Stephen and I sit across from each other at the hefty oak table in the dining room. Framed photos of friends and family members line the buffet at the side of the room, and goldfish swim in lazy circles in their tank. The house is quiet, and afternoon sunshine slants through the glass-paned door to the garden. I watch as a calico cat stalks on tiptoes through the grass, eyeing a sparrow perched on the lip of the birdbath.
Jamie wanders in from the kitchen carrying a tall glass of something pink.
“Want one?” he offers, cocking his head slightly to the side.
“What’s in it?” Stephen asks.
“Oh, strawberries, yogurt, a little protein powder,” Jamie says, and flashes an eye-crinkling smile. “I’m trying to keep the weight on, you know?”
“Yeah, me too!” Stephen quips, patting his belly. “Sure, I’d love one.”
It’s a brotherly exchange, easy and familiar. But the two aren’t brothers. Stephen is the manager of Sarah House: Santa Barbara’s residential home for the dying poor. Jamie is a resident.
A Sea Change in End-of-Life Care
A quarter of a century ago, Sarah House sprang out of a dire need. In 1989, the AIDS epidemic was in full swing, and all across America, young men and women were dying, many of them with nowhere to go. Retired Santa Barbara social worker and Hospice of Santa Barbara founder Alice Heath was determined to give them a home at the end of their lives. With the help of community benefactors, volunteers, and a small staff, she opened Heath House on Sola Street in 1989.
Among those who worked at Heath House in the 1980s was Debbie McQuade, now the executive director of Sarah House. “At that time, AIDS was not chronic; it was fatal,” McQuade remembered. “There was a lot of paranoia and fear out there.” Despite that fear, Heath House found widespread community support. “We’d get brownies, lemon bars, and unsolicited checks pretty much every day,” she recalled. Through the early 1990s, Heath House was home to more than 200 people, many of whom lived there for a matter of days or weeks before dying. Then, in the mid-‘90s, new combinations of drugs became widely available, and the death rate from AIDS began to drop dramatically.
As the needs of the community changed, Heath House reconsidered its mission and expanded its services to providing end-of-life care for those with low income. Thanks to a significant financial contribution from boardmember Sarah Shoresman and to the Santa Barbara Housing Authority, which secured both the property and a HOME grant to build there, the eight-bed Sarah House opened its doors in 1994.
Located on Modoc Road near the busy intersection of Las Positas and the 101, Sarah House is a surprisingly tranquil spot, where private bedrooms and spacious common areas open onto quiet courtyards, patios, and gardens. In order to live at Sarah House, most residents must qualify as low-income, be approved for hospice by a doctor, and be receiving end-of-life care from one of the region’s hospice agencies. Sarah House is a social model rather than a medical model hospice.
Although health-care providers come and go all day long, the staff of Sarah House are not certified medical professionals; they’re resident assistants who specialize in caring for residents at the end of their lives. For its end-of-life care, Sarah House receives no Medicare or MediCal funding; the minimal federal funding it receives is earmarked for a small percentage of residents with HIV, like Jaime.
Sarah House is not the only residential home for end-of-life care in Santa Barbara, but it’s the only such home with a mandate to serve a low-income and homeless population. This means, among other things, that the families of most Sarah House residents are ill equipped to make large financial donations and that funding remains a constant challenge. Every year, Sarah House serves about 70 residents in the final days and weeks of their lives. It turns away many more.
In 1994, when Sarah House moved to its current location, Jamie Gardner might have been one of the young men who came here to die. Today, he’s a 54-year-old man living with HIV. Unlike the majority of residents who spend their last days or weeks here, he expects to move out soon, having used his extended stay at Sarah House to regain his health. What Gardner shares in common with fellow residents is his surprise at having ended up here in the first place.
“I never thought I’d find myself in this position,” he explained to me, resting his forearms on the dining-room table and leaning in as he spoke. “I was semi-affluent, comfortable, working as a graphic designer.” Yet a drug addiction led to the loss of his health, his relationship, and finally his home. Eventually, Gardner found himself living on the streets, suffering from an undiagnosed case of AIDS Dementia Complex. Eventually, he attempted to take his own life.
“When I got to Sarah House, I was really a mess,” Gardner acknowledged. Over the course of eight months, he explained, he has rebuilt his health, his optimism, and his sense of humor. “It’s actually been fun,” he said. “Now that I’m feeling better, I try to help other people who are just arriving. It’s one way I can give back.”
Gardner’s desire to serve the other residents of Sarah House is part of what House Manager Stephen Jones calls “the medicine of service.”
“We often talk about the medicines of the house,” Jones explained. “There’s the medicine of showing sincere interest in people’s stories: who they are and who they’ve been. There’s the medicine of community and the medicine of ritual: getting dressed in your own clothes, eating your eggs the way you like them. There’s the medicine of service: People who volunteer here often report that they never knew end-of-life care could be like this.”
The most important of all the medicines, said Jones, is the medicine of kindness.
“It’s the oldest and most potent medicine we have as human beings. We know it’s needed because so much of the pain people suffer from is not physical. Loneliness might be the most intractable pain. Just having a place at the table is incredibly potent for people who have been passed over.”
A Place at the Table
It’s a simple idea, but it’s also a radical departure from the way 80 percent of Americans die — in a hospital or long-term care facility, surrounded by medical personnel. It may sound unlikely that a house where people come to die could offer a profound sense of belonging, but that’s exactly how residents describe their experience at Sarah House.
Marie Sottosanti, 95, was eager to describe the sense of community she has felt at Sarah House. A longtime Santa Barbara resident — she worked for Devereaux and General Motors — Sottosanti was diagnosed with diabetes late in life and came to Sarah House recently after a sharp decline in her health. When I visited her room, she was reclining in an easy chair with a view of the patio and garden. “This is not an ordinary place,” she explained, extolling the beauty of her view and describing the way residents and staff “invite me to join them for dinner or to come to little parties. I love them all,” she added. “They’re my friends.”
A few doors down, laconic 64-year-old Ruben Carrisales concurred. “They treat you really good here,” he told me, before turning my attention to the wall across from his bed, which was covered with photos of his children and grandchildren. A Santa Barbara High School graduate and longtime employee of BFI, Carrisales said he was surprised when his son and his daughter brought him to Sarah House, but not unpleasantly. “It’s a nice place,” he said. “And it’s different — really different. They take care of you and everything.”
A few weeks after my last visit to Sarah House, I got an email from Jones. “Ruben is now well on his journey,” he wrote. “His room is full of family, light, and love. Thank you for allowing him to share a bit of his story one last time.”
A few days later, he gave me another update. “Jamie secured housing,” Jones told me. “He’s moving out next week.”
And Sottosanti? “Marie had a very beautiful death on Friday,” he said, adding, “This is a woman with a gravitational pull like we rarely see.”
In a culture where death is to be feared and avoided, “a beautiful death” sounds like an oxymoron. Yet anyone who has witnessed such a thing will describe the same essential features — the presence of loving family and community and a sense of being home. Seems simple enough, but for some, such an ideal scenario feels impossibly remote.
Even in an affluent community like Santa Barbara, thousands of residents cannot access or afford end-of-life care. Those with ample resources tend to assume their situation will remain stable, but Jones reminded me no one is immune from a change in circumstances. Any of us might one day need the services of a place like Sarah House, and that day might come earlier than we expect.
For Gardner, Sottosanti, and Carrisales — as for so many others — the community of Sarah House was there for them when they needed it most.