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Mindful : February 2014
44 mindful February 2014 education “Have you done the Jumble yet today, Wendy?” Kayli O’Keefe has just bounced into Shepherd Home, a t wo-bed hospice-care home in Rochester, New York. The energy of the 18-yea r-old hood- ie-clad teenager seems unexpected in a place where people go to die. She wants to know if someone has sat with Wendy yet so she could do her daily word puzzle. Wendy, 52, is a former speech pathologist and college professor. But she ca n’t a nswer Kayli. She has frontal lobe syndrome, and it has rendered her almost nonverbal. She can utter the odd word or the odd letter f rom the puzzle, but mostly she hums repetitively, almost hypnotically, a nd communicates by holding her pink-polished thumbnail up or down. It’s the cruelest of ironies for someone in Wen- dy’s profession. She will also die from it, which is why she’s living at Shepherd Home receiving palliative care. Her disease has progressed so quickly that no one would recognize her from the photo of “healthy Wendy” on the whiteboard in her bedroom. It shows a vibrant woman whose smile dominates the frame. Kayli moves closer to Wendy, who is doubled over by a bent neck, her eyes nearly closed, her face in an involuntar y half-grimace. Kayli holds the newspa- per and tells her what’s in the Jumble today. “The letters are R I N O Y. What do you think, Wendy?” Wendy is having a slow afternoon. Sometimes she can quickly blurt out the whole word, but this time she says only the first letter. No one else in the room can figure it out, but together Wendy and Kayli eventually do: IRONY. Kayli is a volunteer at the hospice, but she didn’t come to this work in the usual way. She is here as pa rt of a senior-yea r class offered at The Ha rley School, not far from the Shepherd Home. It’s a unique program Bob Kane started 10 years ago at the private school. Kane is a beloved teacher whose graciousness and passion have attracted kids to the class, which is known in the syllabus simply as “hospice.” In the 2012-2013 school yea r, 36 of the school’s 44 seniors took it, up from nine when the course began in 2002. It’s popular. And at this critical time in their lives, when they’re about to go out into the wider world, it can alter their perspective about what ’s importa nt in life. On the first day of class in September, the stu- dents are timid and curious, unsure about what to expect. Jocks, preps, nerds—the usual high school labels fail to stick in the face of the experience of death. “They all come in afraid,” Kane says. “They come in wondering about everyone a round the table. But the course calls to them because it’s real and it’s authentic. It’s extreme caregiving. “ We sit around the table the first day and I ask them some questions,” he says. “ Why are you here? What drew you in? And then the big one: What is your experience with death—any kind of death, pet, loved one, family member, f riend? “That’s when the breakdowns sta rt to happen,” says Kane. “ It just takes one trigger—one person who begins to talk and their voice breaks. Once one person starts to go, they all step up and comfort each other. And it progresses from there.” Alejandra Biaggi, 18, recalls the first day: “Some of us were tearing up,” she says. “My grandfather died last summer, and talking about it was such a release. Nowadays death is so taboo.” But for stu- dents who take Kane’s class, it’s a subject they’re all able to talk about now. “Death is just a part of life,” she says. After the experience of opening up and com- ing together, Kane begins the hands-on training needed for hospice care: positioning residents in bed to make them comfortable (as part of the hospice philosophy, they don’t call them patients); cha ng ing the bed while the resident is in it; sponge-bathing, showering, feeding, hydrating, and applying lotion to delicate skin. At that point, the students begin to visit one of Previous page: Sofoniyas Worku, left, an 18-year-old student watches while hospice resident Joan Flack rests. A native of Ethiopia, Sofoniyas has experienced death before: he lost his aunt and a friend to malaria. Joan died on May 4, 2013. Below: The founder and teacher of The Harley School’s hospice class, Bob Kane. He says of the high school seniors who sign up, “They all come in afraid. They come in wondering about everyone around the table. But the course calls to them because it’s real and it’s authentic. It’s extreme caregiving.”