Jennifer Sanfilippo's life changed in many ways, both obvious and intangible, after her husband Jim Barbero died in July 2020.
For one thing, her deep need to find meaning and answers in the months that followed Barbero's death led Sanfilippo to a new calling. After building a career as a political strategist and financial industry lobbyist, she made a sharp pivot into hospice volunteering and, eventually, becoming certified as an end-of-life doula.
"I'm tired of using my time and talents to help people get ahead in an arena that is removed from what's really important in life," Sanfilippo said of her original career path. She feels she is honoring her late husband and their two sons, Giacomo and Gianni, with her new chosen field.
"To do the best work I can do for people who really need it, for something that really matters, especially in this time that we're living in, we're in so many places, there seems to be a dearth of compassion," she said.
Barbero's diagnosis in January 2020 of a rare and aggressive form of leukemia came as a shock to the family. Jim's subsequent hospitalization, chemotherapy treatments, bone marrow transplant, and his death that July at age 56 played out at a dizzying pace, just as a global pandemic was rocking the world.
Sanfilippo did her best to oversee Jim's care, racing from their South Wedge home to the hospital and back again. She was sleep deprived and overwhelmed.
"Part of what I was carrying in my trauma was this idea that what he was going through was my fault and I, in some way, could have done better and had controlled it or prevented it." she explained.
It wasn't until she underwent her own hospice care training that Sanfilippo understood that a person in the final stages of death can become restless and agitated. Jim was hallucinating and yelling in Italian.
In her book about the last six months of Jim's life, "Our Last Walk Home: Love, Cancer, and the Agony of Letting Go," she wrote about how members of his medical team often seemed uncomfortable with the emotions surrounding terminal illness. Sometimes, she said, they made clumsy attempts to say things to comfort her.
Now that she's more educated in end-of-life transitions, Sanfilippo is no longer surprised by this.
"I think that the emotional weight around the family is really too much for any one person to bear," she said. "And I don't think it's part of their training."
She now realizes doctors, like anyone else, need a way to process and discuss their own fears and anxieties around death.
Sanfilippo has been trying to fulfill that need for people by hosting "death cafes" in public libraries around Rochester. It quickly became apparent how great that need was. People from as far away as Olean and Dansville came to participate in the small forums.
To create the emotional space that's conducive to sharing, the gatherings are small, with no more than 10 to 15 people. Sanfilippo moderates each session, but she is sometimes surprised by how little prompting people actually need to open up. One such instance was in a group of young college students.
"Nobody had ever asked them about their grief or loss or what that meant to them, and so they were just pouring out all these questions and thoughts they had about either losing a loved one or a neighbor, losing their father or their animals," Sanfilippo recalled. "It was really beautiful."
On Friday, Sanfilippo is hosting what she believes to be Rochester's first end-of-life symposium. This will be much larger and more structured than a death café. Various experts will lead breakout sessions on funerals, dying with dignity in the LGBTQ+ community, palliative care, and integrative medicine.
The symposium, which is being held at First Unitarian Church of Rochester, is already sold out. But Sanfilippo plans to organize more in the future, perhaps a full-day event with livestream capabilities.
Talking about death and dying probably won't ease a survivor's grief, Sanfilippo said, but she believes it may help reduce their trauma. And the process doesn't have to be heavy or somber.
"If you can talk about death, it sort of helps you really understand what you want out of your life, so they become very joyful conversations."
Jennifer Sanfilippo will discuss her writing process, experience with the healthcare system during the COVID-19 pandemic, and career transition from lobbyist to death educator, from 2-4 p.m. Nov. 10 at the Monroe Branch Library, 809 Monroe Ave., and 7-8 p.m. Nov. 14 at Writers and Books, 740 University Ave.
