The Space Between
Life and Death
Nights were starting to get scary.
In the bedroom of their Largo house, he lay beside his wife’s empty pillow, listening to her wheezing through the baby monitor, wondering if he should go and turn her on her side or suction her again.
Just before dawn he padded into the dining room and sank into the chair next to her hospital bed. He reached his right arm between the rails and put his hand on her chest.
“Hang in there, Tootie,” he said softly. “Rene will be here soon.”
He watched her sleep for a while, then got up to make coffee. At 8 a.m. he woke his wife, propped her up, placed the first of seven pills on her tongue. He tipped a mug to her lips, rubbed her throat to help her swallow. He did it again and again. He brushed her teeth. Combed her hair.
“Thank you,” whispered Janice Solava.
“I told you so,” said her husband, Frank, smiling.
Years before, when they had finally gotten a diagnosis — when they had learned there was no cure — Frank had promised Jan he would never send her to some nursing facility. He would take care of her. At home.
Jan had MSA — multiple system atrophy — a rare neurological disorder that destroys brain cells. It’s like a cross between Parkinson’s disease and Lou Gehrig’s disease, amyotrophic lateral sclerosis. Eventually patients lose the ability to control their handwriting, speech and bodily functions.
When Jan was diagnosed, the thought of death had seemed so surreal. The disease hadn’t yet become debilitating. Jan was still teaching middle school, singing in the church choir, cheering at their granddaughter’s volleyball games. Frank hadn’t really believed the end was near.
But in the fall of 2013, Jan fell at their home and snapped her femur. Frank found her sobbing on the floor. At the hospital, a doctor suggested it was time to call a hospice. “She’s not dying,” Frank insisted.
Hospice isn’t to help people die, the doctor explained. It’s to help terminal patients live without pain. And it’s for their families, to give them equipment, respite care, counseling.
Frank and Jan’s daughter, Dana Mlynarski, is a pediatric nurse. She knew that if her mom wanted to spend her last days at home, her dad would need help. She moved in with them, bringing her husband and two toddler daughters. And she persuaded her parents to call Suncoast Hospice.
Workers helped Frank, 67, set up a borrowed hospital bed in the dining room. Aides came every weekday to help Frank bathe Jan, who was 66. Rene Lowry, the nurse, showed him how to clean the tracheotomy incision and clear his wife’s airway.
She told him what to expect. And what he would have to do to keep her home.
“Come on in, Rene,” Frank called when he heard a knock about 10 a.m. “Just come on in next time,” he said, hugging her. “You’re family.”
Jan was Rene’s patient. But it was Frank who counted the days until the nurse’s next visit, saved his fears for when she came. Frank loved Rene’s no-nonsense manner, her loud laugh. And her gentle way with Jan.
“So tell me how you’re doing,” said Rene, 52, flipping her long gray braid behind her back.
“She’s been choking a lot, even on her own saliva,” Frank said. “Especially at night.”
Rene rubbed Jan’s arm and nodded. “Well, you might need to start adding some thickener to the liquids. I’ll get you some,” Rene said. She asked whether Jan was eating, measured her arm and saw she’d lost weight. She asked about pain. Jan shook her head.
“And what about poop? Have you been able to work that out?”
Frank winked at his wife. “We got a system. When she laughs, it’s easier. So I just tell Toots here dirty jokes.”
After visiting Frank and Jan, Rene drove to St. Petersburg for a meeting of the Purple Team, one of 11 care teams at Suncoast Hospice. Twice a month, Rene and a dozen of her co-workers rim a rectangle of tables in a conference room, scrolling through laptops, signing sympathy cards for families of patients who have died, sharing advice.
Rene was late, as usual, and came in carrying a plastic bag full of carrots.
“Welcome, welcome!” said the chaplain, Terri Peterson. “Now let’s all turn off our cellphones and put our personal concerns aside.”
They went around the table, talking about each person who had died. Of the team’s 140 patients, it had lost nine in the past month. One man had been holding on because he was worried about his wife; a woman’s daughter had driven her to Georgia for one last road trip; another woman had been angry until the end, lashing out at her kids and caregivers, insisting she didn’t need to be in hospice care.
“Fear is often projected as anger,” the chaplain said. “She must have been very scared.”
