Hospice volunteers make every moment count

Dorothy East enjoys hearing people's stories during her work as a hospice volunteer. Photo by Janice Steinhagen.

Ilona Oberman saw hospice care in action during her career as a registered nurse. But its impact really hit home when her husband, Jay, a psychiatrist, was dying of cancer. “Jay was very clear about the fact that he wanted hospice involved,” she said. “He invited hospice into our lives three or four months before he died. They listened to him and didn’t try to impose anything.” Jay Oberman was able to die at home in his own bed, unburdened by excessive medications, just as he had wished.

Her own experience spurred Oberman to volunteer with the Norwich-based Center for Hospice Care Southeast Connecticut, which offers resources for medical, emotional and spiritual care for people with life-limiting illnesses, and support for their loved ones before and after death. The “wonderful people” she meets keep her coming back.

“It’s a common story for our volunteers to have experience with end-of-life care and want to get involved,” said President and CEO Carol Mahier. The agency has more than 100 trained volunteers whose contributions to the patients’ care run the gamut from respite for caregivers to bereavement support.

Dorothy East of Quaker Hill is another CHC Southeast Connecticut volunteer. A retired high school guidance counselor, she saw the program’s impact when her uncle, a nursing home resident, was given a terminal prognosis. Hospice caregivers helped ease the passage for him. “They came and they were angels,” she said. “They made him so comfortable. They were really on top of his medications. I said, ‘I want to be with people like that.’”

East and Oberman both serve as patient care volunteers, making regular visits to hospice patients for emotional support, respite for caregivers and help with errands. Their tasks can be as varied as letter-writing, picking up medical equipment, watching television with patients or helping with scrapbooks – whatever the patient needs that day.

The agency, known until last week as Hospice Southeastern Connecticut, has undergone a rebranding process to emphasize its role as the only community-based hospice program in the region, Mahier said. The focus in hospice care is providing the patient with dignity, control, choices and the chance to attain goals, she said.

Both volunteers emphatically refuted the common misconception that hospice care is reserved only for the very end of life. While the criteria defines patients as eligible if they have a prognosis of six months or less, Oberman said she worked with one patient over the course of a full year, helping him write letters to loved ones to be delivered after his death. “It’s not just about lying in a bed and being frightened,” she said. “We laughed, we joked. He was an amazing, amazing fellow.”

“The thing I like best [about volunteering] is how I get to know patients and their families,” said East. She’s worked with patients of all ages, from a 20-year-old young woman with bone cancer to a veteran who’d been a sniper in World War II. “Some patients you never have a conversation with; some tell you the story of their life,” she said. Facing impending death can become “an open-hearted moment for a lot of people.” 

“I don’t see going out to patients as a job,” Oberman said. “I don’t go to visit a patient with a plan in mind. I try to listen to them and see what they need. I enjoy being able to… be part of somebody’s life, even for just a minute.” Oberman recalls one patient, nearly 90 years old, whom she began visiting and for whom she was asked to read books. But it didn’t take much reading to see that something was amiss. “I asked her, ‘Are you enjoying this?’ and she said, ‘No. This is a terrible idea.’”

After some gentle probing, she learned that the woman was blind. Oberman suggested that for her next visit, she bring along the "New York Times" week in review and its book review section, with a wide variety of topics. That turned things around. “We would pick and choose” what to read, she said. “She would say to me, ‘This is the best part of the week for me.’”

East said that she gains as much, or more, from her work in hospice as do her patients and families. “A lot of our families really know us. They’re happy to see us,” she said. “It sounds really corny, but it’s a gift for people to allow you into their lives in this way.”

Society’s attitude toward death often means that a terminal prognosis catches people off guard, said East. “People say, ‘I can’t believe I’m dying,’ as if it were surprising, which it is in our culture,” she said. It’s the patient’s approach to the dwindling time that matters most, she said. “I tell people, ‘You know, you don’t have to die. We’ll let you live as long as you want.’”

“Every moment matters. Life is a glass half full, not half empty,” Mahier said. “If [patients] are able to understand what their choices are, they have the chance to live well” in whatever time they have left.

Mahier said that in addition to patient visits and respite care, CHC Southeast Connecticut welcomes volunteer specialty therapists to offer their services in massage, reflexology, pet therapy and other avenues. In addition, clerical support at the agency’s 227 Dunham St. office is welcome. For more information, call 860-848-5699 or e-mail vol@hospicesect.org.