Hospice Girl Friday | ‘The Power of Listening’

It can be therapeutic for relatives of hospice patients to reminisce, so they can lock-in memories of better, healthier times.

Two women riding bicycles.

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Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

There was a woman in the hospice’s communal living room when I came in to start my shift. She was wearing navy blue sweatpants, a pale gray t-shirt and slippers. She was slumped on the sofa, facing the television but staring at something much further away. After I put my bags down under the volunteer desk I checked the list of current patients and then asked one of the nurses about the woman on the sofa.

“Her sister is in room three,” the nurse replied. “Fifty-eight years old. Colon cancer. They’ve both been here since yesterday morning.”

Once I settled in, I walked over to the woman and introduced myself. She told me her name was Mary.
“I understand you’re Ann Simpson’s sister,” I said as I perched myself on an arm of the chair next to her, careful not to assume she wanted company.

“I am,” she said as she sat up and straightened out her t-shirt, which had bunched up against the sofa behind her. “She’s my baby sister, and I’ve been taking care of her the whole time she’s been sick, which feels like forever. I’ve gone to every doctor’s appointment, every treatment, and now we’re here.” She swept her eyes around open space and then slowly shook her head.

“How wonderful you’re able to be with her,” I said, acknowledging that caregivers need to know someone cares about them and the effort they make. Mary looked back up at me and nodded. “Yes,” she said. Her mouth hung open like she was going to say more, but she didn’t.

“The nurse said Ann is resting comfortably,” I said. “How are you holding up?”

“I’m fine,” Mary said. “Tired. It’s been a long six months since Ann was diagnosed. And tomorrow is my 60th birthday. I’d hate for her to die on my birthday, but if she needs to go, she needs to go. She’s been through enough.”

Since she answered more than my question, I slid down into the chair and waited for her to continue.

“Ann’s husband is coming over later this morning so I can go home and get some stuff done,” Mary said. “Then I’ll be back to spend the night again.”

I wondered if she wanted to talk some more, so I searched around for a question that would open up more of Ann’s story. “What kind of work did Ann do?” I asked.

“She was a school teacher,” Mary said. “Fifth grade. She loved her kids and her kids loved her. Never had children of her own, so they were her family.” I nodded slowly as she spoke. She continued, staring at a space somewhere between the two of us. The words spilled out as though they had been backed up for a while.

“I work for the power company. My manager has been very understanding and has given me a lot of flexibility so I can take care of Ann.”

We sat and chatted like that for about fifteen minutes. I would have happily stayed there for my entire shift, but Mary said she wanted to check on Ann. I stood with her and told her I would stop by in a little while to see if she needed anything. Maybe I could get her to tell me more about her sister, I thought.

I have always enjoyed learning people’s backstories, but once I became a hospice volunteer I made it a point to learn as much about the patients from their loved ones as I could. Talking about people who are dying helps us to lock in memories of who they were–and who we were–when everyone was healthy and living their everyday lives. I learned this from the experience I had with my friend Leslie, who died in 2006.

I will always cherish the time I spent with Leslie during the four years she fought breast cancer, and it was my honor to be with her at the very end of her life. But when I talk about her now I have to work hard to replace the picture of her as she lay on her death bed with one of the gazillion (she loved to exaggerate so Leslie, this one’s for you) mental images I have of who she was during the nearly 30 years that we were friends. Maybe we’re programmed to more easily recall extraordinary moments, such as the birth or death of a loved one, but I think it’s just as important to remember the string of ordinary images and moments that tell the whole story of how we lived. I want that for myself, and I want that for the people I meet in the hospice.

I made my rounds later in my shift, and when I walked into room three Mary was sitting in an armchair next to Ann’s bed and holding her hand. Ann seemed to be sleeping comfortably, but the blanket covering her moved only slightly as she took shallow, infrequent breaths, indicating that she was nearing the end. Mary watched me as I studied her sister. I wondered if it would help Mary to talk more about Ann, so I asked, “Were the two of you close growing up?”

And with that question, Mary took me back to their childhood (Ann taught Mary how to ride a bike), their weddings (they were each other’s maid of honor) and their families (they’ve lived on the same street for 25 years). Mary also told me she always thought Ann was the prettier one, and she said that the two of them took care of their mother together, who died from Alzheimer’s just last year.

I stayed with Mary and Ann until my shift ended, grateful for the picture Mary drew of the ordinary moments they shared throughout their lives. I hope talking about Ann with me will help Mary bring those memories forward every time she thinks about her beloved sister.

Previous post: Coming Home to Say Goodbye Next post: Survivor’s Guilt

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

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