As Mom was dying, she found a daughter's love

Jennifer and her mother struggled to connect for a lifetime—until the impeding end made everything much clearer.

By Jennifer Clare Burke
Add Comment Add Comment | Comments: 0 | Posted May. 7, 2014

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This didn’t surprise me. More than once, she’d suggested she was ready to go. Her life, she said, didn’t have the same purpose or joy without my father in it.

In the ER, I measured her deterioration in minutes, watching her left eye socket swell while the right one grew more sunken. It was as if we could see the intelligence of the tumor as its troops took over.

A harpist entered our ER cubicle through the curtain without words and played haunting music as nurses flitted in and out. Standing near the head of Mom’s bed, I could see more clearly with each moment the delicacy of her flesh, the immediately apparent skull, barely protected anymore it seemed; the uncertain fingers.

Then a surgeon gave us the news: The cancer was most likely terminal. Still, of course, there were options. Surgery. Chemo.

“What do you think I should do?” Mom asked me, her head propped on flimsy pillows.

“What do you want to put up with?” I asked.

“Nothing. At 86, I don’t want to do anything.”

“That’s what I would do too,” I said. “That’s okay.”

“What about right now? Are we going home?”

“No, they’re going to keep you overnight for care.”

“Jennifer,” she said. “Stay with me. Get me through this. Get me to the other side of this.”

This time, I don’t just resolve to be there for her. I want to.


November 2008: Failure to connect

Mom’s sobs were strangely operatic as she walked in the front door, accompanied by her brother-in-law. “That thing wasn’t Harry,” she said. She meant my dad’s body.

I hadn’t seen it. I had no wish to say goodbye to the dead body itself without Dad in it. My farewells had taken place gradually, over the months I spent caring for him, making decisions with him, and finally giving the order for the “aggressive comfort measures” that brought his life to an end after a couple of days of coma-like stupor.

Her brother-in-law took her arm to guide her toward a seat. Instead, Mom approached where I stood in semi-greeting to acknowledge them. Crying more quietly, she took my hand and stared at it. “You’re so much your father,” she said. “You always were. Hands just like his.”

She was literally reaching for me across decades of being at odds. I couldn’t see it. My father had left me, and I didn’t feel the closeness with Mom that would let me share the pain of that loss without exploding in rage. From here on, I knew, it would fall to me, not her, to manage every detail surrounding Dad’s death and Mom’s future life.

Instead, I gently disengaged my hand from hers, walked into the next room and shut the door. I sobbed, alone, and I let Mom sit, alone, as darkness fell, to cry by herself. She didn’t reach for my hand again after that, and I didn’t offer it.

Years later, when I am next in a similar position, I will spend hours mourning, crying over every petty standoff between the two of us. Some of that will be grief; most of it will be shame.


June 29, 2013: My new mother

Within days of Mom’s diagnosis, I no longer recognized her. Strangely, that wasn’t a bad thing: Mom’s familiar emotional life—the fear, frustration and anxiety that had plagued her for a lifetime—wasn’t present anymore. This frail-bodied person, so physically different from the strong-armed, always-knitting, always-busy mother I knew, had also morphed into a different personality: serene, upfront, honest and openly happy over little things. I moved into the hospital with her on a cot by her bedside. She exhibited a comfortable, easy gratitude and trust in her silent moments with me; it was so natural that I began to wonder whether I’d simply missed noticing such moments during her healthy years.

My energy must have been different, too, because she kept thanking me. Even when I was just sitting there, doing nothing but being present.

After years of dispassionately tending to Mom’s needs because I knew it was my responsibility, I was now shocked to find myself repeating the very same reaction I’d had when Dad, my best friend in the world, had been dying in 2008 at this same hospital: The second I left the medical room with the dying parent in it, I began crying so openly and rhythmically that people gave me a courteous distance.

