Juan's story: York City man has chosen death over dialysis (video)

[okarol]

Juan's story: York City man has chosen death over dialysis (video)
KATHY STEVENS The York Dispatch
Updated: 07/06/2009 11:14:59 AM EDT


video accompanies the article http://yorkdispatch.inyork.com/yd/local/ci_12761530?source=rss

Nilda Garcia's guide is a thin blue pamphlet titled, "Gone From My Sight: The Dying Experience."

Large print inside the 14-page guide details what she, her daughter and husband can expect in coming days and weeks as her brother, Juan Viera Colon, faces the end of his life.

Doctors cannot predict when Colon will die, only that the time will come as toxins build in his body. He is 49 years old and has kidney failure stemming from other physical health problems. Colon also has a heart condition and chronic high blood pressure; doctors say he has mild mental retardation.

He ended life-saving dialysis June 10, a decision he made after three years of treatment, and one that his family and doctors support.

"He doesn't want to do it
Nilda Garcia hugs her brother Juan Viera Colon at their York City home, Juan, 49, is refusing dialysis to treat his kidney disease. (Bill Kalina Photo)
anymore, and we have to respect his decision," Garcia said while holding his hand in hers one recent afternoon. "He knows he's going to die."

Speaking via an interpreter, Colon said he isn't afraid. Each time he had dialysis, effects such as cramps, chills, fever and mood changes become worse.

He's had enough treatment, says he will not return to a hospital, and has given orders that "no heroic measures" be taken as his health deteriorates, as his body shuts down.

Now he and his family prepare to say goodbye, which is where the blue pamphlet comes in.

Letting go: An employee of Visiting Nurse Association's Hospice Services gave the booklet to Garcia in recent weeks to familiarize her and the rest of the family with death and common traits people exhibit as they die.

It outlines withdrawal from activities and people. Just two weeks ago, Colon was happy to sit and talk with his family. He was up early -- by 6:30 a.m. -- cooked his own breakfast and happily listened to music. Sometimes he took walks just outside his father's East Philadelphia Street apartment.

The city is much different from his native Puerto Rico, the place he left in January following the death of his mother. He doesn't drink alcohol or smoke cigarettes. Colon never married, doesn't have any children.

His mental disability prevented him from holding a steady job, but he worked off and on at a cemetery, helping with landscaping, digging graves.

Back home, he socialized at family functions. He danced, he laughed and, gauging by photographs, was happy. He has always been shy, but in recent weeks has become more withdrawn. He is content to sit alone on a second-floor balcony and watch goings-on along the street below.

Already, the decline the pamphlet discusses has begun. His appetite has decreased, which occurs because the body doesn't need as much fuel as it begins to shut down. He sleeps later in the morning, takes a couple of naps each day and tends to go to bed earlier, too.

The hospice approach: Hospice philosophy is simply to care for patients with respect, and dignity, said Kelly Osmolinski Smith, clinical manager of VNA. She said some people perceive refusal of treatment as giving up. But hospice care is not provided unless two doctors deem the person's life expectancy is six months or less.

For Colon, home is now an efficiency apartment on North Pine Street he shares with Garcia and her husband, Hector Garcia. She insisted she take care of him during his final weeks.

These days it overflows with family: the Garcias, Colon's 18-year-old niece, Abby Laboy, and stepparents who occupy an apartment across the hall.

"It's hard, but it's a reality we all have to go through at some point," Nilda Garcia said about Colon's impending death. "I just want to take care of him, be with him until he takes his last breath. He deserves that."

-- Reach Kathy Stevens at 505-5437 or ksteven s@yorkdispatch.com.

[okarol]

Juan's story: The slow decline (video)

KATHY STEVENS The York Dispatch
Updated: 07/07/2009 02:11:31 PM EDT

video accompanies article http://yorkdispatch.inyork.com/yd/local/ci_12768171?source=rss

Sometimes Hector Garcia has to hide his emotion in another room.

He's a big guy who does not want to display tears. Not now when his family needs him. When he must stay strong and man up.

But these days, tears well without warning, born of stress, fatigue and love.

They come, too, when his brother-in-law Juan Viera Colon, asks to go to Puerto Rico with him. Colon wants to know if he can take his radio and whether his family will be there.

