Death as my Colleague, Final Acts, Death, Dying, and the Choices We Make, Rutgers University Press, 2010
My mother was diagnosed with terminal metastatic pancreatic cancer two months prior to her demise. The moment her internist palpated her liver edge during an abdominal exam I knew the prognosis. The enlarged liver meant the disease had already spread.
We had gone to the doctor because my normally indefatigable mother felt tired. She had slowed down at home, slept more, and ate less. Before this, at 79 years of age, she exuded youthful energy, bustling around the house taking care of my three sons, playing with them in the yard, and walking the neighborhood daily. After she fired three different services that helped with the house cleaning, she informed me that I should pay her as she did a better job anyway. Fatigue was not in her vocabulary.
As we sat in that exam room, I could see the future of her rapid decline. I was a physician but a daughter too, so we went through a CT-guided biopsy that confirmed the hopelessness of widespread pancreatic cancer.
Standing in our living room, light streaming through the sky lights, I told my ever-optimistic mother the pathology results. She howled like a wounded animal and collapsed into my arms. I held her and stroked her head, wanting to be with her. She grieved then but never again cried in sorrow.
We made the decision in tandem: no chemotherapy, radiation, surgery, or further diagnostic testing. My mother and I had previously planned a trip for her upcoming 80th birthday, a cruise to Alaska, just the two of us. I asked her if she wanted to go somewhere else sooner with me; I predicted she had less than two months left.
“I love you, honey, but I want to be with all my family––Marc, Joshie, Dave, and Marty,” she said. Her grandsons were aged nine, seven, and two years. She was a third parent to them, living with us since the oldest was born. They had infused her retirement with purpose and joy.
We went on a family cruise––all six of us––savoring the time together. My mother accompanied us every evening to the elegant dining hall though she ate very little. We sunbathed on the deck while the kids went to ship camp. We played cards and joined in trivia contests. In the evenings after dinner, sometimes we stopped to hear live music and she took a twirl on the dance floor with each of her grandsons.
One shore excursion led us to a nude beach. The boys played in the sand. Marc went to get drinks from the bar. I sat down on a blanket with Mom. After a few minutes she sat up very straight. She had noticed the naked people.
“Is this okay, Mom?” I said, nervous that it would make her uncomfortable.
Her eyes scanned the beach and came to rest on one gentleman walking at the water’s edge.
“I don’t know what he has to strut about,” she said.
I laughed, hard, giddy with the comment from a woman who I presumed had only seen one adult male naked, my father.
By the afternoon, she was playing the steel drum with the musicians, all of them clothed.
In private, I cried, afraid that each moment might be the last to share with Mom.
We returned from our trip on a Saturday. Mom and I drove to the grocery store to restock the family refrigerator. She pushed the cart and leaned on it for support as we strolled up and down each aisle, having done it hundreds of times before, and knowing this would be the concluding ritual.
At home, I tucked my tired mother into bed, where she slept peacefully. The next day, she awoke with a 104-degree fever, in and out of consciousness. I was the frightened daughter of a dying patient. Should I call an ambulance or drive her to the hospital? Did she have a blockage or pneumonia that could be treated? Could I save her for a few days or weeks?
I spoke with Mom’s doctor, and she explained (in that hopeful manner only oncologists can express) that this was a treatable episode. A surgeon could drain an obstructed bile duct. A hospitalist could treat Mom with intravenous antibiotics. The hospice representative was due to arrive the next day.
I hung up the phone and stared at the receiver. My mind seized up with the click of the disconnected telephone. I sat on the stair landing, my legs curled up to my chest. As a physician, I knew the bleak and painful consequences of sepsis, whatever its source. As a daughter, my mother was dying. Shakily I went to her room, the portable phone still cradled in my hands.
“Mom,” I whispered as I brushed the damp hair off her forehead. She opened her glassy eyes, and a smile began at the corners of her dried lips.
“My princess,” she murmured.
I explained our choices, unable to consider this weighty decision alone––the scared little girl, needing her to be my mommy.
“I want to stay here, Mary. Not die in the hospital with all those tubes and machines,” she said with great effort. I cried openly then and put my head on her chest. Her thin hand weakly gripped my shoulder. “I’ll always be right here.”
That painful night passed, alleviating my feeling that my decision would kill her quickly. Death’s presence hovered in the house, waiting. My mother’s body and spirit rallied––the fever broke. She telephoned friends.
After asking about their welfare, she said unhesitatingly, “I’m dying and just wanted to talk to you one last time.”
