In 2012, Creative Nonfiction’s book imprint, In Fact Books, published a collection of essays about end-of-life care. It was an incredibly meaningful experience for everyone who worked on the book, which paints, as Francine Prose wrote in her introduction, “a complete, if disquieting, image of what the end of life is like at this point in our collective history.”
A decade later, having reached a different, and even more disquieting, point in our collective history, we thought it would be interesting to revisit one of the works from At the End of Life. In “The Business of Grief,” grief counselor and former hospice chaplain Joe Primo considered how we might better care for the dead and console the bereaved, and emphasized the importance of being present for each other.
Of course, that’s been one of the cruelest consequences of the COVID pandemic, which left so many people to die in isolation, unable to be with their loved ones at the end of their lives.
We invited Primo to write an update, or companion piece, to “The Business of Grief,” which follows the original essay. (Or, jump there now.)
Some years back, shortly after graduating from divinity school, I joined a few colleagues in the backroom of an Italian restaurant in rural Michigan to discuss formaldehyde and the embalming of babies with a funeral director, a “death midwife,” and a couple of “tree-hugging” experts in green burial. We talked for hours—about laying out bodies in living rooms over bags of dry ice, sawing off heads for cryogenics, and alternative funerary practices. At the time, I was a hospice chaplain, and my colleagues at dinner were others in the field who shared my concern about how we care for the dead and grieving. During four years of working at the first hospice in the United States, located just outside New Haven, Connecticut, I had seen plenty of dead patients roughly handled and stuffed into body bags minutes after death. I had witnessed the dead become hostages to outdated laws, such as regulations about who can handle the dead and when and where they can be visited, and common funeral rituals like embalming, which I found bizarre. I saw the separation of the family from the deceased during the first days after the death, a time when touching and seeing the dead can help the reality of death settle in for the survivors and when significant and beneficial grieving can occur. I wanted to work toward changing the ways we handle the dead, the earth, and the grieving. I believed then, and I still believe now, that funerals, like most rituals, are essential to the mourning process. What is not essential, however, are the merchandise and accoutrements that accompany a funeral. In fact, these are downright wasteful.
It was midspring of 2007 in Michigan, and I had traveled from New Haven, Connecticut, to speak with a farmer who faced bankruptcy because the educational programs he ran at his farm were unattended. But now he’d come up with a new savvy business plan to protect his property from development, a scheme that utilized green burial practices and would replenish the local ecology as well as protect his one hundred acres, a corridor to a state park.
Every ten acres of cemetery has approximately one thousand tons of steel, twenty thousand tons of concrete, and enough wood buried in it to build approximately forty houses—not to mention enough toxic chemicals to embalm a village. Green burial consists of a hole, a biodegradable box, and a nutrient-rich body. In 2007, 2.4 million Americans died, which means it doesn’t take long to fill a ten-acre lot. If the farmer could persuade the township to permit him to use his acreage as a green cemetery, it would be a win-win situation for the farmer and for the land, and I went to help him make the pitch and fine-tune his business plan. The visit lasted a week, during which I served as a consultant between the farmer and the Green Burial Council (GBC), which was responsible for bringing me out there. If the farmer had ultimately decided to go the green burial route and if permits had worked out, I could have managed the conversion process and become director of one of the country’s first green cemeteries.
The GBC has come a long way in the four years since its inception, but in 2007 it was still a startup, and I was broke and not entirely sure it was the life path I wanted to take. The farmer couldn’t compete with the multimillion dollar Catholic cemetery and its marble mausoleums that had just opened in the next town, so he chose to accept his financial struggles for the time being and continue in his efforts to teach children about sustainability. Thus, instead of immersing myself in the green burial movement, I decided to work with grieving children. In a society that is unsure of how to handle death and unable to support a grieving person adequately, especially a grieving child, I felt my earlier experience at hospice provided me with a perspective that might help change the way we support the bereaved.