"I tell him yes, to all of these things," Garcia said. "I know he will be going. I know he won't be alive when he does."

Colon is 49 and is dying. He decided in recent weeks to discontinue dialysis, a treatment for people with kidney failure. Colon isn't eligible for a kidney transplant

Bill Kalina video
Juan, part 1 Photo album

because he has other health issues including chronic high blood pressure and heart problems.

His choice: Doctors say Colon's decision is reasonable, that dialysis will not improve his life, only prolong it.

Colon also has mild mental retardation; dialysis has triggered emotional outbursts that at times have resulted in cooling off periods in a psychiatric ward.

These days, Colon seems calm and at peace with his decision, although he has in recent days begun to feel the discomfort of his decision as his lungs fill with fluid, as his kidneys fail to flush toxins from his body.

He moved two weeks ago from his father's East Philadel-
phia Street apartment to Garcia's second-floor efficiency on North Pine Street. Garcia
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shares the apartment with his wife, Nilda Garcia, who is Colon's sister. She insisted Colon stay with her so she could spend time with him and provide good care until he dies.

The family has split caretaking duties, making sure that Colon has around-the-clock assistance. The apartment links via a hallway to an apartment where Nilda Garcia's mother and stepfather live. Doors are left open most of the time, giving family members more space and giving Colon options in his daily routine.

A hospital bed is placed in one corner of the Garcias' main room -- a 15-by-20-foot space -- beside an open window overlooking a tree-shaded balcony.

Take care:And Nilda Garcia's 18-year-old daughter, Abby Laboy, is staying at the apartment to help her mother and uncle. Each morning, Laboy has deflated an air mattress and tucked it beneath the hospital bed. The reverse occurs each night.

The family has fallen into a routine centered on Colon. Nilda Garcia wakes about 3 a.m. for her part-time job at a medical laboratory. She arrives home by 8 a.m., by which time her husband has helped Colon out of bed and with morning rituals of a shave and shower.

The couple splits the cooking, which is a duty Colon has handed over to them in recent weeks. He likes eggs -- scrambled, fried, over easy or boiled -- and toast.

But on this day, he ate half of his breakfast, walked outside to the balcony, sat in his chair and listened to salsa on his boom box. He dozed most of the day, waking for a couple of hours to talk with Darlene Baronsky of Visiting Nurse Association.

She or another hospice nurse stops by twice weekly to check on Colon. They ask how he is feeling, how much he eats and sleeps and urinates. They ask the Garcias and Laboy if they've noticed changes that would indicate what stage of the "last stage" he is in. Colon answers via a Spanish interpreter, replies but does not converse.

Slow decline: Nilda Garcia and Laboy tease each other, telling Baronsky who gives Colon healthy and unhealthy food to eat; Laboy says she only brought him a "little" ice cream the other day.

"It was only, like, two spoonfuls," she says to her mother.

"And who brings him all the hamburgers and french fries?" Garcia asks her.

Colon watches Laboy, taking in her every move. He has known her since she was an infant, had always called her his baby. Now, Laboy says it's her turn to comfort him.

Like Hector Garcia, Laboy says it's not easy to watch someone die, to let him go. Some days are better than others and she says she knows those to come will become increasingly difficult. She gains strength from Colon, from her mother and stepfather.

Baronsky told them Colon's decline appeared very slow, which is easier on the system. She said toxins that the kidneys no longer eliminate would build slowly. He will come to a point, Baronsky said, that he'll sleep more than being awake and at that point will not be in a great deal of pain.

He managed over the weekend to enjoy July 4 celebrations, sharing for the first time with his sister the sights and sound of fireworks in a night's sky from a spot near the York Fairgrounds. But his mood turned as his body began its visible betrayal.

Hospitalized: Nilda Garcia called VNA for advice to alleviate his pain, and stop the frightening sounds she heard. She, her husband and Laboy remained awake Sunday night as doctors at York Hospital made Colon comfortable, easing his pain with morphine.

He returned home Monday evening; doctors said the pain likely caused an elevation in blood pressure and shortness of breath. Doctors sent him home with medication to alleviate his pain. His physical condition will continue being monitored by hospice nurses' visits.

The banter between mother and daughter has slowed, for now. Both are tired from events of recent days.

