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For those alone as they die, Phoenix-area hospice program offers companionship, solace

Alden Woods
The Republic | azcentral.com
Jane Conrow touches Robert Arneson's. Conrow, a volunteer with 11th Hour Companions, likes to tell patients, "You're not alone. I'm right here with you."

At the end, in the dying man's final hours, there was so much that Jane Conrow wanted to know.

She met him in Room 211, in an extra-long hospice bed, surrounded by pale yellow walls and the glow of a TV with no signal. Jane slid a chair beside him — close enough to touch, though she wasn't sure if she should — and gazed into his one open eye, trying to picture the life that was about to end. Usually a patient's room told their story, but he arrived with nothing. No photos or mementos. No family to speak for him. No voice to do it himself.

All Jane knew was written on a whiteboard that hung by his bed: His name was Robert. He was deaf. He was blind.

She could see he was alone.

He couldn't speak and didn't move. His body had entered the stage his nurses called "actively dying." They assumed he would die that afternoon.

That was why Jane had come. 

"I just kind of watch them on their journey," she said gently. 

Officially, she was an 11th Hour Companion, a volunteer sent by Phoenix's Hospice of the Valley to sit with patients who would otherwise be alone. But Jane's role was more complex than that. She was an advocate, a guardian, a chaperone into the next life. Another volunteer once described himself as "a patient's last new friend," and Jane nodded her agreement. She soothed family members' fears and stayed when they had to step away. Sometimes, she had to tell nurses that her patient had died. 

She'd met patients in hospices and nursing facilities and private homes, holding four-hour vigils for people she rarely had the chance to meet. Usually she came because a patient's family needed a break — she'd subbed in for husbands who needed to let out the family dog and broken up arguments between grieving relatives.

But sometimes, she came because the patient had nobody else.

"You're not alone," she liked to tell patients who showed signs of suffering. "I'm right here with you." 

Death didn't scare her anymore. It never really did. She was 74 years old, and had already planned her own death, down to the final playlist and the specific hospice room where she'd like to die.

She grew up on stories of her great-aunt, a mortician she called Aunt Sadie, who took Jane's mother on midnight rides to collect the dead. Her mother hated the sight, but Jane was fascinated by the memories. Later, she sat with her life partner and her mother as they neared life's end, doing what she could to make them feel comfortable and loved.

When retirement neared and years of free time appeared on her calendar, Jane joined a local hospice as a volunteer. She wanted to fill her time with "meaning, motivation and structure," and end-of-life care filled all three. It felt like a calling.

She was a retired librarian who still spoke like one, in a soft, deliberate voice. The word "vigil," she liked to tell people, came from the Latin vigilia, which described a state of being awake and alert. It reminded her of ancient Roman soldiers who stood on Hadrian's Wall, keeping solemn watch over their empire. They kept their people safe.

Jane felt that same responsibility. When Hospice of the Valley created its 11th Hour Companion program, she was among the first volunteers.

Her first assignment came in the winter of 2006. She still remembered the man's face. He was a big-band musician. "I can still see him in his bed," she said.

Since then she'd sat with 215 patients. 

Their faces floated in her memory. 

Jane Conrow was among the first volunteers for Hospice of the Valley's 11th Hour Companion program. Since then she'd sat with 215 patients.

Now Jane looked into Robert's one half-open eye and searched for what was still inside. He seemed to sag into his bed, with all his weight twisted onto one side. His skin was the color of saffron. His bare feet rustled underneath a donated John Deere quilt. A nurse had cut open the back of his stars-and-stripes T-shirt, so she could pull it onto his body.

An hour had passed, and Jane still wasn't sure if he knew she was there.

He shivered. He balled his darkening hands and raised them into the air, just a few inches, as if he were pushing something away. Then he dropped them onto his chest. He didn't take a breath.

Breathlessly, silently, Jane leaned forward. Sometimes she caught herself breathing in sync with her patients. Her wooden chair creaked. She lay her left hand over Robert's. His skin felt cool.