Grief has been my profession for six years now, but it took root in me when I was fourteen, when I witnessed my great-aunt die of a heart attack at her kitchen table in rural Maine. It took paramedics almost an hour to arrive. Just as the compressions of my uncle’s palms forced his wife’s heart to beat, I was forced into the direction of grief. I didn’t begin my exploration of death with the goal of becoming a professional. Instead, I wanted to talk about the experience and examine life and death, to try to understand them. Since that moment in Maine when I saw my aunt breathe her last, I’ve witnessed hundreds of people die. Just before they go they’re like fish out of water—they gulp and sigh and make suffocating noises and confused faces. Then they go blank. I’ve held their hands. If it was their time, but they refused to go, I’d say, “It’s okay. I’m here. We’ll do this together.” Sometimes that’s all they needed, someone to give them permission to go.
In the fall of 2009, I had a new perspective on personally dealing with grief and dying when my grandfather was diagnosed with stage IV lung cancer and faced imminent death. The disease had had its way with my grandfather’s body. I was inconsolable and far from ready to say good-bye to him. When my family gathered around my grandfather’s bed in Massachusetts General Hospital in Boston on the last day in September, I refused to let my grandfather’s hand go. If I held it to the end, I thought, I could be a companion to him as he moved from life into death. We’ll do this together, I thought, as I’d done with countless others. During the many sleepless nights I’d spent in his hospital room that week, I’d been preparing for this moment, imagining his final seconds of life and how I would feel when he died. As the nurses’ shift changed, the room darkened, the theater lights dimmed, those of us family members present were quiet with anticipation. We counted the seconds between my grandfather’s breaths in the same vein as the nurses had measured milligrams of his urine output to see if his kidneys were working, trying to determine the speed at which death was arriving.
After it was clear that my grandfather hadn’t breathed in a couple of minutes, my father pronounced him dead.
“He is gone,” my father said in a perplexed and relieved voice. Silence surrounded us. Sniffles sporadically filled the air. All eyes were focused on the hospital bed, which was lit only by a dim light overhead, as in a museum. The windows were black, and we could barely see the lights on the gold dome of the state house through the tinted glass. I looked down at my grandfather and saw that his life had left him. His jaw had stiffened, his blood had begun to disperse beneath his skin, leaving the blotchiness people get when they’re nervous.
Then, suddenly, his face took on a snarling look—pain-free but almost enraged—and he reached up and grabbed my grandmother, yanking her toward him like a dumbbell, as if to say “There is no way I can leave you.”
At the moment of my grandfather’s reanimation the sound in the room rose from the hush of angelic choral music to full-out shouting from the sidelines, and I was the coach. Without pause, I pressed my head against his. Head to head, I spoke through my tightened chest, yelping in a baritone that seemed some voice other than my own, “You can do this, Grandpa! You can do this, Grandpa. You just have to let go. Just let go. Come on now, just let go!”
He needed to let go, and so did I. The presence of death was in that room, in its odors and sounds. And then, for the second time, he was dead. His mouth open, his tongue a burnt color, his eyes murky. When my grandmother called out to her dead husband, the grief moved deep inside me. This was my loss, too, not just hers, and I couldn’t maintain my professionalism. My skill set was as useless as a hammer in this hospital room.
I walked into the hallway to clear my head and to catch my breath, unable to sit or stand, filled with the need to move while I was transitioning to an emotional numbness, but my father called my cousin and me back to the room, empty now, except for my father and my dead grandfather. He stood over his dead father. “We will wash him,” he told us. We raised the hospital bed and filled the washbasins. We stripped my grandfather of his hospital gown. He lay there, a catheter snaked from his groin. My father handed me latex gloves.
“He’s your father,” I said to my dad. “Take off those gloves and relax. Let’s be sure not to rush, this is the most we can do for him right now.”
We dipped washrags into the pink basins and worked our way from my grandfather’s head to his toe, washing the Gold Bond from his underarm, belly button, penis, and thighs. As I moved my washrag about, I watched my father and myself in the reflection of the massive hospital windows overlooking Boston. Our labor of love was reflected there, and behind those windowpanes were the seas where my grandpa once fished and fed his family. The Italian neighborhood where he grew up was only a few blocks away.
