In a given week at the height of the AIDS crisis in San Francisco, Frank Ostaseski, the founding director of the Zen Hospice Project, would help as many as 30 people through their final hours. At a recent conference, Ostaseski recalled how he metabolized his grief during that span.
Meditation helped him cope, as did volunteering to hold newborns at a nearby maternity ward. He tried a chiropractor. “I’d walk in his office and he’d say, ‘Where should we touch today, Frank?’ And I’d say, ‘Oh, here, just on my shoulder.’ And he’d put his hand on my shoulder, and I’d just weep for about an hour. And then I’d get up and I’d say, ‘I’ll see you next week.’”
At around this time, he observed a family scene perhaps best characterized as impossible, but here goes.
Ostaseski uses pseudonyms to describe the family: a middle-aged man named Sam, his wife, Agnes, and their son, Paul. They lived in a small house in San Francisco’s Bernal Heights neighborhood at a time when the area pulsed with blue-collar workers like Sam, whose burned, scarred hands bore witness to a career in a foundry.
Paul was in his 20s, with wavy black hair and a job as a bank clerk.
“You know how you go into a room and there are people who you don’t notice?” Ostaseski said. “Paul was one of those people.”
Some would consider this a slight. To Paul, the gay son of a man who openly scorned homosexuals, it might have been a blessing.
The HIV virus found him, though, and when his condition progressed to AIDS and he could no longer support himself, and when all the friends who might have cared for him had died, he called his parents. He told his father about being gay, and about his diagnosis, and he asked to come back home. Sam said nothing, and hung up the phone.
At the time, AIDS was devastating not only the gay community but other groups as well, including people with hemophilia, who commonly needed infusions of a medication that was derived from donated blood.
People like Sam, who, in the months after he hung up on his son, received an HIV-positive infusion. He swore his wife to secrecy.
Ostaseski remembers Agnes as a woman of quiet determination who smoked Camels and kept the pack tucked into the pocket of her short floral apron. It’s tempting to try and imagine her at the moment she fully comprehended the minefield she was about to traverse with both men on her shoulders, while also carrying the grief of a wife and a mother.
She stood out to Ostaseski. He trains those who care for the dying, and is interested in the role that family caregivers like Agnes play in the health care setting — how ill-equipped they can sometimes be, and how our culture and medical system might remedy this shortcoming.
He’s also interested in helping prospective caregivers accept the notion that they can benefit from easing someone through their final days.
It’s not that caregivers should happily embrace death. “But keeping death at our fingertips reminds us not to hold on too tightly,” Ostaseski said. “Maybe we take ourselves and our ideas a little less seriously.”
Caregivers who faithfully serve the dying can also help them come to terms with what’s most essential in life.
As for what is essential: “For most of the folks I’ve worked with,” Ostaseski said, “it comes down to two questions: ‘Am I loved?’ And ‘Did I love well?’”
Ostaseski said he is not sure what sustained Agnes. He only met her once, at the urging of a social worker who worried that she might not be able to withstand the strain of 24-hour care for two people close to death.
She made him tea and led him to a small room lit with an overhead light and a sour smell and sunlight from a single window, filtered through curtains. Father and son lay in single beds separated by a low table that was littered with the stuff of sickness: medicine bottles and cups with straws, heating pads and cold packs.
Paul was more visibly emaciated and slower to speak than his father. How the two had reconciled wasn’t clear. They mustered the energy for sarcastic barbs that struck Ostaseski as encoded messages of love and loyalty, even if no obvious warmth bridged the space between them.
Outside the room, Ostaseski broached to Agnes the possibility of admitting them to an inpatient facility, if only to ease the burden on her.
Her eyes sharpened. “Nobody is putting my sick husband and son in a nursing home. They belong at home,” she said. “That’s a promise I made to them both.”
The promise held. Paul died within a month, and Sam followed his son by a few days.
They were loved, and they loved well enough to fuel the efforts of a woman who would not let them die apart. And after Agnes organized their service at the church, friends arrived at the house and carried casseroles past her son’s too-empty room and they put their hands on her.