Was that it? Was that his final breath? Jane couldn't tell. She stroked his hand and stared into his eyes, then at his chest, then back again. Robert's mouth hung open. His open eye drooped. She felt his hand quiver. Seconds passed like hours. The room seemed stuck in time.

Then Robert opened his mouth wide. 

He took another breath.

We die as we once lived. That's what they say.

End-of-life experts say that if a person comes from an especially tight family, they often won't die until they're surrounded by loved ones. The opposite is true for loners. Little old ladies tend to go quietly, while lumberjack-sized men like to make some noise. It's the circle of life cliché come true: Death brings us all back to where we started, revealing who we became along the way.

And Robert Arneson lived hard.

"I don't know how he did it," Robert's brother, Mark, said from San Antonio. "It's still a miracle to me today."

Bobby, as everybody called him, was cursed from birth by geography and genetics. He was a natural outdoorsman stuck in a Washington D.C. suburb, an addiction-prone man born into a family of alcoholics. An infant's disease and a bad batch of streptomycin stole his hearing before he could walk, Mark said, even though a doctor warned his parents that something could go wrong. The family moved to Colorado shortly after. There, young Bobby discovered a connection to horses. He also started drinking.

All his life, his brother remembered, Bobby had a bottle of whiskey in his hand. He drank until it didn't get him drunk anymore, then kept drinking.

"He would do anything for you," Mark said. "But alcohol changed him completely."

Horses and whiskey. The two constants of a turbulent life. He became a horse groomer, and followed the racing season around the country. He never stayed long. Bobby was always on the move, crashing with friends and paying rent with household chores. He loved to garden. When goodwill sometimes ran out, he slept at the tracks.

He was a loyal man, Mark said. A good friend with a kind heart. But booze made his life lonely. A late-1990s marriage ended in months, and without children. Friends learned to expect a call every few months, and only when Bobby needed something.

"He was pretty much a loner," said longtime friend David Blake, who let Bobby stay in his Colorado home for years. "His big thing was horses and the track. When he was doing that, he was happy. He didn't care."

Through Hospice of the Valley's 11th Hour Companion program, Jane Conrow and other volunteers sits with patients who are "actively dying" in four hour shifts.

But genetics stole that from him, too. He'd inherited a disease that destroyed his retinas. Bobby started going blind in his mid-50s. He lost his job and moved into a friend's trailer in Phoenix.

Death drew near and sheared away the last of Bobby's strength. His body shut down. Cirrhosis attacked his liver. His kidneys gave out. His gut sprang a leak, and filled his bloodstream with poison. He was deaf, blind and dying.

He was 60 years old.

By February, his friend couldn't care for him anymore. He brought Bobby to a midtown hospital and left him there. 

When a doctor called Mark, he didn't know what to do. He and his brother rarely spoke. But he remembered a conversation from two years earlier, when he tried to tell Bobby he needed a nursing home. "I'd rather step in front of a semitruck," Bobby told him, and Mark assumed he still felt the same way. He wouldn't want to die in a facility, draped in tubes and wires. He'd want to keep whatever dignity death allowed him.

Mark wanted to see his brother one last time. But, he said, the doctors told him to save his money.

There was nothing left to do. 

"Let him go," Mark told the doctors.

Another volunteer once told Jane that her goal was to give every patient a PHD.

"A Perfect Hospice Death," she said. Jane liked that. 

PHDs are peaceful and pain-free. Subtle. Serene. Some patients pass so smoothly volunteers have to lean in close, inches from their face, before it's apparent they're dead. One moment, a person is there. The next, they're gone.

But death doesn't always come easy.

"He's having a hard time going," Jane said after two hours by Robert's side. She lifted his blanket and checked his feet, which were now flecked with purple. His fingernails were dark. A thin, pale line emerged around his lips. His breaths had become shallow gasps, rhythmless reminders that he was still alive, if only for a few more seconds.

Jane Conrow (center), a volunteer with Hospice of the Valley's 11th Hour Companion program, and Lynn Tolmachoff (right), watch patient Robert Arneson.

