said to my mother, “Stop. You’re making him cry.” I was again ambushed by their love and my continuing failure to understand it.
My mother sat by him in agony. She beseeched the doctors and nurses to increase his morphine dose and end his suffering. She kept asking about turning off the pacemaker. By the time the hospice unit called Dr. Rogan’s cardiology practice it was a Saturday, and the doctor on call refused to authorize deactivation. Apparently no message was given to Dr. Rogan, who later told me that he’d have turned it off if he’d known. A month after my father’s death, a joint committee of the American Heart Association, the Heart Rhythm Society, and the American College of Cardiology would issue a “consensus statement” declaring that it was morally and legally acceptable to deactivate a pacemaker if the patient wished, and that it was neither assisted suicide nor euthanasia. That would come, of course, too late for us.
And so followed five days of hard labor.
Love can look heartless. We did not give my father oxygen or food or an IV of saline or a cup of water. If we had, we would have only slowed the shutting down of his organs and the drawn-out process of his death. A nurse told us that dying from not eating or drinking is not painful, and I myself had fasted for days without distress, but I could not forget the Gospel of Matthew, in which Jesus says, “For I was hungry, and you gave me meat; I was thirsty, and you gave me drink.” Never before in history have so many sons, daughters, and spouses been forced to treat those they love like this at the end.
We would not treat a dog this way.
When death takes just a few days, it is easy, or at least possible, to hold the dying person in the center of your attention. When you have already attended a slowly dying person for years, it’s harder. I could barely bear to be there and listen to his labored breathing and my mother’s weeping. I left my mother with him and went to Pelton’s drugstore on Main Street and bought a copy of Elle magazine. I came back to the hospital and waited for my brothers to come and for my father to die. I went shopping for shoes at Marshalls, once with my mother and once alone. I came back in my new shoes and sat by his bed and read Elle and held his hand. I was fifty-nine and had never before sat at a deathbed. Once upon a time we knew how to die. We knew how to sit at a deathbed. We knew how to die and how to sit because we saw people we loved die all through infancy, childhood, youth, middle age, and old age: deaths we could not make painless, deaths no machine could postpone. The deaths of our ancestors were not pretty. Some died roaring in pain. But through the centuries we tutored ourselves in the art of dying by handing down stories about how those we loved met their deaths.
A Victorian essayist writes that, when Saint Francis was in his forties in 1226, having suffered years of illness and sensing his death was near, he “caused himself to be stripped of all his clothing, and to be laid upon the ground, that he might die in the arms of the Lady Poverty.” Death did not come as quickly as he expected. He was taken back into the house where he’d lain and lifted back to his bed. He asked his monks to sing him his own “Canticle of the Sun.” “Praised be my Lord for our sister the moon, and for the stars, which He has set clear and lovely in heaven,” the monks sang, and they added new lines that Saint Francis had recently written: “Praised be my Lord for our sister the death of the body, from whom no man escapeth.” The next day, “when his pains were some little abated,” Saint Francis put his hand on the head of each of his monks and gave his blessing “unto all the Order present, absent, and to come, even unto the world’s end.
“Then as the sun was setting, there was a great silence,” goes this version of Saint Francis’s death story, as recounted by the essayist:
As the brethren were gazing on his face, desiring to see some sign that he was still with them, behold a great multitude of birds came about the house wherein he lay, and flying a little way off did make a circle round the roof, and by their sweet singing did seem to be praising the Lord with him.
Such holy deaths were not reserved for saints. In the fifteenth century, when Europe was so decimated by the Black Death that there weren’t enough Catholic priests around to give last rites, our ancestors created road maps for the deathbed. The earliest Latin versions, written by priests, were called, simply, Ars moriendi, or The Art of Dying. The English versions, revised over time to fit Protestant theology, included The Boke of the Crafte of Dyinge, The Art and Craft to Know Well to Die, and Rules and Exercises of Holy Dying.
The Ars moriendi did not sugarcoat the death agony, and they described scenes foreign to us now. Relatives and friends gathered at the bedside at home and followed the script of the Ars moriendi, asking the right questions and saying the prescribed prayers, giving the dying person reassurance and hope. The hallmark of a good death was not an absence of suffering but the ability to meet it with faith, courage, and acceptance. Stoicism was not required: in 1651 the Anglican theologian Jeremy Taylor wrote in his Rules and Exercises of Holy Dying that it was OK to groan on the deathbed.
