Dying Is the Most Intimate Space We Ever Share
Western society has forgotten the skill of sitting with someone in active dying. Overcoming fear of the unknown is our first step to reclaiming it.
I began a perfectly ordinary day in the life of a student nurse by washing Ginger Rogers’ face. It was the early 1980s, and I was on work placement at a hospital on the south coast of England. My patient had been brought in during the night, unconscious from a brain bleed but breathing without assistance.
As I rinsed the washcloth, his chest rose and fell, the tattoo of Ginger’s broad smile lifting and nodding encouragement with each breath.
Jack was in his mid-seventies, and the hand-poked tattoo on his chest, along with the swallows and anchors on his arms, told of a life in the Navy. There was a jaunty sailor’s cap over the India ink puddle of Ginger’s curls and under her chin, her name in block letters.
Ginger had been a slang term for homosexuals in mid-century Britain, and as the days passed with no visitors and no calls from family, I wondered if this was some kind of clue. I knew the state of this man’s brain yet knew nothing about his life.
I hadn’t yet developed a sense for such things, but the older nurses knew Jack was dying. They pushed his bed to the far end of the long, Victorian-era hospital ward. Beds marched up the walls to left and right like teeth on a zipper, surrounded by the hushed voices of worried visitors and tired doctors poring over their notes. Jack’s bed in the bay window was a haven of peace.
I took my place in the rotating shifts of nurses providing comfort care to Jack. I practiced my new skills, checking his blood pressure and neurological reflexes. I bathed him and protected his skin from pressure sores by turning him regularly, one side to the other. His face towards one window, then over again to the other.
The bayed windows made it feel as if we were in the bow of a ship, Jack, Ginger, and me, heading into the wide blue expanse beyond the ripples of tiled roofs below. Under those roofs, lives bobbed along on currents of time that had forgotten our quiet backwater at the end of the ward.
As a former nurse and a death doula, I know there is no such thing as a typical death. Each active dying process, the final shutting down of the physical body, is unique to the person, cause, and circumstances. I offer what follows not as a map to navigate a particular death but as an introduction to the global landscape.
Dying is a journey, a turning inward and moving away. When someone is dying, their interest in matters of the world falls away as they accept fewer and fewer visitors. Often, they spend more time in sleep or a kind of semi-conscious twilight.
Dying changes the quality of time, casting a liminal space around those who are emotionally close to it. This sense of being in a time outside of time might allow moments for quiet reflection, but that doesn’t make it an easy or peaceful place to be.
Dying is labor, just as birthing is labor. Every dying is a unique orchestra of effort, breath, and heartbeat, rendering a score of symptoms and transforming the physical body.
And something else is happening, too, something metaphysical. As visitors, it isn’t available to our regular senses, but sometimes, if our pain and fear are quiet, we might sense it. If we are fortunate, it might be glimpsed at the edge of consciousness like the essence of a half-remembered dream.
Jack slipped quietly away during a change of shifts; he died alone. Does that sound terrible to you — that no one was there holding his hand? Yet it happens even at the most well-attended bedsides.
People who are recently bereaved often feel a need to tell the story of their loved one’s death. Surprisingly often, I hear them say that their loved one died when they weren’t there. Perhaps they stepped out to eat a meal or ran home for a change of clothes.
I think of a dear man who died recently with his room filled with family. Late into the night, they had all fallen asleep and missed the moment. At the funeral, one of his sons gave the eulogy and joked, “… for the first time ever, you were the last person to leave the party”.
There is often regret, even guilt, when this happens, yet I wonder if the timing is a coincidence.
Perhaps that will be me one day. I tend to hang around long after a conversation holds any interest for me, feeling too awkward to interrupt. I can imagine taking advantage of being left alone to collect myself and depart in private.
But who knows what goes on inside anyone’s consciousness in the closing moments of life?
It is exhausting to sit with someone who is dying. Disrupted sleep and eating habits knock you physically off-kilter, and the tasks of your regular life, continuing on in the background, require time and attention.
Waiting and watching amplifies feelings of powerlessness, especially if symptom management is not going well and your loved one is suffering. With your heart already experiencing the strong tidal pull of grief, your mind wanders on ahead, anticipating relief and release.
When active dying continues for many days, deathbed companions and sometimes the dying person can find themselves asking, ‘Why is it taking so long?’ Like my genial old friend who had been wrestling with the final stages of pancreatic cancer for weeks. When asked about visitors, his courtly manners finally gave way, and he growled, “The only person I want to walk through the door is the undertaker.”