Some sounded shocked and were unable to acknowledge this raw honesty. Others offered condolences, shared memories, and said farewell. Close friends came to visit and said good-bye in person.
One Friday I was inspired and kept the boys home from school. She instructed me to retrieve some packages from her closet, presents she bought at every opportunity and doled out to her grandsons throughout the year. Joshua, David, and Marty gathered around her bed as she gave them parting gifts: sticker books, action figures, dream catchers. They opened wrappings and oohed and ahhed with each discovery. Paper and boxes littered the floor like at a birthday celebration. They spent the whole day with her. Joshua read her a story. David fed her pudding. Marty took a nap cuddled next to her. I felt restful that night.
Every day she wanted a bath. Marc and I carried her to the tub filled with warm sudsy water and sponged her down. It wasn’t difficult for us; she weighed less than 90 pounds by then. Skin hung from her bony frame, bright yellow from the cancer that had consumed her liver. Her abdomen protruded, swollen and painful. The water soothed her as we poured it over her chest and back. She sighed with joy.
One day, she did not want to get out of bed for her daily wash.
“Not today,” she mumbled.
I tried turning her to change the damp sheets. She moaned in agony.
“Okay, Mom, okay,” I replied as I rolled her slowly to her back. “I’m sorry.”
Those two words carried more than an apology for the physical pain I caused her. I’m sorry you are dying. I’m sorry you won’t get to see your grandsons become Bar Mitzvah. I’m sorry you’ll never again go to the Knights of Columbus dances you loved so much or eat your nightly banana with Cheerios or play pinochle with me on a Saturday afternoon. I’m sorry I won’t hear “little princess” anymore. I’m sorry your life has to end like this, that it has to end at all.
Because we had chosen to avoid interventional therapy––hospitalization, treatment, and an invasive tube to drain toxic fluid from a blocked system that would inevitably clog again––there could be no feeding tubes or intravenous fluids. When she refused to eat solid food, we fed her small spoonfuls of strained squash or vanilla ice cream. Her intake was minimal. She did not have the stamina for more than a few mouthfuls. Then she stopped drinking, taking only sips of flavored water through a straw and, at the end, only allowing us to wet her lips.
The hardest part was her worsening pain despite hospice providing high dose medication. My heart broke anew when each turn of her body caused her agony.
The night of the day she refused a bath, one day after the fete with the boys, Marc woke me up as I fitfully slept. We had gotten into the rhythm of taking turns sleeping with my mother. We didn’t want her to be alone at the final breath.
“Mary, I think Mom is going to die tonight,” he quietly said. “She has the death rattle.”
I gathered our sons and went to her room. I lay next to her, two boys on the other side of her, the third on a child’s sofa on the floor, Marc next to him. Mom lay on her back, ashen colored even in her jaundiced luminescence, breathing erratically through cracked lips, encrusted secretions at the corners of her mouth and eyes, pain still visible in facial grimaces.
I hugged her gently and the boys did too. They easily fell back to sleep. Despite knowing this was the end, I drifted off as well.
I awoke with a start. Something was wrong. I no longer heard her troubled breathing in my ear.
She was gone. I felt for a pulse that I knew wasn’t there on skin still warm to the touch. I put my ear to her chest, my cheek to her lips and heard no heartbeat, felt no air movement. I pronounced her dead.
“Mom just died,” I said. Everyone had awakened with my rustling. We cried, even Marty joined. We took turns having a final visitation with her. Each of us, including the toddler, placed a single rose, her favorite flower, on her chest and spent a few minutes with her. The red blooms bought a few days earlier, before her coma, contrasted with the pale nightgown and her yellow skin. We said good-bye.
The next day I got a package in the mail, a vase with 24 synthetic red roses arranged with baby’s breath and fern in a permanent bouquet. Esther had ordered them 10 days earlier. My mother loved roses and used every special occasion to visit the florist and buy a bouquet: all the boys’ birthdays, Marc and my anniversary, friends visiting for the weekend, a good report from school. Marc had told her it was excessive. The silk flowers were beautiful. They seemed to say, “Here take these for all those times I would have bought you flowers.” It was my mother’s final gift.
Seventy-nine years of living, two months of dying. My family acknowledged Death and invited him into our home. He sat in a corner, patient and polite. We sat with him, Mom with a conspiratorial look from time to time. They had a mutual agreement––she said her farewells and prepared her only child for the hardest thing to face in life, and Death had waited.