Every patient has a story...

The Longest Ride

by Jason A. Thomas (JT)

A year ago today my mother and I departed from New York-Presbyterian/Weill Hospital in New York City in an ambulance bound for Regional Hospice and Palliative Care in Danbury, Connecticut. It was the longest drive of our lives together, and her last.

The decision to transition from her Manhattan hospital room overlooking the East River was, of course, among the most difficult decisions to make, and one that I, having been with her for many dire weeks, was tormented to make.

But by all accounts – including hers – it was time.

The many teams of doctors – surgeons and oncologists of all nuanced specialties – explored a myriads of strategies. And then, alas, all interventive efforts were deemed harmful and retreated, exasperated.

It was then that the palliative team re-emerged gracefully from the wings to consult me in the hospitals’ quietest hours as my mom slept beside my chairs, her mercurial breathing patterns shifting in rhythms unfamiliar in mortality.

By mid-morning, the decision had been made, the room was secured at hospice and the ambulance summoned.

Before departing from the hospital, we had to be sure my mom had an ample dosage of morphine and fentanyl in her system to prepare her for what was certain to be an excruciating ride, physically and, of course, emotionally.

It was the Friday leading into the Labor Day weekend and the mass exodus from Manhattan was surging outwardly toward the boroughs and beaches. Pulling onto the FDR Highway, located several stories beneath the hospital room where we had spent the previous two traumatic and exhausting weeks, we immediately found ourselves in tangled gridlock alongside the East River, flowing serenely beside us in the opposite direction.

I sat on the bench seat next to the rear ambulance door so I could hold her bare foot with one hand and her hand with my other. I stared at her as she stared out the small square window at the sunlit urban jungle, silent and with eyes calm but wide, reflecting on this next chapter arcing poignantly before us.

The previous 72 hours were pain-filled, angst-ridden and brutal, filled with repetitive and thunderous indications that her body was failing.

My mother’s care – even the attentive palliative care availed to her at the hospital – had crossed a stark threshold and we, the nurses and I, collectively recognized that our deepest attention and best intentions fell shy of what my mother truly needed at this junction; an unintelligible threshold that is only distinguishable once you are actively moving through it into unknown terrain.

I gripped her toes and beach-toughened foot and squeezed her hands. I slid upwards along the ambulance bench seat so that I could stroke her forehead and smooth back her silver hair, which just days before was lovingly detangled, washed, brushed and braided by a compassionate hairdresser named Wedlyn from the “glam squad.” It was profoundly comforting process for my mom, one that took more than 7 attentive hours while a fray of doctors and nurses made their hurried entrances and exits.

By the time Wedlyn had finished unknotting my mom’s hair, there was a mere palm-full of locks, testament to the care given to preserve one of my mother’s most iconic features.

As I sat there in the rear of the ambulance petting her forehead, I could feel a peace emerge in her increasingly relaxed brow –  a sign that the road ahead was, perhaps, softening in ways that only she knew…and one that I would have to start to find acceptance with in the inevitable and improbable minutes…or days…or months before us.

Nearly 3 hours later the driver navigated us off of the main expressways and onto the familiar windy, maple and hickory-shaded back roads of Connecticut, just a few dozen miles from the towns where my mother was raised and where she raised me.

We were again in the woods of her and my youth, and that alone was a mollifying landmark in this bitter journey.

After wending through the mottled light of those familiar New England roads, we finally arrived in the parking lot of the hospice center. Her pain had not escalated, and that was a welcome relief for both her and I, even as we simultaneously felt the ballast of arriving at a place defined by finality.

I cannot remember if any members of my family had arrived before us. But the hospice staff was waiting for us en masse outside the front doors and actively received us authentically, doting on my mom and I equally; offering both of us hands and embraces akin to those that my mom and I had just shared throughout the migration from city to country.

“Tell me about your mom,” said Ed, the Social Worker who greeted me.

“The morphine and fentanyl she’s on seemed to be enough to make the long ride tolerable,” I explained.

“No,” said Ed. “Tell me about the person who your mom is. Not the patient she was at the hospital.”

At that, the duty of advocating for my mom – for the first time in many weeks –  was replaced with the freedom to share in my mother’s humanity in the present tense.

Ed’s simple directives shifted my attention from the abstract clinical to the robust and rich reality that my mom – still vital in mind and spirit – was still with us on terra firma.

For me, it was a welcome opportunity to fully collapse into my own emotionally exhausted self.

Release.

Release for Mom.

Release for me.

Release for the both of us.

From that moment, the arc toward her last breaths on the night of September 9th, were mostly unlabored and pain-free breaths. Family and friends came and went, some toting babies and others with flowers and fresh sun dresses. There was even a nip of old smoky scotch shared among all of us, with my mom taking small finger licks of the elixir when she lifted a mischievous smile our way.

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Mom’s eyes and smiles rose and fell like the ocean tides she loved so deeply. And the scent of her preferred perfume, Obsession, filled the room whenever one of her dear friends came in to primp her.

When my mom passed at precisely 11:11 p.m. – the blue digital numbers the clock’s numerical projections illuminated on the ceiling inside –  she did so with her bare toes pointed into the air outside on the deck of her hospice room, gesturing to the stars above. Moments later a veil of clouds washed over the forest and eclipsed the stars, opening up into a cathartic downpour at 11:13 p.m.

I was there alone with her, again stroking her soft silver hair as the rain came down on her exposed toes. As she went silent I wailed and roared and laughed and spat tears away from my shaking lips as the storm thundered on.

After enduring so much struggle and pain in the previous two months, my mom was now at peace beneath the wet canopy of the rain-soaked forest of her youth, a dignified, victory of solace at the most profound transitions.

Peace Mom.

I miss and love you, always.

Jason A. Thomas (JT), your son.


Jason (JT) shared this beautiful, heartfelt story about his mother, Caryl N. Ford’s experience at the Center for Comfort Care & Healing. We are so grateful to have supported Caryl, JT and their family.