The Ars moriendi did not pretend that dying was the pinnacle of a lifetime of meaningful growth experiences. Their authors lamented, even in 1491, that “men seek sooner and busier after medicine for the body than for the soul.” They portrayed the deathbed not as a lowly place of helplessness and meaningless suffering but as a mighty, transcendent battleground where angels and demons struggled for control of the soul. The dying person, not the doctor, was the star of the show. Her anguish was framed as a series of temptations to sin: wavering faith, despair, impatience, regret for past misdeeds, reluctance to say goodbye, and especially fear of death and hell. Dying was not merely a physical agony; it was also a spiritual ordeal. Its suffering had meaning. The brave person did not battle Death but regarded dying as a test of one’s trust in God, an earthly purification to be followed by a heavenly reward, a sacred rite of passage as profound and familial as a christening or a wedding. The Good Death was marked by last words, treasured by the survivors, expressing repentance, acceptance of God’s will, and confidence in His mercy.
My father did not die that way. He did not say three times, as The Boke of the Crafte of Dyinge recommended, “Into thine hands, Lord, I commit my soul.” I did not ask him, as I would later learn that the Ars moriendi recommended, if he asked for God’s forgiveness, if he forgave those who’d harmed him, if he forsook all the goods of the world, and if he thanked God for Christ’s sacrifice. I held his hand and said almost nothing.
All I could see were his closed eyes and his labored breathing.
Dr. Elisabeth Kübler-Ross, in her 1969 bestseller On Death and Dying, theorized that dying people move through stages of denial, anger, bargaining, depression, and acceptance, though not necessarily in that order. If anything, my father had moved backward over time, from acceptance to depression and anger.
He was doing the long, hard work of his dying in a small, windowless interior room within his own body, his once-booming and argumentative voice stopped by dementia and deafness, stroke and brain damage, pneumonia and morphine. If he cried out inside that small interior room, if he yearned for reconciliation with his estranged son, Michael, if he desired Jonathan’s forgiveness for having been a neglectful father, if he forgave my mother, if he saw white light or his dead brother Guy welcoming him to paradise, I will never know.
The well-known hospice and palliative-care doctor Ira Byock counsels the dying and those they love to say to each other some version of these words: I love you. Thank you. Please forgive me. I forgive you. Goodbye. My father and I said none of those things.
My father just breathed, a terrible, loud, ever-louder breathing, like someone working very hard at something, like someone building a wall, like someone delivering a baby. As he breathed day and night, as his lungs filled with fluid, he was washed and changed and kept clean by kind paid strangers, and my mother cried and pleaded for forgiveness, and I came and went and held his hand. There was nothing left for us to do. In wordless ways, over seven years, I had already said, I love you. Thank you. Please forgive me. I forgive you. I comforted myself with the memory of waking him on the last morning of my last trip home, when I’d said, “Goodbye. Go back to sleep. I love you.”
As my mother and I made our passages to and fro through the quiet streets of Middletown, Connecticut, we looked like anyone else there, shopping for a roasted chicken or opening a car window or just walking dully along. In the evenings at my parents’ home, we found messages from some of my father’s old colleagues on the answering machine — the outward and visible sign of a community that still loved him and had wanted to connect throughout his long illness but often had not known how. My mother, in her agony and shame, or in her émigré self-reliance, or in her reflexive drawing-in to her core, discouraged them from coming to the hospital. He was unconscious, she said. What was the point?
No all-night lighted square of window signaled to our neighbors, who could not see my parents’ carefully sited house from the street in any case, that our ancient vigil was underway. My two brothers were still on the West Coast, throwing clothes into their suitcases and shopping for funeral clothes. I dreaded their arrival. My partner, Brian, pleaded with me to let him fly in and support me, but I still had not learned how to say, “I need you,” and I said no.
My father was a guest in a hotel for the dying. The hospice nurses, practiced at filling the spiritual vacuums of contemporary life, would minister to us unobtrusively, the way priests and family members once did. I was grateful. One calm nurse explained to me that nobody could say exactly when my father’s death would come, but that it would come: thus she gently disabused me of my fantasy that maybe my father would get better somehow and come home. To the hospice nurse, death was not an emergency. It was part of the plan. She told me that as the time got closer, my father’s feet and hands would turn blue, and her map of the coming of death calmed me.