Hospices started opening in the United States in the 1970s, mostly for cancer patients. They aim to keep terminally ill people comfortable at the end. Medicare pays for most hospice services, an average of $150 a day.
In the past decade, the number of people getting hospice care has soared. About 44 percent of deaths now take place under it.
If a doctor estimates a patient has less than six months to live and the patient has decided to forgo life-prolonging procedures such as chemotherapy, he or she can qualify for hospice care. The care includes nurses and social workers, counselors who help make living wills, drivers who take people to doctor appointments, music and massage therapists, and acupuncturists. Volunteers will even make a slide show of photos for the funeral or record a video for the grandkids.
The Purple Team has helped get air conditioning for a man sweltering in a trailer, found a home for an elderly woman’s dogs and arranged day care for a dying mother’s disabled son.
Of course, not everyone wants workers around. Team members have been cursed at and thrown out. They have been asked to take sides in sibling battles and to help save people’s souls.
Why would anyone want to spend their days with dying people? What is it like to know the end is always near? And what happens to people, and families, when they agree to stop looking for a cure? For six months we followed the workers of Suncoast Hospice’s Purple Team and three patients in their care as they worked together to navigate that space between life and death.
The house smelled like sugar cookies. While his wife dozed in the dining room, Frank baked — for their granddaughters, who were 2 and 4; and for Jan, who could get down only a couple of bites; but mostly for Rene, who was on her way that morning.
This time, Rene didn’t knock. “It’s me!” she called. Frank got up and hugged her, then sat back beside Jan.
For the past month, Frank had refused to leave his wife’s side. He wouldn’t run to Walmart or his Bible study group, or meet his brother at Beef ‘O’ Brady’s. He watched his beloved Chicago Bears on his iPad at Jan’s elbow while their flat-screen TV played her shows on HGTV. Their daughter or one of the aides could have stayed with Jan. But Frank had promised he would be there. Just in case.
In the past year, Frank and Jan had spent more time together than they had in the rest of their 45-year marriage. “She’s still my sweetie, still giving me a hard time,” Frank told Rene. “If she had dementia on top of all this, I don’t know what I’d do.”
Jan and Frank had met at Eastman Kodak in Chicago in 1967, the summer of love.
Frank had dark, wavy hair, a chiseled nose and a new Pontiac convertible. “He looked like a gangster,” Jan said. “And he cracked me up. It takes a lot to make me laugh.”
She had cornflower blue eyes and bobbed her blond hair. “And those dimples,” Frank said. “They still kill me.”
He took her to a frat party at the University of Illinois. She took him to church, then home to meet her Dutch parents and nine siblings. She sewed her own wedding dress. He wore a white tux.
When they moved to Florida in 1970, Frank became a plumber and worked at Pinellas County’s wastewater treatment plant. Jan became a counselor at Seminole Middle School, then taught at Keswick Christian School in St. Petersburg. They had two kids, Dana and son Mike.
Once their children were grown, the couple started talking about retiring and spending more time together. They wanted to get a new convertible and drive the Blue Ridge Parkway, ride their bikes on the Pinellas Trail, travel on church mission trips, watch their grandkids grow.
Then, in 2007, Frank noticed Jan leaning to the left when she jogged, listing to the left on bike rides. She seemed tired all the time. During lunch duty at school, she had to lean against the cafeteria wall to keep her balance.
Over the next three years they consulted a half-dozen doctors, holistic healers, Internet experts. At the Mayo Clinic, a team of physicians ran more tests. Finally one said, “I’m sorry.”
“They told us she could live another five months or another five years,” Frank said. “And that there was nothing, really, that they could do.”
Jan had to stop teaching, stop driving. Frank had to retire to take care of her. For a couple of years he could get her in and out of the wheelchair on his own, push her through Publix or a park.
But since Christmas 2013, she had mostly been in bed.
“Jan talks about the end more than I do,” Frank told Rene. He didn’t want to plan for it. Didn’t want to believe it. “I mean, who knows? Doctors could find some cure,” he said. “Or God could come down and kiss her cheek and she’d be back jogging tomorrow.”
Rene smiled. Jan looked up at her. “I always imagined heaven would be very colorful,” Jan said quietly.
“I just see a lot of white,” Frank said.
