116 Days of Caregiving – Love, Loss, and Life in the Palliative Care Unit

Written by Stephanie Byfield, Death Doula

Stephanie views life through the perspective of death. As a Death Doula, Death Educator, Grief Specialist, and a psychospiritual therapist in the making, Stephanie strives to make the topic of grief, death, and dying more mainstream.

On December 21, 2024, I moved into a hospital room that wasn't mine. The palliative care unit became my home, its dim hallways and beeping monitors my new neighbourhood. My mother lay in the bed by the door, her breath slow and deliberate, while I unfolded my life into the narrow space beside her: a blanket on a twin bed, a toothbrush in the bathroom, a coffee cup balanced on a small table.

People think 116 days is just a number. I know it's 2,784 hours of learning the rhythm of nurses' shoes on tile, 167,040 minutes of holding my breath whenever my mom coughed in the night, and countless seconds of watching her sleep, memorizing the shape of her face.

It was the longest and shortest season of my life.

I didn't plan on becoming a full-time caregiver. No one does. One day, you're juggling work, errands, and weekend plans, and the next, you're sitting in a hospital hearing the kind of news that rearranges your entire world in a single sentence. For us, it came as a quiet truth spoken in the doctor's gentle tone: "It's time to start thinking about comfort."

Comfort meant palliative care. Comfort meant moving my life into a room with pale walls, a mechanical bed, and a view of a small courtyard. Comfort meant putting my needs on a shelf and becoming a 24/7 witness to my mother's last chapter.

The world outside kept moving, holidays came and went, winter melted into spring, but inside that unit, time moved differently. We lived in the in-between, measuring our days not by calendars but by blood sugar readings, medication schedules, and the steady rise and fall of her chest.

Some days blurred together in a haze of routine: breakfast trays, the soft knock of nurses checking in, and sponge baths. I learned how to fold hospital sheets with military precision, how to read my mother's face before she spoke, how to catch a cup of tea just before it spilled.

But other days stood out like splinters under skin, the day she stopped wanting her soup, the day I realized I had memorized the sound of her breathing, the day she told me that she wanted to die.

And then there was the day I got married in the palliative care unit, not in a white chapel with pews and stained glass, but in a community room down the hall. We decorated with flowers and soft lights, the nurses smuggling in extra vases and folding chairs. My purple dress was purchased from Amazon, my bouquet was small, but my heart was whole. I stood at the front of the room, holding my partner's hands, as my mother looked on with a smile that reached her tired eyes. She was there, present, witnessing, blessing the moment in her quiet way. In that instant, the hospital walls seemed to dissolve, and all that remained was love.

But love didn't always come easily from everyone. I wish I could say that being a full-time caregiver brought only support and understanding, but the truth is, some people made it harder. There were opinions about what I "should" be doing, judgments about what to do with my mom's possessions, as if she were already dead. Some relatives somehow made my mother's illness about themselves, adding their drama to a space already heavy with grief.

The hardest part wasn't the exhaustion or the constant vigilance, it was managing the expectations of others while caring for my mother. Ignoring guilt-trips disguised as concern. Swallowing the urge to scream when someone complained about how "hard" it was for them to come by for 10 minutes, when I hadn't left the building in days.

On top of all this, I was still working remotely and attending school online. My laptop lived on the hospital's side table, wedged between a constant flow of coffee and protein shakes. I'd toggle between answering work emails, writing essays, and refilling my mom's water, all without leaving the room. Zoom calls were taken in hushed tones while family members of the most recently deceased were crying in the background. Assignments were submitted in the dead of night, after she'd finally drifted into a restless sleep.

It was a strange split existence, my body rooted in palliative care, my mind pulled toward deadlines and deliverables. There was no such thing as "off" time. One minute I was a student, the next a coordinator, the next a daughter helping her mother to the bathroom. I became a master of compartmentalizing, but the compartments were constantly leaking into one another.

Still, even in that blur, some moments shimmered through the fatigue: a shared laugh over an inside joke, the feel of her hand in mine, the way sunlight would sneak in through the blinds and warm the blanket at her feet. These moments became my currency, the reason I could get up and do it all again the next day.

When April came, the air outside was warming, but inside the unit, spring felt far away. On April 16, 2025, I walked out of that room for the last time without my mother beside me. The chair in the corner sat empty. Her bed was stripped bare, ready for the next family who would call it home.

I had spent 116 days inside those walls, living every one of them in service to her as a caregiver, a daughter, a student, a worker, and, in some ways, a guardian of her final season. Those days held everything: love and resentment, grace and grit, quiet miracles and raw survival.

Caregiving taught me that time is elastic. Some minutes last forever, stretching with uncertainty and fear, while others vanish in an instant; you wish you could freeze. It taught me that not everyone can handle illness, and that boundaries are not cruelty, but survival. It taught me that joy can bloom in the unlikeliest places, even in a community room dressed in wedding flowers.

People sometimes ask me how I managed it all, the round-the-clock care, the remote work, the school deadlines, the constant emotional undercurrent. The truth is, you don't manage it. You live it. You show up. You adapt. You keep going because love demands it, even when you have nothing left to give.

Now, when I think of those 116 days, I don't measure them in hours or minutes. I measure them in small mercies: a smile through pain, a steady breath in the night, a moment of peace in the middle of chaos. And in that measure, I know I would do it all again.

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Stephanie Byfield, Death Doula

I’m Stephanie Byfield, an End-of-Life Equity Consultant & Educator dedicated to transforming how racialized communities experience palliative care, hospice services, and bereavement support. With an Honours Degree in Health Sciences, certifications as a Death Doula and Grief Specialist, and a Master’s in Psychospiritual Studies with a Certificate in Spiritual Care & Psychotherapy (in progress), I blend professional expertise with lived experience to dismantle barriers and foster cultural safety in care. My mission is simple: to ensure every end-of-life journey is guided by dignity, compassion, and respect for cultural traditions.