A home before death: Sacramento coalition wants to build a hospice for terminally ill homeless people

After becoming homeless in his late 50s, John Gay said, he got drunk one night in Denver and fell asleep on a light-rail train to stay out of the freezing winter cold. When he awoke, he was arrested for trespassing, one of six misdemeanor charges against him (four with active warrants), according to the Denver County Court. Facing jail time, Gay said, he ducked out of town and bounced between Sacramento and his home state of Louisiana, looking for a place to stay—all while dealing with a terminal case of multiple myeloma.

A little under two years later, on December 20, 2017, he sits at a board meeting for Joshua’s House, a proposed hospice center for those who are terminally ill and have no place to die. In addition to eventually becoming one of the first residents of Joshua’s House, he’ll also be the honorary “writer-in-residence,” documenting his and others’ lives for posterity. As a member of the advisory board, Gay and another formerly homeless person, Dee Marie Chavez, provide the crucial perspective of the population Joshua’s House aims to serve.

“I want to help,” Gay said. “I don’t want to just die.”

Alongside Gay and Chavez, there’s an advertising executive, a Sister of Mercy, an artist and a variety of health-care honchos who have gathered to hear a status report from Marlene von Friederichs-Fitzwater, the tireless engine behind the project. Later in the meeting, von Friederichs-Fitzwater showcases the blueprint for the dormitory that can house 16 to 20 people and allow them to end their lives in a tranquil space with loads of natural light, abundant greenery and 100-year-old wooden trusses that would be the envy of any interior decorator.

After months of work, Joshua’s House has reached a critical point in its development: von Fredrichs-Fitzwater has lined up the political and logistical support to make the project happen. But despite several fundraising endeavors that are either completed or underway, more donations are needed to reach a $903,000 goal that she expects to hit by the end of March. Even if the capital comes through, the almost unprecedented project begs the question: Will those experiencing homelessness use it?

These uncertainties aside, last month’s meeting was a cause for celebration as von Friederichs-Fitzwater informed the board that they’re in escrow on the future site of Joshua’s House, at 1501 North C Street, a historic warehouse that was the home of the Sacred City Derby Girls, which has generously ceded the space despite lacking another place to play.

After von Friederichs-Fitzwater answered a peppering of questions, the board unanimously approved the blueprint—like most people do when they hear of her project. Already, she has the support of Congresswoman Doris Matsui, county Supervisor Phil Serna, Mayor Darrell Steinberg, area Councilman Jeff Harris and Sister Libby Fernandez of Mercy Pedalers.

Recently retired after 18 years of teaching health communication at UC Davis, von Friederichs-Fitzwater has been working 14-hour days in the hopes of making Joshua’s House a nationwide model. Her reasons for doing so are personal: In 2014, her grandson died on the streets of Omaha, Neb. His name was Joshua.

Names of the dead

One day after the board meeting, dozens gathered in the Trinity Episcopal Cathedral to pay their respects to the 112 homeless people who passed away in Sacramento County in 2017.

For people like Felicia, only a first name was known. Another, Buelna, didn’t even make it to her first birthday. Rudy F. Reynoso died outside at 73 years old. In the four years that the Sacramento Regional Coalition to End Homelessness has convened this interfaith memorial, it was by far the most names ever read, outpacing 2016 by 41 dead homeless neighbors. After each name had echoed off the church walls, Pastor Joy Johnson, board chair of Sacramento Area Congregations Together, contextualized the importance of this ritual.

“It is believed by some that a man is not dead while his name is still spoken,” she said. “That is to say that people only die when we forget them. So if we can remember those who have walked on, off of this physical reality and onto a spiritual one, they will remain with us always.”

Joshua’s House would aim to lower the number of names read in the years to come, but it’s not the first such facility in America. That distinction belongs to The Inn Between in Salt Lake City. Started in 2015 by executive director Kim Correa and Deborah Thorpe, a cancer nurse practitioner, The Inn Between opened with the mission of stopping the “tragedy of about 50 people dying on Salt Lake City area streets annually,” its website states.

When guests are first admitted to the hospice, Correa said, they retain the hardened demeanor that was necessary for survival. But as they settle in and realize the true intentions of The Inn Between’s staff and volunteers, they begin to soften and trust.

In addition to providing meals, companionship and emotional support, The Inn Between offers music therapy, acupuncture, salon services and other features. Similar to Pastor Johnson’s goal of keeping a person alive through memory, the staff posts free obituaries on their website for each resident who passes away. But before then, Correa said, she tries to help residents reconnect with family members who may not have heard from them in years.

One man, John Lukaszewioz—a former engineer who Correa said “lost everything” after becoming addicted to painkillers, then heroin—resisted these efforts for months until he instructed the staff to call his 92-year-old mother.

“John could not talk but heard his mother say, ’I love you and I forgive you,’” Correa recalled. “We told her he loves you, too, although he cannot say it. We could tell by the look on his face. She had not heard from him in 25 years.”