She told me that, thanks to the morphine, my father wasn’t suffering, but I didn’t believe her. I knew that if we gave the word he’d be gurneyed immediately to intensive care, where he’d be shot full of antibiotics and hooked up to intravenous lines and perhaps a respirator, and perhaps survive to die another day. I wanted my father to die as quickly as possible. I wanted him not to die until my brothers got there. I felt as if we were killing him. I did not want him to die at all.
I had prayed for his death, awaited his death, and expected his death. And now that it was nearly here, I was surprised it had come.
My ancestors often did not know what they were dying of, but knew when they were dying. Sometimes they saw their deaths coming and comforted those they loved ahead of time. When hope was pointless, they fell back on the ancient technology of acceptance. “I do want you not to fret about me,” my Quaker great-grandfather James wrote in 1876 to his mother, Mary Watts Butler, from the farm where he was staying in the English countryside, stricken by the tuberculosis that a generation earlier had deformed his father’s backbone and killed his grandfather and his aunt. James was only in his early twenties when he wrote, “We all know even if we don’t often think about it that we all must pass away & that our happy family circle must inevitably gradually dissolve.” His younger sister Mary had died suddenly of typhoid, at the age of thirteen, in a Quaker boarding school, and her death, he wrote, “spoke forcibly to all of us. It told us of the uncertainty of life & of the necessity of preparing for death. I trust that I may join my dear sister, & that as we all one by one quit this earth we may one by one re-form the family circle in Heaven.” James’s doctors could do nothing for his health beyond suggesting that he move to a sunny climate. Soon after he wrote his mother the letter, he sailed for South Africa, settled in the desert, and to everyone’s surprise recovered enough to start the Midland News and Karoo Farmer, marry a farm girl named Lettie Collett, and sire seven healthy sons and daughters, all of whom lived long lives.
At my father’s bedside, I drew no comfort from the notion that our family circle would ever be reconstituted in heaven and even less from the notion, held by some of my fellow Buddhists, that my father would be reborn in another form. I believed that rebirth and heaven were myths, comforting stories for children afraid of the dark. I believed that my father existed only as long as the material conditions supporting his life existed, and that when those conditions disappeared, he would disappear, too, leaving behind only memory traces in our minds, like a trail of bubbles in a cloud chamber. The molecules of his body would become part of cells in other bodies: plants, lizards, Vinca minor, figs. His love for me would live on inside me, just as my brother Jonathan’s sense of abandonment would live on inside him. That was the limit of my belief in eternal life.
All I could see were his closed eyes; all I could hear was his labored breathing.
The pacemaker kept delivering its tiny pulses.
His breathing grew ragged and his feet, as the nurse had warned me, slowly started to turn blue. Sometimes yellow phlegm dribbled out of his mouth onto the cloth the nurses had placed by his pillow. In the presence of his extreme helplessness and suffering, I sometimes felt horror and disgust. But I had no prayers to say.
I left my mother and went alone to the Wesleyan library, where I looked up citations and drafted a letter to the hospital’s bioethics committee, pleading to get the pacemaker deactivated. At four in the afternoon, I abandoned my draft, shut down the computer, and surrendered. I would accept the things I could not change. I could not shorten my father’s suffering or hasten his death. I would stop being a warrior and a medical guardian and simply be a grieving daughter.
I drove back to the hospital. My mother was gone. I held my father’s warm hand and felt his strong pulse, his energy still flowing. He was still my father and I was still his daughter. I held his hand for hours, letting him give his love to me one last time.
In a study of Zen funeral rituals in Japan, William Bodiford, an anthropologist, states that “one of the purposes of religion is to guide the living through the experience of death.” My mother and I craved the sacred, but we did not know how to bring it to my father’s deathbed. We’d attended Buddhist retreats and read Pema Chödrön and meditated alone, but neither one of us had embedded ourselves in a local Buddhist sangha, or community. And only through the flesh and blood of other imperfect human beings could religion have guided us through my father’s death. I asked a hospice nurse for a Buddhist chaplain, but in Middletown, where most of the residents are African American Protestants or Polish American, Latin American, and Sicilian American Catholics, she knew of none.
A gentle woman in a blue dress introduced herself: she was Elizabeth Miel, a volunteer Episcopalian chaplain. We sat together, one on each side of my father’s bed. I told her that my father’s mother had been Anglican, and that when I was a girl in Oxford, England, my parents had gone to Communion regularly, and I’d gone to the Sunday school at St. Michael and All Angels.