Jane saw death as a journey, a path between this existence and whatever came next, and Robert was stuck somewhere in between. He moved closer to the end, then pulled back. Maybe he couldn't decide. Maybe he wasn't ready.

She pulled back her hand and smiled.

"Tomorrow," she said.

A lifetime in libraries had taught Jane to sit for hours without moving or speaking. She sat, and watched, and waited. The only sounds were Robert's breathing and occasional reminders that there was still life outside. She heard birdsong welcome the year's first warm day and the hallway prayers of a stone-faced family. An elevator chimed and a nurse stepped in. "See you in the morning," the nurse told another before she headed home, rejoining the world of the living.

And then it was nighttime.

Jane's four-hour shift reached its end. She usually felt a pull to stay until each patient's final breath, but she'd learned to keep hard boundaries. Each shift was an emotional investment. If she gave too much of herself to one patient, there might not be enough left for the next.

"Well, Mr. Robert, I leave you in good hands," she said, standing to pack her purse. She moved the chair aside and leaned over his quivering body. Then, one last time, she reached out and stroked his hand.

It was warm.

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Jane closed the door behind her, and Robert was alone again. The nursing staff didn't disturb him. They understood death's patterns. He spent a lifetime by himself, almost always separated from the world around him. He deserved a chance to die the same way. 

But he didn't. He was still deciding an hour later, when a slight, smiling woman with deep wrinkles and dark hair walked into his room.

Jeannie Crotty, who's volunteered as an 11th Hour Companion for about four years, holds vigil over Robert Arneson.

"Hi, I'm Jeannie," she whispered to Robert, dropping her purse and leaning over to touch his hand. "I'm going to be here for the next four hours."

Her name was Jeannie Crotty.

She couldn't count how many people she'd seen die. 

She was a strong Christian, a soft-spoken woman who apologized when the word "crap" slipped out of her mouth. Her faith told her that death wasn't something to be feared. It should be embraced.

"Think of the peace," she told Robert.

She'd imagined it herself. Jeannie grew up on a farm, surrounded by cycles of birth and death. As an adult, she was diagnosed with breast cancer and stared down her own mortality. Her children were old enough to be scared. "We have to die sometime," she told them, but she survived. The cancer went away and left her with an acceptance that death came for everybody. Like Jane, Jeannie had already planned her own death — she'll go out with a blanket over her face, because that's how she slept, and maybe have a glass of wine.

Until then, she spent a couple of nights each week trying to bring people that same peace.

But death's presence still weighed on her. It was a physical sensation. The first time she sat with a dying patient, she felt "little butterflies all over my face," and the feeling still sometimes returned. Four years later, every time she left a patient's side, she spent the drive home in silent prayer. Sometimes her peace returned. Sometimes it didn't, and all she could do was stand under a hot shower and cry. "You're living," she told herself, as she imagined her stress swirling in the drain. "You're living."

"It's OK," she told Robert. She opened his hand and slipped hers inside. "If you want to let go, you can. You can do anything you want to."

Robert didn't react. But Jeannie swore she felt him squeeze her hand.

"We thought he was gone about 15 times already," a Hospice of the Valley administrator said a few minutes later.

Jeannie didn't respond. She kept her eyes on Robert.

"Too tough to die, huh?" she said. "You're waiting for me. Everybody waits for me."

Four hours later, Robert was still waiting. He lived through Jeannie's shift, then survived a night the nurses never expected him to see.

Then the room filled with sunlight. Another morning had arrived, and Robert Arneson was still alive. Each breath became more shallow than the one before. A nurse came to check on him, and had to lean inches from his face to hear a hint of life.

He was still breathing. The nurse turned back toward the hallway, leaving Robert behind. It was just after 10 a.m. Another 11th Hour Companion would be there by midafternoon, taking a seat on the creaky wooden chair and staring at a man they knew almost nothing about.  

But before they could arrive, Robert died.

He was alone.

Jane Conrow, a volunteer with Hospice of the Valley's 11th Hour Companion program, watches patient Robert Arneson.

Reach reporter Alden Woods at awoods@arizonarepublic.com or 602-444-8829. Follow him on Twitter @ac_woods

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