Talk of Puerto Rico, too, has quieted. They'd hoped they might take him to that tropical place of blue water and rain forests before his death, but he might be too weak to make that trip.

"As long as the last thing he sees or hears is his family's voice," she said. "We want him to be comfortable and to know that he is loved."

-- Reach Kathy Stevens at 505-5437 or ksteven s@yorkdispatch.com.

PHOTO: Juan Viera Colon cuddles with his niece, Abby Laboy, 18, in his bed at York Hospital, where he was admitted after he voluntarily suspended his dialysis treatment for kidney disease. (Bill Kalina Photo)

[okarol]

Juan's story: 'One foot in each world' (video)
KATHY STEVENS The York Dispatch
Updated: 07/14/2009 11:30:56 AM EDT


Bill Kalina For video go to http://yorkdispatch.inyork.com/yd/local/ci_12832943?source=rss

No one knows what transpires between life and death.

There are theories that as death approaches, people linger between this world and another, as evidenced by conversations between the dying and those long dead.

The closer one gets to death, the more they sleep. Hospice workers believe this means the person has "one foot in each world," and that they are resolving the last of their personal battles before leaving this world.

Juan Viera Colon's culture believes that death is near when people begin to converse with people who already have died. And when the dying see or hear children whom others do not, death is imminent. Some Puerto Ricans believe that the young apparitions are angels come to earth to escort the dying from this realm
Nilda Garcia visits with her brother Juan Viera Colon while sitting at the foot of his hospital bed. (Bill Kalina Photo)
to the next.

Colon, 49, has been distracted in recent days by smiles and laughter of children that he tells caretakers are just outside his window, playing on the balcony of his sister's second-floor apartment in York City.

"He was talking last night,
saying someone had died," said Hector Garcia, Colon's brother-in-law and caretaker. "I asked (Colon) who told you that and he said the children. Then he said, 'Can't you see them outside playing?'"

Colon has kidney failure and decided June 10 to end dialysis, which would prolong his life by removing toxins from his body. He is not eligible for a kidney transplant because of other health problems including heart disease and high blood pressure.

Colon confirmed with his doctor Wednesday that he does not regret his decision, that he knows he will die because of it, and that his only desire is to return to his native Puerto Rico, which is an U.S. territory. Sunday he sat with his sister, Nilda Garcia, on a couch at her apartment watching television. He joked that day, even argued a bit with Hector Garcia.

Monday morning he seemed OK, but by mid-afternoon his eyes had become jaundiced, blood pressure soared and his heart beat erratically.

Nilda Garcia gave him a white rose to hold, telling him he could give it to his mother when they met in heaven. She's been waiting for him since her death Dec. 13, 2008. Colon cried, saying he was going to leave and told the Garcias of the parade of people he was seeing.

The Visiting Nurse Association has coordinated care-giving with the family and Colon's doctors, who have said his decision to stop dialysis, to die, is reasonable given his health issues. The Garcias opted to keep Colon at home, moved in a hospital bed and sold their bedroom suite to help pay funeral expenses.

Nilda Garcia has made the calls, rallied the family -- Colon's father, sisters, nieces and nephews -- who camped the night at her efficiency apartment.

Letting go: They've come to say goodbye, to let go, to hold his hand when he leaves this world. And gratifying as it is for the family to keep him at home, the stress of doing so takes its toll. In recent days, Colon's sleeping patterns have changed. He has remained awake long after the moon rises, becomes animated, talks to people and laughs with children no one else sees.

By 3 a.m., as Nilda Garcia readies for work at a blood-testing laboratory, Colon begins to wind down, turns onto his right side, pulling blankets to his ears and succumbing to a restless sleep.

She exits the door; her husband, Hector Garcia, sleeps off and on through the morning and until she returns at 8:30 or 9 a.m. The strain of the situation is evident on their faces, although both do their best to remain strong, to get through these days and watch Colon deteriorate.

They heed hospice workers' advice not to argue with Colon about what he says he sees, but simply to listen and do their best to accommodate his needs. They wear dark circles beneath their eyes. Their smiles have waned, and voices betray pitches one associates with fatigue and frustration and grief.

His decline:Colon hasn't held food down for days. He asks continuously for his 18-year-old niece, Abby Laboy; the two have a strong bond. She calms Colon, does what she can to hide pain she feels each time she sees him.