There I was told that God was everywhere and saw everything, and I imagined God as a series of transparent shower curtains embedded with multitudinous fish eyes, moving in every wind. At night I’d kneel by my bed and beg for a sign of His reality. But God was silent, at least in the forms that I expected Him to speak. Until Saturday, when I would ride my bike to green fields bordering a stream and lie heart-side down in the mossy grass, letting the green energy rise up into me. There, I had an inkling of a wholeness beyond the logic of my family. I didn’t have to work for it. All I had to do was put myself in a position to receive. Green things continued to feed what I called my soul long after I abandoned any hope of ever seeing the luminous fish eyes of God waving in the transparent wind. I worshiped holy water and holy dirt long before I called it prayer.
There was nothing green in the hospital room.
The chaplain offered to give my father last rites. I looked over my shoulder, worried that my mother might walk in. I said yes.
The chaplain opened a little stainless-steel canister containing cotton batting soaked with olive oil, and made the sign of the cross on my father’s forehead with her thumb. Opening her Book of Common Prayer, she began reading from the Ministration at the Time of Death. “Look on this your servant Jeffrey, lying in great weakness, and comfort him with the promise of life everlasting,” she read.
My shoulders let down. I didn’t think my father would mind. It might comfort him. It was comforting me.
“Set him free from every bond, that he may rest with all your saints in the eternal habitations, where with the Father and the Holy Spirit you live and reign.” I liked the notion that the soul of my poor laboring father was going somewhere, even into the glorious company of the saints in whom I did not believe. “May his soul rest in peace,” the chaplain said.
She handed me a blue brochure with a drawing of someone with a halo on the cover, and together she and I read aloud the twenty-third psalm, which would comfort me on many nights to come, when I could not sleep. “Yea, though I walk through the valley of the shadow of death, I will fear no evil,” we said together. I barely knew the chaplain’s name. I let a breath fill the hole in my aching heart, and the warmth spread outward. “Thou anointest my head with oil. Surely goodness and mercy shall follow me all the days of my life, and I will dwell in the house of the Lord forever.”
After a while, Elizabeth got up and closed the door behind her.
My brother Jonathan arrived, touched my father’s shoulder, and said, “It’s all good.”
Three times in the course of my father’s long life, he had taken a step toward the ferryboat across the dark river, only to be blocked by luck, or fate, or medicine. First came his brush with accidental death as a teenager in the 1930s, on the warm desert night when he failed to catch up with the red taillights of the stolen car that bore two of his closest friends to their deaths in a ditch in the veld outside Cradock, South Africa, where he was born. Then came battlefield death, from whose strong arms doctors wielding penicillin and surgical knives wrested him in 1944 in a field hospital in Italy. Then came his natural death, curling like a cat in his slowing heart and stalking away when the pacemaker went in. Then came all the tiny deaths suffered as he lost, neuron by neuron, his memory, freedom, sight, hearing, balance, and personality. Now, at last, his final, merciful, difficult, and belated death threaded its way through every man-made obstacle, flying in on leather wings through an upstairs window quietly opened by my mother, who, by refusing to give my father water, food, or antibiotics, fulfilled her marriage’s final, tender, and brutal vow.
With my mother alone at his side the next afternoon, my father’s lungs and brain gave out, and he stopped breathing.
I got her phone call at the house and cried out like an animal. He had died without me. Then I realized he was no longer suffering and that he had not been alone — she’d been with him. As Jonathan and I headed for the hospital, our brother Michael was on the outskirts of Bradley Airport outside Hartford, hastily signing the papers to pick up his rental car. A hospice nurse hung a blue light on the outside of my father’s door.
Inside my father’s chest, the pacemaker was sending its tiny pulses to dead muscle.
We sat in silence, the three of us. We read no poems and said no prayers. My cellphone rang, and, like a fool, I flipped it open and talked to a man from a cremation service. I did not know enough to make the moment sacred, and I was bereft of forms that could have told me what to do or say.
We did not stay long enough to see peace descend on his features, although my brother Michael said that when he went alone to the hospital room a few hours later, he saw translucence and beauty in our father’s face, a reflection perhaps of the bliss of letting go and stopping all forms of striving.
Excerpted from Knocking On Heaven’s Door: The Path to a Better Way of Death by Katy Butler. Copyright © 2013 by Katherine Anne Butler. Excerpted with permission by Scribner, a division of Simon & Schuster, Inc.