With stories like this, Correa said, it’s odd to remember that their original proposal to the City Council prompted a backlash as local residents imagined a “worst case scenario,” wherein the hospice would act as a magnet for those experiencing homelessness. This experience led von Friederichs-Fitzwater to secure political support before embarking on the construction of Joshua’s House, but Correa said the concerns of the NIMBYs didn’t end up happening. The Inn Between has operated for two years without a problem, Correa said.

But if Joshua’s House gets built, will homeless people come? One of its board members is skeptical.

Before securing housing, Dee Chavez lived for years in an encampment along the river where she developed family-like bonds with the residents—who pride themselves on their independence.

Chavez said that many prefer to live in the encampment as a result of growing used to the lifestyle, distrusting formal institutions and finding a sense of belonging among their fellow community members—the people they’d want around them in their final moments.

“How many people do I know would go [to Joshua’s House]? Not many,” Chavez said. “They’d rather just die on the river. Because that’s their home.”

Still, she believes in the project’s merit. And The Inn Between’s results prove a project like Joshua’s House should have a quantifiable purpose.

From its founding to December 2017, the Utah hospice has provided 10,960 nights of housing and allowed 37 people to experience the end of their lives with dignity, Correa said, adding that their yearly budget is about $500,000. And if that sum seems high for the moral worth of this work, she noted that financially, The Inn Between saves thousands of dollars by eliminating the need for ambulance rides and expensive hospital stays.

Like The Inn Between, Joshua’s House would ease the morally difficult situation of hospitals having to release terminally ill people to the streets, where their health declines much faster. Loaves & Fishes and Elica Health Center’s street team, which provide direct medical services to those experiencing homelessness, have both tried street-side hospice care, but found it expensive and inefficient.

And yet, even in Salt Lake City, which has a smaller homeless population than Sacramento, Correa said, they’ve been at 99 percent capacity since January 2017 and are seeking a larger space than their 16-bed facility due to the “long” wait list.

For Correa, anything is better than nothing.

“It is inhumane to have someone die on the streets,” she said. “It is inhumane for someone to suffer with a disease where every day it becomes more painful, and they become more afraid and more anxious. Providing a place for individuals who have nowhere else to go is the least we can do as a society.”

Defiantly terminal

Von Friederichs-Fitzwater knows how it feels when death is near. After stints at the Los Angeles Times, then Disney, she was working on a master’s degree in journalism when she got a call from her doctor on a Friday afternoon. He told her she had advanced cervical cancer.

“My commute was about 45 minutes, and I have no recollection of how I got home,” she said. “I panicked. There was no one really to raise my kids. I was the sole breadwinner. I was told I was going to die. And in my head, I’m going, ’Nope, sorry, can’t die right now. Not on your schedule.’”

A single mother in her late 30s at the time, she started treatment immediately, continuing to grade papers as a teacher’s assistant to provide for her children, even as she was “throwing [her] guts up” from the chemotherapy.

As her prognosis worsened, she grew frustrated as doctors and nurses distanced themselves from her, seeing her worsening health as a failure they didn’t want to reckon with. She said she nearly “decked” her surgeon when he dismissed her preoperative questions. But the visits by her family physician were much more appreciated.

“He made a point to come in and just sit on the bed and talk to me,” she said. “And the first time he did that, when it was looking really, really bad, he took my hands, and said, ’This is shit, isn’t it?’ And he and I sat there and cried. And that was more comforting and meaningful to me than anything else.”

She vowed that if she recovered, she would devote herself to studying and improving the communication between medical providers and patients. Eventually, due to a combination of surgery, medication and an admittedly out-there meditation technique where she visualized cancer and attacked it in her mind—she survived.

She promptly switched her focus from journalism to the brand-new field of health communication. She taught at UC Davis for years until her grandson Joshua’s passing gave her a new calling.

To generate ideas for Joshua’s House, she conducted over 150 interviews with people experiencing homelessness, eventually meeting John Gay.

Gay became homeless for reasons that he attributes to a combination of circumstances and bad choices. Born in a part of Louisiana nicknamed “Cancer Alley” for the high concentration of refineries, Gay said, he worked as a chef and a foreman for the majority of his life.

“I ran a crew,” he said. “I made motherfuckers hate me because I drove them. And I would take homeless people to a restaurant and feed them and talk to them, but I would never give them money because I bought into all the bullshit stereotypes: ’I’m not giving some drunk money. I work too hard for mine.’ But not all homeless people [are like] that.”

In 2014, he said, he was struck by a car driven by a woman who didn’t have insurance, leaving him with over $100,000 in medical bills that he “didn’t even try to pay.” This ruined his credit and emptied his savings. Unable to rent an apartment, he recovered in hotel rooms for up to $350 a week. He tried to return to work as a lift operator on a construction site, but eventually the lingering effects from the collision took their toll.