I increasingly hear of deathbed companions giving the person doing the dying permission to leave. I know of a few cases where encouraging the person to ‘let go’ made a difference, but I’m not convinced giving permission needs to be standard practice. It can be a setup for failure because it implies that we have a responsibility to ‘perform’, which is unhelpful, and a measure of control over death that is untenable.
It is a hard thing to sit with uncertainty, especially in a culture that rushes to fill any uncomfortable vacuum and come up with an answer to every question. And yet, most of us are stronger than we know.
Another nurse drew the curtain around Jack’s bed while I went to gather what we needed for his laying out. When I returned with a bowl of warm water, the morning light was at his back, and I opened a window inviting the breeze.
As we washed and turned and shrouded the soft, heavy body, I felt the familiar peacefulness around Jack’s bed fill with a new, different stillness. No words were spoken as we cared for Jack, yet it felt like sharing a prayer.
Many years later, a friend described a similar experience in very different circumstances. Allison had rounded a bend on a country road to find an over-turned cement truck and a car with its front end reduced to a crush of steel and glass.
The driver of the car was alone, folded over the steering wheel, and clearly beyond the help of first aid. Intuitively, Allison climbed into the seat behind him and placed her hand on his back below the thick hair that curled over his tidy shirt collar.
A 32-year-old life she didn’t know ebbed silently away as the sirens of emergency vehicles raced towards them. I can think of no more powerful example of compassion.
Western culture does little to prepare us to offer such grace. Media representations, be they news or entertainment, focus on pain, sensationalism, and the macabre—no wonder so many conversations about death are driven by fear — when they happen at all.
Movies and TV would have us believe that dying is either an action-packed drama with surgery and CPR or a series of wistful speeches and fluttering eyelids as if death comes like puffing out a candle or switching off a machine when it is seldom either.
We used to know this. Little more than a hundred years ago, dying was a family matter that we usually took care of at home. In the time before modern medicine, we grew up around the slow decline of aging grandparents and the ravages of cancer and heart disease. We laid out our dead at home and held vigils, even funerals, there.
We no longer have space in the parlor for a casket, but there is growing interest in a return to dying at home. Overfilled hospitals and the exorbitant cost of in-patient care make home hospice and palliative care services an appealing choice.
Baby Boomers seeking a more holistic and autonomous experience are hiring death midwives and doulas who, similar to their counterparts who help during pregnancy and birth, provide specialized support for families during the dying process.
More than half of Americans now die at home, and the number is growing. Business and industry are taking notice, and new technologies are coming to market to help with practical matters like symptom management, planning, and communications. The goal is to make it easier to ‘die peacefully at home surrounded by family’ as most Americans would prefer.
As I chose a title for this essay, I pondered the word intimate. It is so often used as a discrete allusion to sexual activity; intimate apparel suggests something indecent and probably distasteful. Recent culture projects a similar ugliness onto matters of death and dying, insisting we speak of it in hushed tones or preferably not at all.
Yet, ask a thesaurus for synonyms of intimate, and the words offered include loving, faithful, profound, personal, familiar, visceral, devoted, and cherished. So much beauty, so much showing up with authenticity. Intimate is the perfect word to describe the space we enter when we accompany someone on their deathbed.
From what I’ve seen and heard in the world, I believe we can all develop our capacity to sit with the dying. It won’t look the same for everyone, but we can learn to sit with the feelings of powerlessness and grief and also with the profound mystery of it. There are gifts to be found there, and nowhere else, that can help us as we navigate our lives; there is no better help in finding your path forward than to hold a clear understanding that it will one day end.
Every dying and every bedside is different, so no one can tell you exactly what to expect. You can, however, expect that your experience will depend on what you bring with you.
To bring your fear is like trapping a handful of wasps in paper bag and placing it over your head. You can no longer see what’s in front of you, and fear mounts as you wait for the next sting. When your fear turns to pity or despair, you turn the wasps loose on the room and everyone in it.
Leave your fear at the door. The secret gift is that you’ll probably forget to retrieve it on your way out.
Instead, ground yourself and try to find some sense of peace, even if only for one space between two breaths. Enter with an open mind; you are learning about a destiny you also share.
Bring a compassionate heart and listen with love to what can’t be unbroken but might yet be healed. Because, as those who know the space of death and dying will tell you, it can be a place of beautiful, life-affirming, and even life-changing experiences.
Thank you so much for reading my story.
If you find this topic interesting, check out my website, Morternity, or seek out a Death Cafe or Death Over Dinner group for community conversation.