Jan closed her eyes. “That’s so boring.”
It wasn’t that Jan accepted her death. She just didn’t have the strength to fight it, or see the point. She wasn’t able to move much or swallow. She could say only a couple of words at a time. But she insisted she was content. There was no place she would rather be.
Instead of being in some hospital with strangers prodding her, she was at home where her granddaughters pranced around in princess dresses; where she could hear her daughter laughing with them; where her husband held her hand. Every morning, through the living room window, she could watch the sun rise. And each evening, through the patio’s sliding doors, she could see it set. When Jan did go, she was sure something wonderful awaited her.
But Frank couldn’t fathom the thought of her being gone. To him, Jan was just sick. He was taking care of her. He believed in heaven — in the idea — but his heaven was a blank void.
He didn’t want to live in the past. He couldn’t bring himself to face the future. So he rooted himself in the here and now, telling Rene about their grandson, who was collecting shoes for kids in Africa; about their youngest granddaughter, who was learning to blow bubbles with bubblegum; about craving the best pizza he had ever had, from some dive in Chicago. “What was the name of that place?” he asked Jan.
She had drifted off to sleep. Frank shook his head and stroked her cheek. “What will I do without her to fill in my blanks?” he asked. “Why did God do this to Jan?”
Rene touched his shoulder. “I can’t give you an answer. But she’s still here with you. There is a reason.”
At the Purple Team meeting, hospice workers talk about holding on and letting go. Some of their patients crash hard and are acutely aware of what’s happening. Others are oblivious or in denial. The lucky ones slip away softly in their sleep.
Many are given an opportunity at the end to pause — to reflect and sometimes even to resolve. To reach out to friends they haven’t seen in ages, tell a grandson how proud he makes them. To say they’re sorry.
Sometimes if patients have something to look forward to — a holiday, an anniversary, a granddaughter’s birthday — they will rally to make it to that milestone. Sometimes they hold on for someone else, worrying about leaving a spouse or a child.
Rene told her co-workers that Jan had asked to have her tracheotomy and feeding tubes removed. She didn’t want to go back on a ventilator. She was getting weaker.
They discussed other patients — a woman who thought apple cider vinegar was curing her cancer; a man begging to be baptized; a 41-year-old consumed by ovarian cancer who asked the doctor to remove her catheter so she could have sex with her husband one last time.
And there was Ron. A Marine who had served in Vietnam, a longtime bachelor. Ron was wracked with pain, barely able to stand. But he had just ordered $400 Italian loafers.
“He still has some things to work through,” said Steve Wolf, Ron’s social worker.
Sometimes near the end, you have to help people find forgiveness, for themselves and others, Chaplain Terri said. “If someone is experiencing the pain of guilt or spiritual distress, that can manifest itself in physical pain,” she said. “All the pain meds in the world won’t help that.”
Ron Hayward wanted to die on the water.
“Captain Ron,” 71, didn’t really want to die at all. But because cancer had invaded his pancreas, prostate and liver, because chemo had almost killed him, he wanted to live his waning days with the wind on his skin, the sun on his face and waves rocking him to sleep.
But his sailboat was too small. It hurt too much, getting below deck. No one would be able to stay on it with him.
So in Ron’s Madeira Beach condo, hospice workers had helped his nephew set up a hospital bed next to sliding doors that opened onto the dock. From there he could watch his boat bobbing. Through the screen he could feel the breeze off the water.
“I want a drink,” he demanded one afternoon. “Diet Coke tastes awful without rum.”
His nephew laughed and looked at Steve Wolf, who had just come in. “I’m not the doctor,” said Steve, 61. “I’m the social worker. If he wants to have a drink, if it helps him feel better, that’s okay.”
“Aha!” Ron said, sitting up straighter. “So you guys just blow up that mattress over there and float me down to the American Legion. I’m going to buy a round for everyone.”
Ron had grown up in Michigan, joined the Marines and spent two years in Vietnam. He had married his high school sweetheart, had a daughter and a son, and got divorced when the kids were in middle school. For years he didn’t see them much. He was too busy “living the life” — selling pools in Vegas and Naples, running a marina near the Gandy Bridge, catching cobia, hosting happy hours. In 20 years, he said, he had dated more than 30 women.
