Everything We Need

dad pic couch (2)

The home hospice nurse, Maureen, told us not to blame ourselves if we missed Dad’s death. She said that terminally ill patients often choose when to die and often do so when they are alone. But Mom and I were not concerned. Dad always wanted us to be together, regardless of circumstance.

We all knew this would be Dad’s last Christmas; his final opportunity to see his young grandsons and my wife, Lindsay. His oncologist was good at the hard conversations, and Dad trusted him. “It’s a relief not to have hope anymore,” he said.

Christmas was always Dad’s favorite day. But instead of conventional decorations, he used to put a Hammer and Sickle atop the tree. It was a mischievous jab at capitalism, the consumerism of Christmas, and his strict Catholic upbringing. A professor of Marxist theory for nearly forty years, politics was Dad’s religion; the holidays, a mutually agreed upon time for us to be together. Growing up the eldest of four, Dad learned to love a full house. Now, with two thousand miles between us, he looked forward all year to the chaos of our extended visit.

When we arrived, Dad didn’t look quite as bad as I had expected. He had no appetite; his portions measurable by bite rather than serving. He couldn’t walk unassisted and struggled to catch his breath, but he was energetic and happy. He laughed and squeezed the boys as they sat together on the sofa in his den. “I’ve got everything I need,” he announced. “Everything I’ve ever wanted is right here in this room.”

On the morning of January 4th, my wife and sons traveled back to Minneapolis. That afternoon, Dad told Maureen that he was “done eating, forever.” Maureen nodded. “Yes, that’s fine. At this point, you can do whatever feels right.” The holidays were over; it was just the three of us now, and Dad was ready to go.

Later, as I stood at the refrigerator staring at a leftover roast Dad had cooked but would never eat, I heard him on his phone in the bedroom. “Jason will stay here until I die,” he said.

By January 20th, I had Googled, “How long can someone live without eating” enough that my question autocompleted after the second word. One Irish revolutionary went for ninety-six days; Gandhi for twenty-one. But neither of them was already dying. I imagined Dad’s body made of only bone, blood, and toxic chemicals.

Each day he grew weaker, more confused, and less tuned-in. And then on the 25th, he drifted into something of a fugue state on the sofa—half sitting, half lying down, staring at the carpet—his consciousness still present, but no longer under his control. When I asked him if he wanted to go back to the bedroom, he appeared to nod.

We don’t believe in the concept of a soul, but if we’re wrong, a soul was all he had left.

That evening Maureen told us that Dad had only 24-48 hours left and that it was okay to tell him he could “let go.”

Mom and I were having dinner in the dining room when she glanced over at Dad. “He wants us to come in,” she said, later telling me that he’d gotten her attention by opening his eyes widely.

Mom got on the bed and rubbed his forehead. I put on his favorite Miles Davis album; sat in the chair I had pulled up to the side of the bed, and took Dad’s hand. Mom told him it was “okay to let go.” I said it too, and we both felt awkward, as if following a script. We knew Dad wasn’t waiting for our permission; he was requesting that we take our places.

He was silent and motionless; eyes closed. I told him that we loved him and that Lindsay and the boys wanted him to know they loved him too. “We all love you so much,” I said, breaking into tears. He opened his eyes in acknowledgment, and then closed them.

His respirations slowed; heart rate quickened. I tried to give him liquid morphine, but he refused with pursed lips and a weak scowl. We had been guiding him for weeks, but now Dad knew exactly what to do. He almost seemed like himself again—confident and resolute. Mom and I looked at each other with a mix of uncertainty, empathy, and wonder.

I could see Dad’s heartbeat in his neck. His respirations grew irregular. Two quick inhales, an exhale, and then nothing for thirty seconds. I watched his neck—heart still beating. Quick inhale, exhale, then nothing—heart still beating. Just when I had started to anticipate the pattern, Dad’s heart stopped. It didn’t slow down, speed up, or skip a beat—it just stopped. The official cause of death was “Acute Myeloid Leukemia” but to me it looked like Dad simply grew too tired to breath.

“That was it,” I said, calm but quivered.

Mom reached across Dad to grab my hand, and I put my head on his chest. I thought I felt his breath on my face, but realized it was just the weight of my head pushing out the air in his lungs—the remnants of his final breath.

At 1am, an hour-and-a-half after he died, we called hospice.

Mom wanted me to straighten out Dad’s shirt, as it had shifted up and around his shoulders to expose his stomach and chest. I hesitated, but then lifted him to a seated position as I had many times over the previous week. I half expected him to grimace or grunt, and the silence was disorienting. He was floppy, heavier somehow, as if his blood had turned to a weighty, viscous gel. I tried to guide him down gently but lost my grip, and Dad dropped onto his nest of pillows with a thud. The chasm between almost dead and dead is vast.

