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The place where no one dies alone

The INN Between makes sure terminally ill homeless people have shelter and company at the end of life.

By Lois M. Collins This email address is being protected from spambots. You need JavaScript enabled to view it. 

Sept 19, 2023, 9:00pm MDT

Photography by Laura Seitz

To see photos, visit: https://www.deseret.com/2023/9/19/23217478/homeless-streets-dying-hospice-not-alone-inn-between-utah

As Paul Youngblood lies withering and fragile in his narrow bed, Bernard, the stuffed dog pillow he loves, is tucked gently against his legs. Those around him are careful to make sure someone holds his hand. He is sociable by nature and loves touch, so the death doula switches hands with a volunteer with whom he’s close. Before she removes her hand hours later, another hand takes its place.

Although he spoke of times when he felt achingly alone in his life, Paul, 65, is not alone at its end.

A blue butterfly magnet on the outside of his tiny suite’s door tells those nearby to be a little quieter and more respectful: Their friend Paul is leaving.

Paul came here to The INN Between to die. So did Issaac Chavez, just 38, and Jon O’Rourke, now 66, though their stories took unexpected turns.

Outside the quiet and calm of this dimly lit room, in the very early hours of an August Friday

morning when chronic obstructive pulmonary disease and heart failure finally take Paul, dozens of other formerly homeless people are sleeping nearby. Soon, they will rise and prepare for the day — and, in some cases, their own deaths.

Photographer Laura Seitz and I spent 17 months visiting The INN Between, getting to know residents, volunteers and staff, documenting journeys to understand the facility’s challenges and its value. We followed residents who moved, those who died in hospice care there and one who, desperate for pain relief, ultimately revoked hospice and went to the hospital.

During that time, 22 formerly homeless residents died — about a third of them women.

Not one of them died alone.

A model effort

The INN Between in Salt Lake City was one of America’s first hospices specifically for people who are homeless, though others now replicate its mission to ensure that those who are terminally ill don’t die alone or on the streets. The building, now located in what was an assisted living center, first opened in 2015 in a former convent. Creating a comfortable place to die for those without homes was the dream of Deborah Thorpe, a longtime palliative care nurse who was heartbroken to see homeless people return to viaducts and riverside camps after receiving care for devastating illnesses. She and Monte Hanks, who then worked at The Fourth Street Clinic, got the ball rolling to secure a small facility where a dozen or so gravely ill unhoused individuals could be out of the cold, dry, fed and cared for as their lives wound down.

Officials estimate 582,000 homeless individuals lived on America’s streets in 2022. The number of deaths isn’t clear. The National Health Care for the Homeless Council offered a disturbingly broad estimate: 5,800 to 46,500. An organization called Homeless Deaths Count said 7,877 died “in cars, tents, shelters and on the streets” in just the 73 cities and counties where data was gathered in 2020, including 53 deaths in Salt Lake County.

Dignity and comfort were the gifts The INN Between was built to provide to those who lacked almost everything else, though love and camaraderie almost immediately became part of the package. As the program blossomed, it moved to its new location in June 2018, bolstered by grants and donations, but hampered a bit by a really angry set of neighbors who wanted no part of what they viewed as a risk. They’ve softened considerably since, an early protest organizer has told reporters.

The INN Between now has 50 beds, its mission expanded from end-of-life care as an assisted living facility to also include separately 25 beds that are called “eleemosynary,” a nearly  unpronounceable word that refers to the charitable, congregate short-term care provided for those recovering from illness and injury.

The inn itself is not the hospice; rather, it works with local hospice providers who manage care of its terminally ill residents. The recuperative side is not a nursing facility, though a nurse manager and certified nursing assistants can deliver medications to residents throughout the property.

Private gifts of time and money give life to The INN Between.

Visit any day and you might find volunteers immersed in card games or Yahtzee with residents or maybe reading to them, joking around or consoling them as the moment demands. Volunteers may help prepare meals or vacuum the facility. Hairdressers donate time once a month to wash and cut hair —“a very good touch” for people who may have been treated as untouchable, Kellie Mieremet, the community engagement manager, told me.

