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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July 10, 2013: The end at hospice

The morphine finally paid off shortly after 3 am. But getting there took some effort.

“What is this?” I touched Mom’s nightgown, which was soaked with sweat; so was her pillow. She was leeching out fluid at a rate I hadn’t seen in the two weeks since her terminal cancer diagnosis.

The hospice nurse and I replaced her gown and pillow with new, dry ones, shifted Mom onto her right side, and adjusted her covers. “Do you want to lose a blanket, Mom? Are you too warm?”

“No, I’m comfortable.”

“Feel better with a dry nightie on now?”

“Yes, much.”

I threw the drenched pillow into the closet. No sooner had I turned than she spoke. “Jennifer. I need to move. Get the tech. This hurts.” She pointed to her distended beach ball of a belly, through which the cancer pain had been ripping for most of the night. I could tell she was going to vomit. I grabbed tissues and caught it in time.

“Mom, I don’t think it’s the position. You’re going to hurt no matter what position we get you in. You need more morphine.” She nodded, and within a minute, a nurse efficiently shot a syringe into her mouth—far back, so that the bitter taste of the morphine went directly down the throat and could be followed with a sweet orange juice “chaser” to mask any aftertaste.

“The pain will reduce in a bit,” I told her. “Just hang in until the drugs hit.” She nodded and settled, one hand holding mine.

She kept spitting up fluid, but she continued to stare at me—intently, steadily, for about three hours. In that time, decades worth of miscommunication between us, of fights and resentments and incompatible coping styles, silently vanished. I didn’t know the person who was staring at me with a peacefulness and love that I’d never seen on her face before, but I knew this: She was the mother I had always wanted.

I never thought I would get that in this lifetime. I certainly never thought that Mom, dying, would suddenly give birth to a new reality between us.

I said, “Do you remember when I was little and would sneak into your bed for the night?”

She smiled and nodded.

I said, “Do you remember when I would wake you up and make you come sleep in my bed?”

Same reaction.

I said, “Nothing has to change.”

Despite the pain she was still feeling, she scooted over enough so that I could remain seated on the edge of the bed, but rest my upper half next to her, my shoulder touching hers. I immediately felt relaxation come off her body—a settling, a letting go.

For both of us.

July 1982: Montgomery County and beyond

There is a moment I’ll never forget: Mom’s foot on the gas, the station wagon’s engine roaring as she gunned it over the “shooty-shoots,” as she called small but steep hills. Where the Philly ‘burbs turned into farmlands, Mom knew a road with three shooty-shoots that came quickly in a row. “GO!” I yelled, and my mother hooted in response as the car flew over each hill, my stomach fluttering with each brief second of free fall.

I was eight. It was the last time Mom and I would understand each other for the next 31 years.

She was already middle-aged when she discovered she was pregnant with me—a nearly unbelievable surprise. My mother was born in the 1920s, and her views of mothers, daughters and their places in the world had been formed in an America that was gone forever.

Her penchant for fast driving notwithstanding, Mom, who grew ever more anxiety-prone and compulsive throughout my late childhood and adolescence as she began to encounter medical problems, never knew how to handle a daughter who wanted to take on the world headfirst. And I could never bear a mother who wanted me to placate it.

Dad understood. “You’re going to swim against the stream in your lifetime, my love,” he told me. That was fine with me, and I loved him for getting who I was—even as I found my mother’s endless worrying and what-ifs and worst-case scenarios more alienating by the year.

At 12, I was determined to go to work earning my own money as a house cleaner; she shot me down, appalled at the very idea, but I went anyhow. At 16, I dressed myself in the same clothes my peers wore to concerts; she told me I looked like a whore and did her damnedest to instill the sense of shame that she’d grown up with, which I simply didn’t possess and refused to internalize. As an adult building my legal career, I put together a strategy to take the bar in Florida so I’d have more options than Pennsylvania alone offered; she itemized all the ways that people with lupus, like me, shouldn’t set themselves up to fail with such grandiose, able-bodied dreams.

I trained myself to work around Mom’s limits, but I also trained myself to resent them—and her. Through all of it, I grasped that her no’s, her worries, were less about my well-being than her own. Yes, she wanted to protect me from the world; she was a “helicopter parent” years before the term caught on in women’s magazines. But too often, it seemed, that didn’t come from a desire to see me happy so much as from a desire to keep me close so I could help her be happy. She saw my drive for independence not as growing up, but as abandoning her; that tension pushed me farther and farther away from even liking her, even as, in adulthood, my husband and I dutifully cared for her after my father died.

I hated her possessiveness. I wanted her to love me for me, not for the stifling image of proper mother-daughterness she thought we ought to embody. And yet it was obvious to everyone but me: She did love me, ferociously. As my husband put it: “You two have a way of short-circuiting the other.” 

June 28, 2013: The beginning of the end

That day, I knew that Mom’s cold was more than a cold. Early in the morning darkness, she did too. “Jennifer,” she said. “I’m feeling awful. I keep coughing.”

I was sure it was pneumonia. “You’re going to the ER. We’re not waiting until tomorrow. This is moving too fast.”

Mom nodded, clearly exhausted, but able to walk on her own to change her clothing and to use the bathroom. I alerted my husband, Jack, who was sleeping soundly, and I grabbed a small towel; I have lupus, and I feared Mom had an infection that I, taking immunosuppressive therapy, could catch. I figured if I put her in the backseat of the car and had her cough into a towel, I might be safer. I have no idea if this idea was sound logic or the wishfulness of someone who desperately wants it all to work out.

I jogged to my car, drove around the block and parked as close as I could to the front door. Mom emerged, leaning heavily on Jack as they made their way to the car. She tried to ease herself into the backseat, but faltered: she lacked the energy to pull her feet up and in. I lifted her legs and positioned her. “Why aren’t I strong enough to lift my legs?” she asked.

I didn’t know. “We’ll fix it,” I said. That was my job: I would be the CEO of managing her illness—just as I had been for Dad’s, just as I was for my own.

I told Jack to go back to bed. I knew I’d need him rested for whatever came next.

At the ER, they imaged Mom’s chest, with the expectation of finding fluid consistent with pneumonia. The resulting x-ray showed fluid indeed—but not just in her lungs: all around them, too. The complicated picture called for the more sophisticated CT scan, which showed the truth that my mother’s flowing muumuus had concealed: a fast-growing tumor, believed to be originally ovarian, shaped like a dinner plate laying vertically in her abdomen but quickly blowing up.

No bronchitis. No pneumonia. All tumor fluid, enveloping her lungs. Cancer with metastasis to the bone and lymph nodes.

Shouldn’t she have been in agony for weeks already? Mom had shown no signs of pain; she’d mentioned her lack of appetite and seemed to be resting more during the day, but neither of those things were unusual for an 86-year-old. Just the day before, she’d been cleaning in the kitchen, finishing her beloved crossword puzzles and stitching a pair of Jack’s shorts without complaint or slowness.

I later learned from her primary care doctor that Mom had been offered a workup to detect cancer a few weeks earlier. Mom had refused.

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