NEWS

Andres' story: Finding a bond in his last journey

After learning he had terminal cancer at 45, Andres Perez did not think about entering hospice care. When he did, he found a friend.

William Browning
Bruce.Lipsky@jacksonville.com Sister-in-law Hazel Perez (second from left) brings Andres Perez his pain medication during a visit by Kelly Racine (right). As the pain got worse, he swallowed more than 20 pills a day.

Not long ago, Andres Perez sat on the edge of his bed in Jacksonville talking about his decision to enter hospice.

It was not easy.

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He learned he was going to die a little more than a year ago in a doctor's office in Baltimore, the city he lived in most of his life. He was alone when a doctor came in with test results. Andres feared the worst. His abdomen had ached for months and he had begun spitting up blood. After the doctor explained about the cirrhosis of the liver and the liver cancer, he said the word "terminal."

"That'll scare you," Andres said. "When you're laying there all by yourself - that'll scare you."

He was 45.

Both of his parents had passed away. He had never married and had no children. He always got by with odd jobs, had no health insurance and lived hard. Daiquiris were his drink of choice. His favorites were made with Bacardi 151. He believed his illness was his own doing. He left the doctor's office alone, intent on taking it "like a man."

His family wanted him to move to Jacksonville, live with them and receive hospice care. His sister-in-law, Hazel Perez, had two family members who entered hospice and she felt Andres should do the same.

Andres, though, could not make the decision.

"I thought I would be on lockdown," he said, and he stayed in Baltimore.

He decided to let the disease take its course.

One night he began coughing up blood worse than usual and an ambulance came. He filled two vomit-bags on the way to the hospital. It was then that he felt what was coming and he did not want to face it alone. Soon, he called Terry, his brother, in Jacksonville.

You've got to come get me, he told him. It's time to come home.

Terry drove up and brought Andres to Jacksonville, the family's adopted home city. In late February, Andres became an at-home patient of Community Hospice of Northeast Florida. Hazel became his caregiver. Terry, after two decades of hardly seeing his brother, became his friend.

Like most patients who enter hospice care, doctors told Andres he had less than six months to live.

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Andres was in his brother's living room on the Northside last August as he told his story. A small group of family and friends was his audience. No one flinched as he covered the tougher parts - everyone there knew the story. When he finished, though, he turned toward an empty spot in the room and said something that made the room go silent.

"There's just one thing I can't understand," he said. "They can fix all these people. But they can't fix me."

Kelly Racine broke the silence. She is a psychosocial specialist with Community Hospice who was on one of her weekly visits to see Andres. Hearing him talk about things that can't be explained, she asked him what he had decided to do despite the incurable disease. His eyebrows lifted.

"Make people laugh," he said.

"And what is your word?" she said.

"Survive," he said, and his mood brightened a little.

He chose it during one of Kelly's earlier visits. They were sitting outside when she asked him what one word summed up how he wanted to spend the rest of his time. She told him to let her know the following week. No, he said, I've got it now - survive. He explained that it meant not beating the illness, but making the best of what was left. For Andres, that meant making people laugh.

So when Andres began thinking about the unknown, Kelly nudged him back to his purpose.

"That's my buddy," he later said of Kelly. "I say a prayer for that lady every day."

Their relationship did not begin that strong.

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Kelly was one of the first hospice workers to visit Andres after he moved into his brother's home. Beginning in March, she saw Andres once a week.

The first time she came he was standoffish and business-like. He told her he would beat the disease and she said OK. She does not talk patients out of their feelings.

Part of Kelly's role with Community Hospice is to begin a relationship with a new patient and their family within 72 hours of the patient entering hospice. When she shows up she knows the diagnosis and a little of the medical background. It is her job to assess everything else in a patient's life.

She is there through the entire process, helping with family dynamics, providing emotional support and navigating the patient and family through end-of-life needs.

"Like one of my nurses says, 'You're driving the bus, we're along for the ride,' " she said. "I love that. Because we are accompanying them on this journey."

Kelly has done this since 1999. An indiscriminate hugger, each time she enters a new home she has an urge to take off her shoes.

"It really is sacred ground," she said. "That's what it feels like walking into someone's home who is dying."