“Look at this body,” my father said to my cousin and me. “He’s a bull. Can you imagine having this body at eighty-four? He’s built like a rock.”
As his rag swooshed in the water, my father talked to my grandfather through each move and each rinse. “Okay, Dad, now we’re going to clean behind your ears, and put you on your side, and clean up your hair.” My cousin slowly pulled the catheter from my grandfather’s body. With a little tug it was out. He took out the IV line, and we paused. Grandpa was unattached to anything, machines, places, us. He was simply gone.
We tilted him on his side and untucked the sheet from the bed, pressing it against his back. He was stiffening. We tilted him to his other side and removed the sheets from under him, replacing them with clean sheets. We put a fresh hospital gown over him, and we pulled the sheet up to his waist, placing his hands by his side. We gently combed his hair. I pressed the button at the end of the hospital bed, which lowered it, and the rest of my family reentered the room to say good-bye to him and each other. I remained behind until the nurses came with a large plastic bag and more latex gloves. That was my cue to go. The nurses gave me a look that said, “You’re done now and he is ours.”
The years I’ve spent as a grief professional have taken their toll. I’ve changed in ways both known and unknown to me. Some days I feel as if I’m simply waiting to feel death’s sting myself. I’m far more aware of my own impermanence and the impermanence of others. And as I lose the important people in my own life, my perspective is maturing. I know that life is temporary and fragile.
In my days as a hospice chaplain, I told myself I had to persevere. I had to stand at a dying child’s bedside because my listening and caring might help. When the demented died, shouting the names of those who didn’t visit, I had to be present because it was the right thing to do. When the dead were carted off to the morgue minutes after their death, shuffled away without anyone appearing to acknowledge what had happened, I went into that cold room and blessed them. I stood over them and held their name in my memory, if only for a moment. I said prayers I didn’t believe, respecting that many of my patients had a “come to Jesus” moment and had returned to their childhood religiosity. This role asked me to step outside myself and offer whatever the patients needed, whatever comforted them. I once held a hospital curtain over my head because I didn’t have proper head covering, a religious protocol for making room for Yahweh, as a widower wailed the Kaddish. I fell to the floor once and sobbed on the night a thirty-five-year-old mother of two died. I had known her for months. My professional boundaries were breached for this friendship. There were no support systems in place for this grieving family, nothing to help her children, and nothing I could do to help.
I did these things because I believed there was meaning in them. I thought maybe my reward might be in heaven or maybe I could somehow circumvent death by being entrenched in it. As I reflected on my work and why it was important to me, I vowed I would be present when the important people in my life died.
The value of what I’ve learned in my work, especially at hospice, was the ability to listen and be present, to stand in the presence of pain, and to pay attention to the people in my life and the needs of my community. My redemption was in the ability to be present to my grandfather and to connect with him in his final moments, completely aware of his departing and its finality. I was able to grieve at a time when it would have been much easier to be a professional, guarded by boundaries and present to everyone except myself.
I was able to experience the death of my grandfather fully, but I worried about how I would experience his funeral. Two days after my grandfather died we were reunited at a conventional funeral home, a corporate-style building with retro 1950s rugs and morticians around every corner. Because of my brief tenure in the sustainable burial movement, walking into that place felt like dumping batteries in the village creek. As I navigated the hallways, I arrived at my grandfather’s viewing room. There he was, in a bluish gray casket that matched his 2005 Honda Accord, apparently a last request. Plastic Pietàs were on all four corners of the casket, and an image of the Last Supper hung from its open lid. He looked like a doll, made-up with cosmetics, his fingernails painted pink, his mouth sewn shut. He looked like he did twenty years ago, thin lipped.
During my green burial days, just four years before, I had given him a lecture about how our country’s mortuary practices are a drain on our natural resources. Embalming fluid is highly carcinogenic, I told him. The complex embalming procedures are mutilation—with draining, probing, slicing, dicing, and even some fine sandpapering. He was sitting in the family room when I decided to enlighten him about these things, despite the fact that we had just finished one of my mother’s typical eight-course holiday meals. I walked him through all of the business of death.