Women she calls simply “my Costco ladies” check in when they’re shopping to see what the kitchen lacks, dropping off a case or two of peanut butter or pasta sauce on their way home. The INN Between relies heavily on food donations, including from the Utah Food Bank and a food grocery rescue program. The kitchen manager was a volunteer who became a registered dietitian for the job. Even the executive director, Jillian Olmsted, started out as a volunteer.

When a blue butterfly goes on the door because someone is actively dying, the volunteers are friends, not strangers sitting vigil as life ends.

The gift of presence

On a chilly January 2023 night, Laura and I attended “NODA” training with a couple dozen volunteers, a necessary step for those who want to spend time with someone at their end of life. NODA stands for No One Dies Alone and the training is offered by many organizations throughout the country, including hospices, hospitals and nursing homes.

NODA training prepares volunteers — including many who have never seen death up close — for what they might experience. The emphasis is on being attentive, but maintaining focus on the wishes and needs of the individual who is dying.

At the inn, NOLA — No One Lives Alone — quite naturally transitions to NODA. There are diaries for both, filled out by volunteers, summarizing interactions, sharing insights and snippets that will help others who provide companionship.

In the diary that volunteers kept of Paul Youngblood’s final weeks, there are stories of losses and gains and suffering. He loved playing games like Battleship, but was often too tired. He yearned for more time with his family and took comfort in the sounds of the ocean on a volunteer’s phone because he’d grown up in California and body surfed when his own body was young and strong and not yet broken.

One after another, Paul’s volunteer companions wrote how they brought him ice cream and sugary hot coffee — often the only things he craved. He was always polite, they wrote, genuinely grateful for whatever attention and love he received. He’d worked most of his adult life as a cook and a certified nursing aide. His grandson, Sylys Dye, said Paul became homeless six or seven years ago. He’d helped move a fairly hefty patient at work and injured his back. He became addicted to the pain medication prescribed and that was his unraveling. Addiction would plague him to the end of his life.

Married 32 years before things fell apart, he never stopped talking about his ex-wife, Jane, the love of his life. A few weeks before Paul died, Sylys arranged a visit from her that fueled a temporary, buoyant rebound.

“I loved seeing Paul,” one of his regular volunteers, Amy Leininger, said of their frequent interactions. “He was calm and gentle and sweet. And we became real friends.” He had written poetry most of his adult life; sometimes he shared it with Leininger and other volunteers. She said Paul liked to get little gifts for others and he loved beautiful things, so in the weeks before his final decline, they made trips to the lobby, where he would buy pretty, inexpensive handmade jewelry created by other residents participating in the Beading Hearts program at the inn.

By July, Paul was uncomfortable and often in great pain. He slept sporadically, waking briefly to tell stories to his visitors, who each wrote in the NOLA diary how much they loved him. He took joy and comfort in back rubs and neck rubs and having his long hair braided tight. He said he was raised Seventh Day Adventist — his lifelong faith — and he went to a church school in California that required short hair. Later, working as a CNA and as a cook, he always had to keep his hair short. At The INN Between, where so many personal choices had been left behind, he was free to at least choose that, wearing his hair long and silky and often a little bit wild.

He also kept one toenail painted, a nod to his love for his grandchildren. Sometimes blue, sometimes yellow or pink, it reminded him he would exist in the mind of someone left behind, he told me.

The death doula

Doulas typically provide support as a baby enters the world, making sure mother and child feel comfortable and safe. A death doula provides comfort and support at the end of life, often starting weeks or even months before someone dies, working to ensure their last wishes are respected.

Kimberly Peterson, The INN Between’s death doula, took a strange route to the job. She arrived in 2019 as a patient in need of a place to recover and perhaps to die. Getting a bed there, by the way, isn’t easy. There’s an application process, you have to be referred and it takes time — sometimes weeks.

She was very ill with congestive heart failure and wore a mechanical external defibrillator. She’d been told that she could die — terrible news that arrived at nearly the same time she found out she was about to become homeless, evicted from her apartment because her roommate hadn’t paid rent while she was in the hospital. It was hard to tell which news was worse, she said.