Ron’s nephew, his namesake, had moved in to take care of him. Ron hated hospitals and was so grateful that Rene and all the other hospice aides had allowed him to stay at home. He called them “my ladies.” And though it hurt to even move, Ron insisted on looking dapper when they came. His nephew would help him shave and button a Hawaiian shirt and linen shorts. He would pull a golf cap over his head, which was bald from chemo. Then he’d put on a Rod Stewart CD and slide on amber sunglasses to hide the pain in his jaundiced eyes. When his hospice ladies were around, he tried not to show his suffering.
“Hello, doll!” he would say, coughing. “I’m ready for you. Are you ready for me?”
But when Steve was there, Ron would let down his guard. He would say he was afraid, be angry and frustrated. He didn’t put on pants.
“Brought you the paper,” Steve said, sliding out the sports section. “What’s up with our Rays?”
While Steve studied Ron’s bloated legs, his sallow skin, his blue fingers, they talked about baseball. Then golf. “You know, the last time I played, I shot my best ever, a 75,” Ron said. “It’s so unfair. I’m finally playing the best golf of my life and now it’s over.”
“Well, you got to beat all your buddies, so they know,” Steve said.
Ron laughed, then winced. Even laughing hurt. “And now I’m off to that great golf course in the sky.”
“So how are you feeling?” Steve asked.
Ron waited, thinking. “You know, you hear people talking about they’re in so much pain, they’d rather be dead. Well, if I could spend the next three years in this bed, even in this pain, and have all these people coming by to see me, I’d do it.”
He told Steve his golfing buddies had been by and his fishing crew, the guys from the American Legion and the sailboat club, his happy hour neighbors. His ex-wife had brought their son.
“Have you seen your daughter?” Steve asked.
“She’s in Austin for work,” Ron said. “She’ll be back soon.”
As Steve left that day, he pulled Ron’s nephew aside and told him to call Ron’s daughter. He needed to talk to her. There wasn’t much time.
Jill Hayward flew home the next day and hurried to her dad’s condo. She touched his cheek, told him she was there with him and that she loved him. Ron struggled to open his eyes. He told her he was proud of her. Then he said something he had never said before: “I’m sorry.”
An hour after she left, he died.
At the funeral, Ron’s nephew saw his son for the first time in two years. They reunited at the American Legion, over rum and Cokes. One last round for Captain Ron.
“Okay, everyone. Let’s get started,” the chaplain said at the Purple Team’s next meeting. “What we do is really hard emotionally. Patients are dying every day. What do you do with that?”
She looked around the room, letting the silence sink in. “We share their stories,” Chaplain Terri said. She talked about meaning, helping patients understand that their lives had a purpose. Sometimes, she said, the most important thing hospice workers can do is let the people know that they mattered.
Like the shoeshine guy from the airport who thought he had wasted his life until the chaplain showed him that he had helped travelers get ready for job interviews and family reunions, all the most important moments.
“Now,” said the chaplain, “let’s remember those we have recently lost.”
Steve talked about Ron, about his personality and pain. “Even in death, he was the life of the party.”
Then they turned to people who had been with them for a while. Did they still need hospice services?
“Jan Solava is still very appropriate,” her nurse, Rene, said. “Her decline is slow but steady. Her husband is still planning an anniversary party for around Christmas, when she will have been with us for a year.”
In the corner of the room, counselor Al Perrone looked up. A year was a long time to be under hospice care, but his favorite patient had been with them for almost three years.
Like Jan, she was starting to fade.
On bad days, Bonnie Shellhorn didn’t leave her room. She stayed in bed reading, with her cat curled beside her, next to a shelf that held the urns of her sister’s and husband’s ashes.
On good days — when Al was coming — she pinned back her soft gray curls and dragged her oxygen tank into the living room. She eased into the armchair across from the wide window to watch for the hospice counselor.
“When Al walks through that door, everything’s okay,” said Bonnie, 78.
Bonnie had been a cheerleader at St. Pete High when in 1953 she met a boy named Jack. She knew he liked her, but he wouldn’t ask her to the prom. Then his mother enrolled him in a dance class, and he worked up the courage to whirl Bonnie across the St. Petersburg Coliseum.