“Gramps, they’ll throw you into a bag, shove you into a fridge, put you on a table, and then have their way with you. They’ll cut you up until you begin to look something like your former self. It’s nasty. We can do this so much better if you go organic. We can even decorate your casket and make it cool or something crafty, like you,” I said sitting on the floor, looking up at him, hoping I could convince him to plan a green funeral for himself.
Now that I was faced with his casket, staring at him, I wondered if what I’d told him would happen to his body had happened to it. When I’d told him the macabre details about preparing dead bodies and old-fashioned funerals after that Easter dinner, he’d responded in a firm, annoyed voice: “This is the American way, and this is how we do things here.” His Sicilian friends had told him about the supposed stench in the old country’s cemeteries. He would have none of that for himself. He didn’t want to rot too quickly; it was important that the crowds come and mourn. This is the way his friends are buried in America, and he liked things to be conventional.
That tacky casket, one that Batesville Caskets warranties for five years with the exception of any “acts of God,” presumably including resurrection, is one of thousands used every year. We use enough metal in caskets and underground vaults that we could rebuild the Golden Gate Bridge every January. The embalming fluid they pumped into my grandfather causes a higher incidence of leukemia and brain and colon cancer in funeral directors. The waste from the dead, along with embalming fluids, is pumped into the sewer, draining straight off the embalming table and down the drain, accompanied by the bleach that’s used to disinfect the body. This waste goes straight to the water treatment facility and then makes its way back into our drinking water.
This process helps provide future customers to the guy standing at the porcelain table, shoving his trocar into every orifice of the dead, dripping those fluids deeper down the drain. These facts contaminated my thoughts as I stared at my grandpa. The environment of a funeral home is sterile. The dead are on display. There are special pink lights to make the dead glow and lots of distractions, like flowers and pictures. This was the next phase of our good-bye, and my grandfather was the showpiece.
In my early study of death, I learned that the way we care for our dead is a ritual we have maintained since the Civil War, when as a country we were fascinated by the fact that Abe Lincoln’s dead body could be trotted around the country for two weeks and not smell like spoiled chicken. And now we’ve taken the process even further: we have removed the family and inserted a concierge service that controls our grief by constructing an environment that inhibits intimacy. The funeral home is a stage; it bears no resemblance to the places the deceased frequented, despite the pictures we bring and the memorabilia we provide. It is a place where lines form and faces pass through, most of which the bereaved family won’t see again during the intense months of grief after the loss. We have constructed a ritual that helps us to distance ourselves from the rawness of grief until the body is “properly disposed of.”
When my grandfather’s funeral procession arrived in the pouring rain at St. Michael Cemetery, the old Italian burial grounds of Boston, there was the family plot, waiting with a fresh hole, covered by a green canopy. A seven-foot-tall Madonna carved of pink granite marked the spot.
My Lord, Jesus, that hole was deep. To the right you could see the vaults of my uncle and his wife stacked one on top of the other. Straight ahead were my great-grandparents and my other uncle. A marble slab anchored the plot firmly, and at the bottom of the hole was a Monticello vault full of water from the unending rain. My grandparents were married on a rainy day, and my grandfather said he would be buried on one, too. So it happened. We hovered beneath the canvas canopy that covered the hole, and rain poured down from all four sides, pooling on the green turf at our feet.
As the casket was lowered into the ground, the metal clanged against the concrete when it dropped the last foot of its descent, coming to rest, finally in its pool of baptismal waters. A metal contraption was fired up, like an enormous leaf blower. The tractor carried the lid of the vault to the grave and more concrete was added to the already tight hole.
The sacred moment I’d shared with my grandfather two days before, when I’d helped wash and dress him, was gone, wiped away by an industrial burial—metal boxes, Cadillacs, and enough concrete to build a foundation for a bungalow. Rest in peace and carcinogens and concrete and all the shiny metallic stuff you could ever need for the afterlife, Gramps. It was a disappointing ending for a simple man.
And, I wondered about the money we spent, money my grandmother could have used to help her now that she was left a widow with a single income.
