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Hospice Girl Friday | ‘Just Being There’


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.

I’ve been playing clarinet in a community band for 20 years. We rehearse Wednesday evenings for two hours in a local high school and perform in retirement homes and parks every other month. There are no auditions required and no age limits, so we have members who are just out of college and people who recently retired and started playing their instruments after a 50-year career hiatus.

When I first joined the band I was working full-time and I rushed to get to rehearsal every week. Other than the rest of the clarinet section and a flute-playing friend I had recruited, I didn’t know anyone else’s name. There wasn’t time to socialize during rehearsal, and I didn’t stick around afterward because I needed to get up early for work the following day.

That all changed when I stopped working and could linger after rehearsal to chat with some of the other musicians. I learned that a clarinet player who sat next to me for more than 10 years was a former nuclear physicist, and one of the trombonists—Frank—once commanded a submarine and was married for more than 40 years to Betty, a French horn player also in the band.

When I got married I encouraged my husband Jim to dust off his trumpet and join the band, which he did in the fall of 2011. Jim introduced himself at his first rehearsal (a band ritual) and announced that he was married to me. This seemed to delight Frank so much that he made his way over to Jim that evening to share stories about being happily married to another musician. Often Frank, Betty, Jim, and I would walk out to our cars together after rehearsal chatting about superficial stuff like the weather, a recent concert we played, or our new conductor’s sense of humor.

Last summer Frank was diagnosed with inoperable brain cancer. He underwent chemotherapy and for several months and it seemed to keep the cancer at bay, but earlier this year we watched Frank get weaker and thinner. He still came to band, but talking was difficult for him, and then impossible as the cancer affected his ability to speak. At rehearsal about a month ago, I looked over and saw Frank slumped in his chair with his trombone across his lap while the rest of his section stood and played the final ‘big brass’ strain of Sousa’s “Stars and Stripes Forever.” When Jim and I were leaving that evening we noticed Frank shuffling behind a walker with one band member carrying Frank’s trombone and Betty guiding him to their car.

I know from my hospice volunteering and from spending time with my friend Leslie at the end of her life that being a caregiver can be physically and emotionally draining, so when I got home that night I sent an email to Betty saying just that. I offered to come over and stay with Frank while she ran errands or took a walk. I told her I knew we weren’t close friends, but we were part of the same band family and I hoped she would take me up on my offer. To make it easier for her to accept, I suggested a few specific dates and was delighted when she replied to my email to lock in a time. In her note she told me she was grateful for the chance to go to the mall in order to have Frank’s cell phone transferred over to her, a seemingly mundane task that she hadn’t been able to do because Frank was no longer able to walk on his own.

Jim wanted to come with me. I told him that, according to Betty, Frank would likely be sleeping when we got there since we would arrive just after a visit from his hospice nurse. When we arrived, Frank was sitting on their sofa with the day’s newspaper draped in his lap. He gave us a weak smile when we greeted him, and then a gauze curtain dropped behind his eyes as he tried and failed to stay focused on us. As soon as Betty left, he nodded off and slept until she returned two hours later. I gave her a hug when we said goodbye, and she fought back tears as she thanked us for coming over.

That evening I told Jim I was glad he came with me. I liked having him there and I believe Frank did too. Jim said, “I know you’re around people like Frank every week at the hospice, but I was kind of scared. I’m not used to being with people who are sick like that, and I don’t know what to do or say.”

“I’ll tell you a secret,” I said. “I’m scared too. Every time I go into a patient’s room I get nervous. And today, for a split second as we walked into Frank and Betty’s house, I felt that old familiar flutter of fear that I am not qualified to be around someone who is terminally ill. But I’ve learned that simply showing up and saying ‘I am here with you’ is all that a patient or their loved one needs to know they are not going through this horrible thing alone. You did that today for Frank and Betty.”

“Wow,” he said, “I never thought about it that way.”

Frank passed away two weeks after our visit, and Betty came to band rehearsal the following Wednesday. During our break I went over and sat quietly next to her as people stopped to chat and pass along their condolences. I wanted Betty to know that she was not alone in that moment, even though she was surrounded by our bandmates. As I left to go back to my seat, I offered my help again and this time she said, “Maybe in a couple of weeks we could just get together and talk.”
I’ll be here for her whenever she’s ready.

Note: Names have been changed to protect privacy.

Previous post: Learning How to Listen Next post: Coming Home to Say Goodbye

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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