Thoughts on Caregiving
Below is my essay on caregiving that was published in Next Avenue on February 9. Below is the photo they used. Love, Nancy
February 9, 2023
When I visited my friend, Laura, at Mount Sinai Hospital in New York, where she had been admitted with a blood clot in her leg, I was relieved her partner, Paul, was sitting at her bedside. That morning, Paul responded "Yes, great" within ten minutes to my email, asking if I could visit mid-to-late afternoon.
In 2016, Laura was diagnosed with ovarian cancer. It went into remission until 2019 when it metastasized. Then she began a rigorous course of chemotherapy. This last year has been hellish with long recoveries after her chemo and many side effects. Now lying at the edge of her hospital bed, opening and closing her eyes, Laura looked so small and sick, more unlike herself than my friend Sandy had at NYU Hospital a month before she died. Upon peering in and seeing Sandy from the hall, I thought I had the wrong room and initially continued walking.
Paul stood up when I appeared. "There you are. Good." Looking and sounding upbeat, he put on his coat and told Laura he'd visit the next day, moving closer to kiss her good-bye.
"Wait," I said. "Can you show me where the ladies' room is?" I knew where it was. I saw it when I got off the elevator, but I wanted to talk to Paul. I followed him out.
"What time did you get here today?" "9:30." "Six hours. You've been here a long time." "It's more like six years." "This must be so hard for you." I hugged him. "You're doing a great job." "Thank you for saying that."
It was the first time I did. Laura and I, open and safe with each other about our men, work, families, illnesses, anxieties and all else, could not have been closer. I treasured our 40-year friendship. During my calls and regular visits, I was empathetic to her revelations about Paul's irritability and unwillingness or inability to sometimes show up emotionally, which included going to his relatives' house on weekends, and not accompanying her to chemo treatments in recent months.
Walking back into her hospital room now, I was afraid to face her alone. I could truly appreciate what Paul faced day in and day out. During my childhood, my mother's mental illness required the family's attention, particularly my father's. Our regular evening activity — making chocolate milkshakes for me—changed into his making milkshakes for Mom first, with a raw egg because she had gotten too thin.
Sometimes at 9 or 10 p.m. on weeknights, she would ask him to drive her to a coffee shop because she was restless. We lived in Buffalo, New York. He drove her on winter nights, getting the car out of the garage after a snowfall before our driveway was shoveled. "This is what Mommy wants," he told me when I asked why he did it.
He also drove her to and from her psychiatrist every Saturday morning.
"Mommy talks more to him than to me," I said while eating breakfast at Howard Johnson's during a session.
"Mommy's got big problems," Daddy said.
Problems that involved coming first and neglecting me. I was sympathetic to my father for all he accepted and did. People vary in their caregiving. There is a huge range. My cousin had colon cancer. Her husband accompanied her to every treatment, did all the errands, and cared for her at home.
My neighbor with pancreatic cancer had chemotherapy last summer and fall, while his wife stayed out at their beach house and did not accompany him to one session. My friend Sandy's husband got indignant about doing extra chores. He complained that her illness was hard on him — him – and he never accompanied her to her chemo treatments.
"Half the partners go, half don't," Sandy told me. She divorced him.
As I sat at Laura's bedside, she said the hospital staff did not like her. "I'm sure it's not personal," I said. "Maybe they aren't very warm."
She went on, "Paul hates that I'm so sick."
"We all do. Everyone who loves you."
"He can't take it. He's not always nice to me."
I held her hand. "Maybe it gets to him and it's hard for him to be nice all the time." A sick partner. All the time. Ouch!
I believe Paul loved Laura, got cranky as she often told me, because she did not help keep their apartment neat or do much cooking; she said he threatened to move out. I believe, too, that no one is a saint every minute, that we all lose it, and that Laura's illness terrified them both.
Laura started to cry. "I can't cry with Paul."
"Paul's not here. You can cry with me." Another friend, Bess, arrived. Laura cried louder. "It's good she can do that with us," said Bess.
Letting it out and being oneself is often easier with female friends than with male partners. Bess said that Laura often talked about Paul's unavailability to her, too. We never know what goes on behind closed doors.
A caregiver faces a mighty challenge. The patient has been given her/his marching orders. The caregiver has much to handle and must keep figuring it out.
In her 80s, my mother had two serious falls. The first time she hit her head, creating a hole. There was bleeding in the brain. I flew down to Florida. The young blonde surgeon, who looked like a linebacker, wanted to operate. We took a wait and see approach. My father, a calm, reassuring presence with doctors and Mom, wept in the car and at home. My mother healed on her own.
On her second fall, she fractured her pelvis, was hospitalized and then in a rehab unit of an assisted living facility among patients in their 70s and older, mostly without partners and very few visitors.
My father and I visited daily. My mother's room, far from the entrance, was too long a walk for Dad. An aide or I pushed him in a wheelchair. He looked so sad. I felt deeply for him. I kept rubbing his shoulder. Upon seeing my mother, he perked up, smiling and speaking to her with genuine cheer.
Love. Strength of character. A backbone. The right thing to do. They lived within my father. He faced the music as he had decades earlier with Mom's mental struggles. He also enjoyed his own mind. In between caregiving, he read voraciously, played out bridge hands and did puzzles.
Neither my husband nor I have needed to be each other's caregiver for life-threatening illnesses. I believe I chose a man who can and would show up. If I become my husband's caretaker, I hope that my frustrations and fears come out on the page and with my friends. I like to think I learned more than a little something from my role model. My dad.