As soon as Bonnie and Jack graduated, he got a motorcycle and they got married. She followed him to Air Force basic training in Mississippi. They raised two sons and a daughter, and lived in Texas, Alaska and England. When Jack retired, they returned to St. Petersburg and bought their first house. Jack filled the sun porch with model VWs. Bonnie hung a bear skin on the wall.
Her breathing had started slowing years ago: chronic obstructive pulmonary disease. In December 2011 she went into hospice care, with her husband helping at home. When his heart failed, her older sister moved in. In two years, she lost them both.
Each of Bonnie’s children had asked her to move in with them, but she didn’t want to be a burden. So she stayed in that white house with the flamingo shutters and her shy cat, Miss Kitty. By October, Bonnie had been in hospice care longer than any of the Purple Team’s other patients.
“We thought hospice would help her die, but it’s actually kept her alive,” said Bonnie’s daughter, Penny Shellhorn-Schutt. “Treating her at home, keeping her out of a nursing home or the hospital, has cut down on so many infections. She doesn’t have that anxiety about leaving the house and running out of air. And they’ve given her dignity — even friendship — when she needed it most.”
Bonnie’s children stopped by almost every day. Two housekeepers made meals and did laundry. The chaplain came to give communion. Aides helped her bathe. Every evening hospice volunteers made “pillow calls,” to make sure Bonnie was okay, to make sure someone told her good night.
Still, the house was often empty. In more than 70 years, Bonnie had never lived by herself. Since her sister had passed away two years earlier, her biggest fear had been dying alone. “I don’t know why I’m still around,” she’d say. “Why me?”
“Because you’re special!” Al kept telling her. Al visited his other 39 patients every other week. But each Wednesday he bent to hold both of Bonnie’s hands, then kiss her papery cheek.
“Well, now …” he started.
He called Bonnie his “after-dinner mint.” He always saved her for last so he wouldn’t have to hurry off to see someone else.
“Oh, Al!” she cried in a raspy whisper. “How are you? Can I get you anything, my dear?”
Al laughed and kept hold of her hands. “Don’t you dare get up, Miss Bonnie. Now tell me how you’re doing.”
Bonnie was getting weaker, struggling to stand, gasping for air. But she never wanted to talk about herself. She spent most of her days alone with her thoughts. She didn’t need to say them out loud. Her world was confined to the view from her living room window: the empty driveway, the neighbor’s garden, a tiny wishing well.
Hospice workers — especially Al — brought the outside in to her. Bonnie listened and asked questions, made them the center of attention.
“Oh, I should be dead by now,” she said softly. “But I’m not in a hurry to get to heaven. If there is a heaven, I don’t know if I’d get there anyway. I’d much rather hear about Disney.”
They were an unlikely pair: the frail, quiet great-grandmother who seemed so prim and the tall, gay, boisterous counselor who at 42 still doodled superhero cartoons. Bonnie hungered for tales of Al’s antics at Space Mountain and meeting Mickey at Disney World; she made him show her cellphone shots of Cinderella’s castle. She knew he had spent his career counseling AIDS patients, people whose lives were taken too soon, and old ladies like her who seemed to be lingering too long. She knew how much Al needed to escape to Orlando or take a Caribbean cruise with his partner.
“For our next trip, we’re going to Vegas. I won’t see you for two weeks,” he said.
Bonnie nodded slowly, then reached out to touch Al’s arm. “Now you be safe,” she said. “Don’t do anything foolish! Bring me back lots of stories.”
The next time Al saw her, he knew. He persuaded her to go to the hospice care center, where people could watch over her constantly, and waited with her until a driver arrived so she wouldn’t be alone. Then he called her daughter, who phoned the rest of her family.
The next night, in a dim, sprawling room at the care center, 14 relatives circled Bonnie’s bed. Her granddaughter sat Bonnie’s 1-year-old great-grandson by her side. Al wept.
“No one grows up wanting to work in hospice,” Chaplain Terri said before the meeting. “Most of us started out trying to save people. But then we found ourselves called — even compelled — to do this.”
Day after day, night after night, hospice workers drive to the homes of up to 40 patients — rich retirees in waterfront mansions, single moms in leaky mobile homes — guiding them and their families through their final days.
The Purple Team members know they can’t cure their patients. But they keep most of them comfortable and try to ease them toward a peaceful end.