I cried hard enough to feel my pulse at the tips of my ears. The force was so unstoppable that I didn’t try to be subtle, to hide the snot or tears. I cried through the labyrinths of the hospital’s hallways and through the intestinal stairs of the garages. I cried at the dry cleaner and at the grocery store. Sobbing, I pulled my cart up to the check-yourself-out lines, where the clerk stood guard to make sure people weren’t stealing. She saw me coming, grabbed the front of my cart, dragged it to her station and started ringing me up herself without a word. People, it turns out, will show the most graceful kindness when they can tell you’re in actual agony, not just pissed or moody.

Then I cried in the shower and in my bed. I felt too old for this behavior, but I couldn’t stop, either. There is no suitable age to put hands on a dying parent’s body. No one is ever “old enough.”


Early July 2013: Transitional hospice care at home

After signing the discharge papers, Mom left the hospital via a bumpy ambulance. I stayed by her side as the ambulance unloaded her from the vehicle in front of our home, where hospice personnel waited, including a caregiver I’d hired for support. “The standard of care here,” I explained intently to anyone who’d listen, “is that of immortal unicorns who shit rainbow jellybeans. This must never change.” Fortunately, the daytime caregiver, Eva, didn’t need to be told; she tended to Mom not just with professional skill but with loving kindness.

During our first night back home, as a summer thunderstorm broke outside, Mom repeatedly told me and the caregiver that she was sorry to be a burden and ashamed to be need all this help. “Do thunderstorms ask permission?” I asked her. “Do they apologize for the noise? It just is. Part of life, part of the world, and so is this.”

I love thunder. It’s untouchable but palpable, everything wild and pure that we can’t lasso under our will—much like death itself.

As the next days in home hospice unfolded, Mom fixated on my skin, touching it, complimenting it. Her food appetite, which used to be considerable, was all gone, and it seemed to transfer to skin hunger. She would pet my skin, and I would find her staring at it when I’d wear a sleeveless shirt, or when I checked on her one night straight out of my shower, dripping wet in a towel. Her attention startled me—until I realized just how rarely in my adult life I’d hugged my mother. Now, I guessed, it was time to appreciate what physical togetherness we had left.

Surprisingly, her humor was good. I had not really seen wit ever before from her, but now it came easily. It was like seeing her for the first time as the person who’d been lurking for decades under layers of hurts and resulting defenses.

One day as I returned home from the grocery store, I entered the back door, bags on each arm, and heard a howl emanating from both Mom and Eva. Alarmed, I dropped the bags on the back step and tore into the living room—where Mom and Eva were cackling at a drag queen on Jerry Springer who had lost her wig.

Though the cancer quickly destroyed her appetite, I knew Mom’s body still needed food, so I offered calories as long as she could endure eating. Since her longstanding dessert taboo was a moot point now, I brought her a pint of vanilla ice cream as a surprise. “Ooooooooooo,” she said as I dug a spoonful out and fed it to her. Her eyes lit up. “Good,” she said.

“More?”

“No,” she said. I waited, tipping the open carton toward her. “Well,” she said, “one more.”

After a few days at home, Mom and I moved into a professional hospice center as her needs increased. 


July 10, 2013: The last hours

From midnight of July 10, 2013, when Mom woke up in pain, until just after 3 am, I cuddled her, gave back scratches, told her I loved her repeatedly, let her touch me, put lip gloss on her cracked mouth, rested next to her in the bed, rubbed her arms and watched her fall asleep, her face relaxing as she escaped the pain. I felt okay leaving the hospice at roughly 3:20 am. I drove home.

I wanted to sleep. Instead, I had a sense of Mom being near me, her light bursting wide open. Rather than sleeping, I did what I seemed to have become best at doing: I cried. I knew what was coming.

I was determined to be present with my mother at her death. Jack thought it would be terrible for me to witness Mom’s death; he counseled me against it. No, I said—it might be terrible for him to witness a parent’s death, but we were different people with very different attitudes toward handling death. I’d already lived through missing the actual moment of my dad’s death, I reminded Jack, though I’d stayed by his side in the days before, and this time, I knew I was supposed to help my mother. Being present for her death was a lesson I was ready to learn.

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