“My legs wouldn’t let me get out of bed,” he said. “Tears were coming down my eyes walking home from work. I was in so much pain.”

He then got covered through the Affordable Care Act, which allowed him to pay for the doctor’s appointment where he learned of his terminal cancer. Meanwhile, he rented a bunk at a Salvation Army for $60 a week, working just enough to earn his rent, but sacrificing his disability check. Gay acknowledged these were tough circumstances, but added that if he had been, say, a devout, tithes-paying member of the Latter-day Saints, he may have been able to keep his bunk.

“Well, drinking got me thrown out of that place,” he said. “And anyhow … it’s important to realize, if I went to a Mormon church and gave my 10 percent, my life would be a little different.”

Once he lost his spot at the shelter, Gay said, he moved back to Denver where he was arrested for sleeping in public. When he ducked out of town, he eventually found housing thanks to friends and a network of Sacramento service providers.

Councilman Harris said he receives dozens of emails and calls a week from constituents upset about the presence and conduct of those experiencing homelessness. He said the gist of these messages is “Councilmember, make it go away, don’t charge me, and don’t put any of them near me.”

Due to the prevalence of homelessness, Harris said, he spends roughly half his time working on solutions, like his Micropad proposal that would build tiny homes. But amid the difficult logistics of resolving the issue, Harris sees Joshua’s House as a necessary piece of the puzzle that he’s “more than 100 percent behind.” For Harris, who said he spent the last three months of his mother’s life as her hospice worker, Joshua’s House establishes Sacramento’s baseline of compassion.

“Everybody deserves to die with dignity,” he said. “Everybody. I don’t care what kind of issues you’re packing around. Your final crowning achievement of life is death and I don’t think anybody deserves to die really poorly in the bushes, gut-wrenchingly sick from chemo. It doesn’t work for me at all.”

Something that lives on

For years, the future site of Joshua’s House has hosted tattooed women throwing each other around an oval rink. But as the Sacred City Derby Girls merge with the Sac City Rollers and search for a new location, their old home will undergo a dramatic transformation.

Featuring 20 bedrooms, a kitchen, a chapel, a multipurpose living room, a library, a laundry room, treatment spaces and plentiful skylights, Joshua’s House will cater to the requests mentioned in the dozens of interviews von Friederichs-Fitzwater conducted with those who may one day need a final place to sleep.

Built with assistance from HomeAid and legal counsel from the Thomas Law Group, the facility will have a lobby backed by a burbling waterfall and an interior filled with trees, vines and bushes. The natural touches serve a dual purpose as they ward off the vibe of a sterile hospital, while also catering to prospective residents who said they enjoyed their proximity to nature while living outside.

Located near Friendship Park and Loaves & Fishes, residents will be able to bring their pets, take day trips and host visitors. There will be about six staff members, including an onsite couple that will stay at Joshua’s House overnight. The workers will be supplemented with more than 100 volunteers to do everything from walking dogs to reading books to assisting with some of the minor care needs Joshua’s House will provide.

The advisory board has also assigned a small task force to work out all the specific policies and procedures for operating a basically unprecedented facility. So far, one policy is ironclad: Since the need for housing is so great, prospective residents must be referred by a medical professional who has diagnosed them with a terminal condition.

“This way we know we’re reaching the right people,” von Friederichs-Fitzwater said. “We can’t have somebody off the street going, ’I’m dying,’ and give them a bed. I wish we could!”

But unlike some other service providers, a prospective resident’s financial situation and history of arrests or substance use won’t factor much into their acceptance (although no alcohol or drug use will be permitted on the grounds). This sort of philosophy is one that Gay wishes was more widespread.

“If it wasn’t for lifelines, we would drown,” he said. “And you can’t be so paranoid to think that everyone you throw a lifeline to is going to hustle you. Then you’re going to quit throwing lifelines and you’re letting a bunch of innocent people drown.”

Using the input from her interviews, von Friederichs-Fitzwater has filled out the facility with features to ensure that her residents’ final days can be full. They’ll offer guest lectures, restful treatment like acupuncture and massages and instruction in music, art and writing to give residents the chance to leave something tangible behind after they’ve passed.

“Homeless people, most of them, feel like they’re invisible,” von Friederichs-Fitzwater said. “That people don’t even recognize that they exist. One of their biggest fears is dying alone on the street and that once they die, they’ll be completely forgotten. So part of what we’re trying to create at Joshua’s House is a way for them to leave a legacy where they won’t be forgotten. They can have something that lives on.”

Some time this year, von Friederichs-Fitzwater said, Joshua’s House should be offering warm beds and more. Hopefully, Gay will be there waiting for them.

“We’re gonna give you a place to die,” Gay said. “We’re not gonna judge you. We’re gonna love you. And we’re gonna let you love yourself, in case you haven’t had a chance.”