Toward the end of her first visit with Andres, Kelly asked if he wanted her to come back each week, once a month or just call him occasionally. He said he did not need her and shook her hand firmly before she left.

About three weeks later, he asked Kelly to visit. They spent an hour talking. He reminisced about his life and asked her to begin coming once a week.

Most Thursdays they sat outside and Andres, who had largely quit drinking, smoked 305-brand cigarettes while Kelly sat in a folding chair she brought. He told her about youthful escapades, about jobs he had worked.

Through the months, Kelly learned who he was.

He was the next to oldest of four children. His father had been in the Army. His little brother gave him the nickname P-Ro. He attended the same high school as Cal Ripken Jr. He liked the Philadelphia Eagles, but called Michael Vick a wimp. He read Forbes Magazine. His favorite TV show was "Criminal Minds."

After moving in with him, Andres tried to go fishing with Terry once a week. He tossed a football with his 17-year-old nephew in the front yard when he could. He talked about making a trip back to Baltimore to visit friends. Kelly and his nurse encouraged him to go sooner rather than later. But he decided to not go back.

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He never wanted to talk about religion.

He never wanted to talk about death.

His conversations with Kelly stayed that way until late summer, when his vomiting became uncontrollable and he entered one of Community Hospice's inpatient facilities. Kelly visited him there.

My God, Kelly. I thought I was dying, he said of his vomiting.

It was the first time he had used the word "dying" and acknowledged his situation to Kelly. After he went home again, he became more open with her and a bond developed. He began hugging her. He began saying, "I love you," when she left from a visit. He talked about regrets, about how he wouldn't have lived the way he did if he could do it over.

He picked his word, "Survive," and, as a gift, Kelly gave him a stone emblazoned with the word.

It was also during this time that he received a permanent abdominal drain to draw fluid off his abdomen. His hospice nurse began coming to the home twice a week to drain the fluid. Because of the drain, he could no longer wade into water to fish.

The cancer spread and doctors upped his pain medication. He swallowed more than 20 pills a day. At the end of August, he weighed a frail 118 pounds and his breathing was labored. He said it felt like a rock was on his chest.

His denial subsided. He told Hazel he wanted to be cremated, have no funeral and for them to keep his ashes.

"He told me he accepted it," Terry said. "He said there is nothing we can do about it."

But he kept his humor.

As his nurse called in a prescription to a doctor during one of her visits, Andres, sitting nearby, rolled his eyes and said, "He's probably going to say, 'Tell the patient to walk out into 295.' "

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Terry, 50, struggled with his younger brother being terminally ill. He did not like bringing it up. The closest he came most days was asking Andres each morning if he wanted him to stay home from work.

Hospice, Terry said, allowed him to have the relationship he wanted with his brother: one where he and his brother went fishing, had family meals together and laughed like friends. Terry focused on those things and let hospice take care of the medical side of a person in the dying process.

"I'd stand on the highest hill and scream it," Terry said of the good hospice did for his family. "They were always here."

Kelly and Andres began spending less time outside during her visits and more time in the living room, where Andres stayed in bed and watch TV. He slept a lot.

When she visited two Fridays ago, he did not recognize her at first. Later, though, he cracked a joke about maybe getting some Viagra. Kelly laughed and told him he still had his purpose.

Before she left they hugged and exchanged I love you's, like they had since his stint in inpatient care.

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He had a bad weekend, stopped eating and was restless each night. Last Sunday, Terry moved his bed by a window so he could look outside.

On Monday, Andres rebounded a bit but got worse that night. Tuesday morning, when Terry asked Andres if he wanted him to stay home from work, Andres said, "Yes."

When their mother passed away in the late '80s, she was alone. Terry was not going to let that happen to his brother.

He told Andres it was OK and laid beside him for a moment.

"I told him it was time to go home, time to rest," Terry said. "Finally, at that point, he let me in."

Later, Terry went outside to smoke a cigarette. When he came back in, Hazel said Andres was resting.

"He looked too still to just be resting," Terry said.

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He leaned in close. It was 10:49 a.m.

Andres died Tuesday morning. He was 46.

William Browning: (904) 359-4619