We stayed with him; silent, but together, privately saying our personal goodbyes. What else were we to do? Chant? Pray? Light incense? That’s not us, and that certainly wasn’t Dad. Without religious affiliation or spiritual beliefs, Mom and I had no rituals to guide us. Seeking the comforts of habit, we pulled the covers up to Dad’s chin and went into the living room to read.

I would forget for a few seconds what had happened, and then my chest would tighten, and the fear or sadness or panic—whatever that thing is in my stomach—would expand like it was alive. Dad is dead in there. The three of us was now the two of us

The after-hours nurse arrived at 1:30 to confirm the death. She let us know that the mortuary is slow. “Sometimes they take over an hour to arrive after confirmation,” she said.

Should we go to sleep? I wasn’t sure, so I went into the room to be with him again to nestle my head one more time into the boney pocket where his neck meets his shoulder. I inhaled deeply, wanting to remember how he smells. There was no one who liked me more; no one who thought I was funnier, cooler, or more interesting. He loved me hard, as I did him. We were made of the same stuff.

At 3am, two men in black suits arrived with empathetic faces and a gurney. “We’re sorry for your loss,” they said. It felt too official, too stately. Everything had been natural up until that point. Our family space, our intimacy—the incubator in which the three of us had grown to accept an ending—had been invaded by officials.

We waited in the dining room as they placed Dad on the gurney, and then we walked along side them as they wheeled Dad to the door. I had no impulse to pull back the sheet to get one last look at Dad. I didn’t want him to leave, but I also felt sated somehow.

They pushed the elevator button, and the four of us hovered there awkwardly. The ding startled me, and then they were gone. Turning back, the apartment felt empty. I never realized how much space Dad occupied—his presence, consciousness, and girth of personality filled the place. Those men had come and taken it all.

Mom and I took deep breaths, smiled that sad smile at each other, and realized there was nothing else to do but change the sheets as if a houseguest had left. Returning to the bedroom and seeing that the men in black suits had left a rose on Dad’s side of the bed, Mom and I collapsed into a tearful embrace, the top of her head tucked under my chin. Pulling back to arms length, we agreed that it was time for bed. I took one of Dad’s pillows to my room; Mom took the other.

After a couple hours of sleep, I awoke and made coffee. I glanced into the bedroom. Mom was in the shower, their bed empty and made. I went about my morning rituals, weepy, pacing around, keeping busy—more-or-less running from the grief that swallowed me whenever I was still. I couldn’t conceive of how I could live in a world without Dad. But I knew that, in time, I would learn.

Over breakfast, Mom and I agreed that we would travel back to Minneapolis for a week so we could all be together. Leaving Mom in the apartment she’d shared with Dad for the last two decades of their forty-year marriage felt so wrong.

I hadn’t seen my boys or wife in four weeks. The warm feeling of being together again was cooled by Dad’s absence. When Mom had a teary moment, my oldest son, who’s seven, hugged her legs, and my youngest, five, looked up at her, “BooBoo died,” he said. It was the perfectly innocent, instinctual, and nurturing acknowledgment we all needed. That’s right, sweetie,“ Mom replied, wiping her eyes and smiling. “BooBoo did die.”

A few days later, Mom decided she would sell the place in California, and bought an apartment a few blocks from us. The city will be planting new trees on our boulevard in the spring. I think I’ll put Dad’s ashes in that soil. All he ever wanted was to be around his family. For me, that tree will be a reminder, a symbol, of who he was and how much we meant to each other. With us all together, I too will learn that  everything I need and everything I ever wanted is right here in my town.

I'm a contributing writer to Parents Magazine, GQ, Psychology Today and some others. My book, "This is Ridiculous. This is Amazing: Parenthood in 71 Lists" is available here http://bit.ly/1exfm34. Look for two more books in 2015: "Must. Push. Buttons (Bloomsbury Kids), and an as-of-yet untitled memoir I’ve appeared on Comedy Central’s “Live at Gotham” and “Nick Mom’s Night Out." I live in New Jersey with my wife and two sons and enjoy making them laugh more than anyone else.

8 comments On Everything We Need

  • Pingback: On Saying Goodbye | life on purpose ()

  • Jason, WOW! You brought tears to my eyes and memories to my heart and head. Memories of you, your Dad and Mom, but also memories of my last days, hours, and moments with Sue (my late wife). There is so much more I want to say but I just don’t have the words.

  • Luann Winters

    Beautiful Jason! I always surprise people when I refer to my father’s passing as “The miracle of his death”! I cared for my father for a month before he passed and the only way to explain some of the things that happened was that they were miracles! Thank you for sharing your experience!

  • Thank you for sharing this beautiful reflection. Your stories are your father’s legacy.

  • What an amazing thing to write. I could barely keep myself composed. My mother chose to be at home, and with just my father. She knew my brother and I weren’t going to be there that day. Amazing how they know. I hope you and your mother are doing well, takes a long time to know how to live without a parent around.

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