I was very much aware of my own emotional needs while my grandfather was dying and during those hours we spent at the funeral home. When I speak with grieving children and families these days, I carry these feelings with me. When I helped my grandmother choose that bluish gray casket, it was her need, not mine. When I listen to a mom tell me about how her son hanged himself, I know it is her need to tell, and I must respect it.
There are a few things about death we can control; our emotions are not among them, though we can control our story and how we share it with others. Death is not a choice, but much of what happens around end-of-life care is about options. We can receive countless expensive treatments for a terminal illness because we want to fight to live. But we also have the choice to surrender. And as our days wind down, we can choose to return our bodies to the earth in a natural, community-minded way, or we can go the traditional route because we want our caskets to match our cars and our friends to be impressed.
Grief, like death, can be engaged or the subject avoided. We can compartmentalize it, project our expectations of what grief should look like onto others, or allow it to be and see where it takes us. Our lack of control over death is probably why we are so interested in the details of dealing with it. Perhaps that is why we maintain some of our thoughtless rituals, despite the consequences.
If we choose to engage grief, what is at the core of caring for bereaved children and the widowed? What is it that my grandmother needed more than anything? I have stood by countless people as they grieved, and others have stood by me. I have heard funeral directors, chaplains, social workers, and death midwives propose many products and beliefs to alleviate grief. I have learned that grief is not like clinical depression, schizophrenia, or anxiety, which can be diagnosed and treated. The grieving need someone to say “I see you, I hear you, I understand you are hurting and you can tell me more.” It’s a witnessing, as when a playful child demands, “Watch me on the monkey bars.” Just watch me do this important thing. Stand there and watch. I may need a little cheering from the sidelines, but just show up and be there for me. Sometimes it takes the bereaved years to surrender to the fact that death has arrived. A true friend will just be present to another’s grief, even if that grief seems inconsolable: an empathetic human presence brings comfort, though it might not at the time be apparent. My experiences as hospital chaplain, hospice worker, green practices theoretician, grief counselor, and grieving grandson all tell me this is true.
“The Business of Grief,” Ten Years Later
When I wrote “The Business of Grief,” I was concerned with the very physical aspect of grief. Because of my work in hospice and as the CEO of the children’s bereavement centers at Good Grief in New Jersey, I thought I had a realistic perspective on death: death itself is a fact, but how we handle and dispose of our dead is a choice. I was—and still am—disappointed in how we respond to death by trying to pretend it away through products and services that conceal the truth of what happens to us when we die. A decade later, American funerary practices are still an environmental and spiritual mess, but I have realized that focusing so narrowly on that aspect of death—how we treat the body—was distracting me from the more difficult choice that death presents: knowing that we are all finite, how do we choose to live?
With a pandemic that stalked our day-to-day lives, what we do with our dead has become a more top-of-mind question in our culture. Over the last two years, many families were denied funerals for their loved ones. We heard about bodies stacked in U-Hauls and refrigerated trucks parked on the streets of New York City. Farther afield, news reports from India showed us mass cremations, rows upon rows of funeral pyres, during the height of COVID’s ravages there. These are experiences of trauma reminiscent of the American Civil War—a war that caused so much death that it changed the psyche of Americans and how we talk about death and grief.
Our culture in the nineteenth century prioritized dying well—and therefore living well—as a moral and spiritual necessity. People were in the habit of openly discussing death, their individual mortality, and their dead loved ones. Whereas our modern culture behaves with an assumption that most of us will live until we’re ninety, our ancestors lived with the reality that death could arrive at any moment, especially for children. As a result of this awareness and anticipation, they prioritized the virtues of their time. Today, we might say they focused on living in the present. But, between then and now, this cultural norm radically changed as a result of the number of casualties during that war. The collective trauma of a generation led to an almost instantaneous shift that persisted into the twentieth century, and in fact we still feel the repercussions today with cultural norms like expecting the grieving to “move on” and “recover” from their grief in a timely manner. Talking about death does not come easy to most Americans. Since the Civil War, we have compartmentalized the feelings that accompany grief, and we have lost our shared language and traditions on how to embrace grief as a significant component of the human experience.