Steve Wolf’s mom also had been a social worker and had lobbied to start a Pinellas County hospice. Al Perrone had started out counseling grieving children. Rene Lowry had tried every type of nursing, but when she watched a woman die, she knew what she had to do.
“At the end, there’s no BS,” Rene said. “Everyone has to be honest.”
The job isn’t for everyone. According to the Journal of Aging and Health, the turnover rate for hospice workers is about 30 percent. At every Purple Team meeting, at least one position is open.
Even the longest-serving members of the team have their limits. Steve steers away from families squabbling over money. Al left the case of a woman who criticized his size and sexuality. When situations seem too sad, Rene pulls out her phone and shares cat videos.
“Sometimes,” she said, “all you can do is laugh.”
No matter how many years Purple Team hospice workers have been in the business, they all said it never gets easier. Team members often grieve and, like the family members, have to figure out how to move on.
“My heart is in my throat today,” the chaplain said. “You all know we lost Bonnie. She will be so missed.”
Everyone looked at Al, who swallowed hard. “I know we’re not supposed to have favorites,” he said. “But in 13 years on this team, Bonnie is my all-time favorite. When I was with her, I always knew why I was doing this.”
Later in the meeting, they talked about how wonderful it is to see some families rally behind a loved one and how hard it is to go into other homes and have to report neglect. They discussed the advantages of liquid morphine versus pain patches and how to help patients forget about the future they won’t have and instead focus on short-term goals.
“You know my patient Jan? I just saw her yesterday,” Rene said. “She had been holding on to see her granddaughter sing at church, which was probably her last outing.
“Now she wants to make it to her one-year anniversary. They’re throwing her a party. I hope she can hang on another week.”
With Rene’s help, Frank got Jan out of the hospital bed and into the armchair. Their daughter and son were there, with all five grandkids. While the hospice workers filed into the dining room, a music therapist took out his guitar and a teen volunteer handed Jan a balloon.
“What a blessing,” Frank kept saying, looking around at the hospice workers. “It’s hard to believe I’ve had you for a whole year.”
Jan whispered, “You mean I’ve had you.”
The guitar player led a sing-along. One of the teen workers placed a paper crown on Jan’s head. “I know you’re a princess today. But I heard you were really a teacher,” the girl said. “That’s what I want to be.”
Jan smiled. Frank wanted to take pictures. “Come on and climb in by Manja!” he called to the grandkids, using their nonsensical pet name for Jan. So they all jumped in beside her, ages 2 to 11, squeezing between the bed rails, cuddling in her lap.
“Make a silly face!” someone shouted. All the kids obliged. Jan had lost most muscle control, but for this family portrait, she managed to stick out her tongue.
“Who wants coffee? I made cookies,” Frank said. “I can’t thank you all enough for taking care of my wife — and me. I don’t know what we’d all do without you.”
He felt angry sometimes. Why did this have to happen? Other times he wished it could have been him who had gotten sick. But no. He wouldn’t have wanted Jan to have had to take care of him. It was an honor to take care of her, he kept saying. Only Rene knew he was afraid.
Later, after everyone else had gone, Rene helped Frank put away Jan’s paper crown, change her and settle her back into bed.
Frank wondered what Rene’s life was like at home, but he didn’t want to pry. During the eight months he had known her, Rene had mentioned a son but had never offered much about herself.
At the end of the day, even really good days, the guilt gets her. No matter how many wounds she has cleaned, how much pain she has quieted or how many people she has helped, Rene said she never feels like she has done enough. There’s always someone who still needs her.
Rene’s first patient was a bullfrog. She was 12. Her brother caught it in the creek behind their Pinellas Park home. One of its back legs was twisted and swollen. Gangrene, said their mother, a nurse. She told them: It’s going to die.
So Rene put the frog in a box and, with her brother’s help, sliced the leg, drained the infection and nursed the frog back to health. “The silly thing lived,” she said, laughing. “We let him go, but my brother caught him again months later. We knew it was him because of his limp.”
She joined the Air Force because her dad had been an officer; she became a nurse because of her mom. She met her husband in Hawaii, in a pineapple field, under a full moon.
After years in the military, Rene and her husband moved back to Florida, where he became a paramedic. They had a son, Thomas. “Right away we knew something was wrong.”