She remembers being despondent over her medical condition and afraid of having nowhere to go but The INN Between. She’d always worked, supporting herself and her then-grown son when he was young, but she was now too weak to even take care of herself. She didn’t know much about homelessness — or about her medical condition either, for that matter. “I was scared to be here,” she said.

Then she started making friends.

When John, a house manager who had cancer, was dying, she spent a lot of time with him because she’d grown to love him. They talked through his dreams and regrets and how he wanted his death to go. She helped him with unfinished paperwork, though she hadn’t known much about how to do it at that point. After his death, BooBoo, John’s aging, pudgy pug- dachshund mix, became her baby — and a spoiled one at that, because the other residents love to sneak her food and steal kisses.

Then another friend with a terminal illness, Brett, asked if she’d help him make his final plans. So she did.

While all that was happening, she hardly noticed that she was gaining strength and feeling better. The combination of regular meals, adequate sleep and companionship was working wonders. Her doctor had scoffed gently when she vowed she would get well enough to escape the external defibrillator. With the help of good food and a safe haven, not to mention a sense of purpose, she now lives without that machine, although her heart function is still far less than optimal.

While she’s in a much better place physically than she was when she arrived at the inn, she was offered a place as one of the house managers, so she stayed on.

She got another offer, too. David Pascoe, a chaplain who has since retired from his role as member of The INN Between’s board, noticed how residents responded to Kimberly, who seemed extraordinarily comfortable among those who are dying. He suggested she take the certification class — about 30 hours long — to become a death doula. So Kimberly, now 51, discovered a purpose and a job she hadn’t known existed.

Making amends

Kimberly said Issaac Chavez changed her life because he was so deliberate about how he wanted to live his own as it was slipping from his grasp. He did not want to die, but faced with the inevitability of his lung tumors, he became very intentional in making every moment count.

Issaac had a long mental list of things he needed to do and checked them off one by one, Kimberly said recently.

The last item was spending time with his dad and his paternal grandmother; he hadn’t seen them for a while and worried he wouldn’t get a chance to say goodbye. On his last morning — though no one knew it was, including Issaac — his mom drove him to Ogden to spend some time with them. He almost didn’t go, because he didn’t feel well, but he felt a sense of urgency to see them. His mom, Rita Orosco, didn’t stay, because she and Issaac’s father had been divorced for years, but she’d rooted for their relationship.

People tend to think that those who become homeless choose that life, but asking often reveals a different story entirely: Lost jobs, lost homes, lost relationships, huge medical bills, mental illness, substance abuse and other factors chip away at what might be considered a more traditional existence.

Issaac was the rare creature who actually did choose to live on the street.

He told me that he never quite felt like he fit in as he was growing up and he was always drawn to others who, in their own different ways, didn’t quite conform. Among others living on the streets, he found community, acceptance and sometimes the chance to be a hero. He took care of his friends, helping them find warmth when it was cold, gathering food and more.

After he arrived at The INN Between in June, his mom could be found where Issaac was nearly every day from 10:30 in the morning to 6:30 at night, making the 90-minute drive from Evanston, Wyoming, where she and Issaac’s stepfather live.

Like Issaac, Rita Orosco is petite, a trim 61-year-old woman who wears bright colors and smiled and teared up with about equal frequency as her son told his story. She loves him fiercely — always has — despite so many decisions she didn’t like or understand. She told me she gave up on the dream he would come around and marry and have kids and lead a more traditional life. Eventually, her hopes and prayers for him centered around his being safe. It was a huge relief to accept that he was, in fact, “competent” to manage life on the streets, though she insisted he stay one night a week at her home so she knew he was fed and slept in a real bed and could take a bath at least that often.

Only impending death moved him from the streets where he could “MacGyver” to make sure those who were more vulnerable than he was were protected and fed. When people talk about Issaac, they all note that he was exceptionally smart — and versatile. When he took classes at the technical college after high school, he excelled across hands-on trades, including award-winning work with sheet metal.

But he had his own definite, almost fatalistic sense of how the world worked. And he believed life ended when one died. Then, shortly before his death, he texted his mom that he’d been selfish before and was asking God to give him heaven so they could see each other again.