Now, once again, we are in a period of mass, collective grief. There are too many bodies and too much disruption to deny it.
Well before the pandemic, I was becoming increasingly disturbed by the ongoing ways in which we fail to remember the dead and, consequently, the past. Remembering can positively change us, if we let it. My work has taught me that those who have experienced the death of many cherished people learn something about the power and value of presence, both in the living and the dead, and about their connection not just to the past but also to the future.
A month before I sat down to write this reflection, my ninety-four-year-old Sicilian grandmother died. She had avoided COVID, but her heart gave out on her at the end. Tina—who, you should know for your understanding of her Sicilian-ness, was really named Vincenza—lost her mom when she was a teen. Shortly thereafter, her youngest sister died. She would eventually lose four of her siblings, as is common in a long life. And, in addition to losing her husband, my grandfather, shortly after “The Business of Grief” was published, she also lost her oldest son.
When people die, our culture has a grim habit of casting them into the past rather than incorporating them into our present and future self. Memories vanish, names go unmentioned, acknowledgments of grief go unspoken, and yearning for the dead has become pathologized rather than normalized.
But that’s not the approach Tina took. Each and every day for the remainder of her days, my grandmother spoke aloud to her dead husband and son, and then, later, to her sister Gracie, who had been her closest surviving sister, whose heart gave out just ten months before Tina’s did. Tina chatted so constantly and comfortably with these three that when she was put on hospice, the nurses initially assumed she was hallucinating.
As I look back over these past ten years and my work with the bereaved, I can see that Tina made death interesting for me in new and significant ways after my grandfather died because she was doing something different from most. In her prayers and recollections, and in both her loneliness and her days with friends around her, she wanted to invoke the presence of the dead. She acknowledged their absence, as we do with the smell of smoke from a spent candle, always checking to make sure there isn’t a fire. She accepted the impact the dead had on her life. But she also acknowledged the impact of their absence on her future. The hue of our existence changes when the people we love leave us; someone may be physically gone, but their absence causes a disruption that permanently sustains their presence, even if we try to look away.
Tina sought to integrate her relationship with the dead into her living. Her approach showed me that relationships are not trapped in a place or time; they are carried forward. Witnessing Tina’s grief—in all of its Sicilian-ness—changed how I did my work. I encouraged thousands of children at Good Grief to ask themselves: What will I do with my special person? Not their body or even their absence, but rather their enduring presence. At Good Grief, we created “Living Memories” rooms at our centers. These rooms give children a space to draw how they are encountering their loved ones. They create memory boxes full of mementos accompanied by stories to share. And lastly, a wall is adorned with items, such as playbills from dance recitals and concerts, that honor all the ways the deceased are remembered by their children or siblings in their daily lives.
In our collective lives before the pandemic, I worried that we were unable to be present to children and people who were hurting. Now that all of us are hurting, I wonder, how will we show up to support each other? What is the narrative we will tell a future generation about how we grieve as a people and how we integrate our dead into our living? These are unknowns that I believe need an urgent and collective answer so that the grief of today does not simply stack upon the grief of yesterday. As we have seen in the past, a compounding grief effect forges unresolvable dysfunction—severed relationships and communities, and the denial of complex emotions, thoughts, and existential questions. But grief can also give us a profound choice by allowing us to make meaning out of loss. Grief can help us evolve.
Failing to engage the layers of our grief and loss will leave us vulnerable, likely to self-soothe, as they did in the late nineteenth century, to try to avoid the pain caused by this pandemic—by the differences and indifferences that were laid bare, and by the loss of so many lives. Doing the difficult work of grief, rather than hastily attempting to return to our way of living before the pandemic, will help us develop resilience and define a new normal. We must find a way to integrate this experience into our collective identity and culture. In doing this, we will also be role-modeling resilience for future generations and preparing them to face adversity. This is a gift our culture was denied by our ancestors when they emerged from the Civil War, and the loss of it has followed us since. Now, the hue of our existence has changed as a people who survived a pandemic, and we are simply left to consider how we will choose to live.