Their son’s eyes were wide set; he had trouble nursing and taking a bottle. When he cried, he sounded like a kitten. Rene and her husband learned that Thomas was missing part of a chromosome and had a rare genetic syndrome called cri du chat: “cry of the cat.” He would never walk, be able to feed himself or say more than a few words.
“God has a sense of humor,” Rene said. “Thomas eats everything: pieces of wall, Styrofoam balls, doorknobs. But he can’t swallow. So someone has to watch him all the time.”
For 19 years Rene took care of her son during the day and nursed strangers at night — surgical nursing, pediatric nursing, orthopedic, cardiac and obstetric nursing.
Nothing stuck until she was with an elderly woman while she died at Mease Dunedin Hospital. “Her husband was holding her hand; we were saying the Lord’s Prayer. As soon as she took her last breath, an orderly came to claim her body. Someone else needed that bed,” Rene said. “But her husband still needed time with her.”
Rene told the orderly to leave the woman for a while. “The next day,” she said. “I applied to work for hospice.”
She enjoys the personal connection, going into people’s homes, getting to know their families, helping with everything from diapers to IVs. She has been on the Purple Team for five years and has helped countless people learn how to live with death.
She doesn’t tell them about her son, who is 24 and in a nearby assisted living facility. She also doesn’t tell them about her husband, whom she almost lost to cancer. “I try not to bring my stuff in, even when our journeys are similar,” she said. “I need them to share their stories and focus on themselves.”
In her off time, Rene tries to avoid reality. Adult movies are too serious, she said. Teenage Mutant Ninja Turtles is more her speed. On Friday nights she and her husband play Dungeons & Dragons with friends. Sunday mornings she sings in her church choir.
“My dad was agnostic, my mom Baptist. Now I’m a Lutheran,” Rene said. Death doesn’t worry her, she said, not even her own. She knows where she’s going. Still, she never preaches to her patients.
Sometimes people beg her to help them die. Sometimes they beg her to help them live. She tells them only God gets to decide when it’s time to go. “I do whatever I can here on earth,” she said. “After that, it’s up to Him.”
She tries to go to funerals. “But there’s just not enough time for them all.” As soon as she loses one patient, she gets another. “I can’t always say goodbye before I have to say hello again.”
Jan Solava slipped away on a Thursday, with the afternoon sun spilling into the dining room, her husband holding her hand, both of her children by her hospital bed.
Rene had told them it was coming soon, so everyone had time to get there.
Frank wasn’t ready, of course. But he thought his wife looked peaceful and thanked God for the last year he got to spend by her side.
At the service, at First Baptist Church of Indian Rocks, photos flashed over wide screens: Jan and Frank in front of his 1967 convertible, building sand castles with their kids, blowing raspberries with the grandkids. Frank stood beside the casket, greeting guests. “Hey stranger!” he cried when he saw Rene. “You made it! I’ve missed you!”
Only 10 days had passed since Jan had died, but to Frank it felt like forever. “Thank you so much, for everything, my favorite nurse!” he cried. He wrapped his arms around her. Rene felt his tears on her cheek. “You’ll still come by and see me, won’t you?” he asked. “I don’t want to lose you, too.”
Rene promised to stop by, as long as he’d make cookies. Then she slid into a pew near the back, alone.
Frank and Jan’s son, Mike, closed the service. He talked about crawling into bed with his mom to watch cartoons, about sticky summers at the beach, about how many of her students wanted her to be their mom. “When she got this illness, we didn’t know what to do. But hospice was a blessing,” he said. “Mom didn’t have any pain; she was able to stay at home and hold on to her mind — and the remote — until the end.
“I kept asking myself why this was happening, why Mom’s death was taking so long,” Mike said. He locked eyes with Frank, in the front row. “But now I know. It was so we could all see how much Dad loved her.”
Mike sniffled. Then he said, “Thank you, Dad.”
That was the reason. Rene kept telling Frank that he would learn why he got to hold on to his wife. His son had figured it out. Now he knew. Frank looked to the back of the church, to make sure Rene had heard. But she was gone.
She had gotten a text message from the Purple Team. Jan didn’t need her anymore, but someone else did.
[Published: April 30, 2015 11:00 a.m.]
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