Issaac had been an Eagle Scout as a teen, but admitted wryly that he was no Boy Scout as an adult. He’d even been jailed for a street fight. Incarceration is not uncommon among people who are homeless, although there are many who have never been in jail or prison.

When he learned his persistent cough was terminal lung cancer, he found the news hard to accept. But because he had a quirky sense of humor, despite being badly shaken by the diagnosis, he responded by getting his mom to have a black T-shirt printed up, which he wore often: “It’s not COVID, it’s cancer.”

Issaac had always liked to draw and he doodled scenes as the chemotherapy drugs flowed into a port by his neck. But he opted to stop immunotherapy, which was shrinking his cancer, because it was shredding his quality of life. It made him miserable. Asked about his symptoms, he said he often felt like he was suffocating.

When he drew, his hands and his eyes worked cleverly together, capturing things he’d seen and sometimes things he just imagined. He liked to show off his stack of sketches, now among the treasures he left behind.

One, done in light brown pencil, is a self-portrait of the day Issaac arrived at his temporary new home. In it, he is a small hunched figure sitting in an oversized chair. One senses how overwhelmed he felt. He told his mom that the freedom of his street life was forever gone.

In early July at The INN Between, as Rita talked about the hopes and fears she had for him, he whispered, “I didn’t know that.” He told her he cried every single night — “It’s like my lifetime’s emotions are being compacted into whatever time I have left” — and she whispered back, “I didn’t know that.”

At one point, Issaac said he’s been really hard on his family; that he knew he was difficult to raise. But he thought — hoped — that she was proud of him. His mom agreed that he was “finishing strong.”

Still, no blue butterfly called Issaac’s friends at The INN Between to say goodbye. Hours after he visited his father and grandmother, he struggled to breathe and the pain that had become constant was even more intense. After trying to tough it out while he waited to see if his hospice provider wanted to adjust his medication, he called his mom in the early dawn hours and said he’d called an ambulance. He would revoke hospice, with its acceptance of death, and see if the hospital’s doctors could help him with the unbearable pain. He expected he’d soon be back in his room at the inn.

In the hospital, his mom was told Issaac would never leave — his tumors had grown, he had pneumonia and his lungs were filled with blood clots. Death was close. Mother and son had thought he had a few short weeks, not hours. But though he knew he was actively dying, his mother said he managed to joke with the doctor and nurses. Rita summoned family. She called for a priest, but fretted he’d arrive too late, so a pastor who was in the hospital prayed over him. The priest did arrive in time, delivering the Commendation of the Dying, the last rites of the Catholic faith in which he’d been raised. Issaac rallied to take communion. Just hours after revoking hospice, he died in the hospital.

Later, at his funeral at St. James the Just Parish in Ogden, a priest would comment on his name: Issaac means “he will laugh.” He did. His middle name, Xavier, means “bright.” He was.

Too frail for the INN

There are three ways that the end of life can go at The INN Between. Most in hospice die. Some, especially young ones like Issaac, revoke hospice and go to the hospital, Mieremet said. Jon O’Rourke has taken the third path.

Laura and I have known Jon both the best and the longest. He’s 66, lanky and pale with legs that frequently swell painfully from rheumatic heart failure. He was a journeyman plumber when he moved to Utah in the early 2000s from his native California, but was told he’d need to complete night courses to be licensed in the Beehive State. He was already paying for day care for his little boy, Nick, who he was raising. He couldn’t afford it. But he couldn’t keep up with the cost of his home. “Looking back now, knowing how things went, I’d have rented every single room and gone for broke,” he said not long ago. He lost the house.

Like Paul and Issaac, Jon has been incarcerated, his crime and sentence the most serious of the three. They were briefly in jail, while he did a few years in a medium-security prison in California. In the first conversation I had with him, he wanted to “get the mud out of the way first thing. I robbed a bank. But since I got out, I haven’t committed a crime,” he said, noting more than 30 years have passed.

He adores his son and wishes he was closer to his daughter, who he says struggles with his rocky past. “Forgiveness is hard,” he told me, “but I know from experience you feel better when you do it.” His closest consistent companion for a dozen or more years has been a sweet-natured, long-haired black cat named Tyler, adopted as a kitten. Tyler has lived with him throughout his homeless journey, including at The INN Between. There are other pets, including Kimberly’s cat, a female named Roger who senses when someone is dying.

A conversation with Jon is part philosophical, part comedic. He has a wry wit and a talent for astute observation, but he’s the opposite of Paul when it comes to sociability. He’s uncomfortable mingling, though feeling lousy and the specter of death have him longing for company. “I used to hate to be with people,” he told me in June. “Now I can’t get enough of them.”

Jon likes to reminisce about his teen years in Huntington Beach, California, when he’d wake up before daylight broke and put on his wetsuit to go surfing with pals, crisscrossing waves and

feeling entirely free. He sang in a band when he was young and “I guess kind of good- looking,” he said. But a money crisis put him on a bad path. Later, his career as a plumber wore down his back. Prescribed painkillers knocked down the pain but let his body erode even more. Now chronic pain is his reality and he’s been told his heart failure is terminal.

Jon nearly died a handful of times at The INN Between this year. Each time, he hallucinated, later describing vividly how he wrestled with the devil for his very soul. He worries aloud sometimes about what God thinks of the journey he’s made. Not all of his dreams are terrifying, but they all feel real. One day he called me to say he thought he’d spent the night on an ocean liner and was mad they wouldn’t let him up on deck to see the ocean.

“I go strange places when I’m really sick,” he said.

Jon feared the day a blue butterfly would go on his door. But like Issaac, he won’t die at The INN Between, although that’s why he came here. He fell often over the early summer, exceeding the medical capability of the place, which isn’t licensed to care for someone with his ambulatory needs. He was transferred, albeit reluctantly, to a nursing facility, where he spends some of his time dozing, with Tyler on his feet.

Saying goodbye

Much of life in the tan brick INN Between is mundane — an apartment life of sorts, but with lots more structure and rules. People have been discharged for repeated offenses like sneaking in drugs or alcohol, which simply aren’t tolerated but which for a few have near- overwhelming allure.

Sylys got mad when The INN Between wouldn’t let him stay overnight on a particular evening near the end of Paul’s life. Olmsted said they have strict rules about making arrangements with the administrator in advance and that hadn’t happened. She told me that’s especially important because some residents, including Paul, battle addictions and the rule helps ensure alcohol and drugs don’t come into The INN Between. He was allowed to stay later than usual, she said. Paul failed so rapidly, though, that Sylys mourns the conversations he didn’t get that night, before his visits became a vigil.

Issaac broke a rule which, combined with the challenge of making sure he had adequate pain medication while he was away, led staff to decide that a trip with his family to Park City for a few hours was a wiser option than an overnight stay in Wendover.

It doesn’t help that each resident at different times feels crabby or unwell. Or both. And sad, because everyone there cares about — or is themself — someone who’s dying.

Despite challenges, it’s clear to an outsider who hangs around for months that the mission is a masterpiece of compassion. It’s easy to see why The INN Between is being replicated in scattered communities nationwide.

Transitions and transformations happen here. Before she died last November, a resident named Patty Walters, 67, told how she changed — a metamorphosis as complete as that of a caterpillar. She’d often been angry and mean, but in this place she found friends and laughter and a measure of peace.

Across the parking lot to the east of The INN Between, there’s a rock garden memorial to the dead. Since the doors first opened in the old convent, 122 blue butterflies have signaled a final passage.

Last fall, I sat among residents and volunteers who gathered for a memorial for a man named Ricardo. Death is an occasion marked by a service to honor a friend who is no longer in between life and death, this one led by ecumenical chaplain Alison Desiderio Peterson, a deacon at St. Mary’s Episcopal Church in Provo. There was a giant cross on the wall, but there were also symbols of other faiths: a Buddha, a Star of David and more. All are welcome.

When someone dies here, this community lines the hall, an informal honor guard as the body is removed. Said Kimberly, “When somebody leaves for the last time, we all line up and say our last goodbye.”

It is the opposite of dying alone. ■