Laboy stayed at a friend's the other night, just had to get away. But she has been by his side during these last hours.

The Garcias witness the changes and do their best to hide stress and fear while they are with Colon. There are days, though, when the facade fades, tears come and any place to lean is appreciated.

"I'm so sorry, I'm sorry," Nilda Garcia says, tears streaming down her face, Colon curled in a ball upon his hospital bed.

He hasn't eaten; a nurse inserted a catheter to empty his bladder.

"I know, I know I have to be strong. I know."

How to help
The family of Juan Viera Colon asks the public's help in covering funeral expenses.

Donations to help may be made mailed or made in person payable to: Juan Viera Colon Funeral Fund, c/o M & T Bank, 21 E. Market St., York, PA 17401; contact M & T's customer representative Myrta Lopez-Flores to verify account information.

-- Reach Kathy Stevens at 505-5437 or kstevens@yorkdispatch.com.

http://yorkdispatch.inyork.com/yd/local/ci_12832943?source=rss

[Rerun]

Maybe we should all send money to Karol and then one check from IHD.

He is doing what I want to do but can't seem to find the guts.

[dwcrawford]

Funny isn't it... which ever way you choose with kidney failure, life or death, it takes unsurpassable courage...

Excellent suggestion, Rerun.

[okarol]

Juan Viera Colon meets the end on his own terms

KATHY STEVENS The York Dispatch
Updated: 07/21/2009 01:12:41 PM EDT

Three weeks ago, Juan Viera Colon danced inside his father's home, sharing with strangers his love of music, of family and details of a difficult decision to let go of this life.

Sunday evening Colon died, minutes after his brother Juan Jose Viera arrived from Puerto Rico to hold his hand, say goodbye.

Colon was 49 and the oldest of six siblings. He had lain unresponsive in a hospital bed inside his sister and brother-in-law's apartment since last Monday.

Sunday his blood pressure was normal, as were his temperature and pulse. But his chest rattled with every breath he took, paining his father, sisters and other family who have taken care of him in recent weeks.

His sister, Nilda Garcia, called their brother, Juan Jose Viera, in Puerto Rico about 3 p.m. and told him he must come, that Colon was waiting for him.

Viera agreed, allowing the family to scrape together money for his airfare, for a flight that would deliver him to Baltimore at 9:30 p.m. Sunday.

Works of mercy: He packed an overnight bag, and boarded a plane in San Juan, Puerto Rico. Colon's family, meanwhile, continued their bedside vigil as well as their weekend mission to raise money for Colon's funeral.

They'd held a yard sale on the sidewalk fronting the Garcia's North Pine Street apartment. They'd also placed several donation cans at area businesses in hope that folks' spare change would bring enough to pay for Colon's funeral.

So far, they've raised about $1,000 of the estimated $3,200 expense for a cremation casket, one-hour viewing and memorial service followed by cremation, according to Kuhner Associates Funeral Directors, a funeral home and crematorium on South George Street. The price, which is not yet fixed, would include publication of an obituary, death certificates and funeral director, who oversees services.

Colon's ashes will be returned to Puerto Rico for burial beside Colon's mother, who died last December.

Colon died from kidney failure. He had been on dialysis for about three years when he opted June 10 to end treatment.

His doctors said his decision was reasonable because although dialysis prolonged Colon's life, it did not improve his quality of life. Nilda and Hector Garcia said it was their job to support his decision, to make him comfortable as he died and provide a decent burial.

Several false alarms: They'd had several close calls in recent days, each time believing that Colon was hours, if not minutes, from death.

More than once Nilda Garcia telephoned family members, telling them "it was time," for them to say goodbye. That time came and went, as did sleepless nights beside Colon's bed.

Visiting Nurse Association employees also were on hand daily because Colon was in hospice care, meaning caregivers were to keep him comfortable, clean and pain free. Doctors would not resuscitate him as his health deteriorated.

The nurses heard about plans for Colon's funeral down to the suit he would wear. They'd begun to learn more about Puerto Rico, its people and culture. During the weekend, Nilda Garcia's aunt, Rosario Torres, cooked a traditional meal of pork, red beans and yellow rice, serving it to donors who stopped by the family's yard sale Sunday afternoon.

Juan Viera Sr., Colon's father, spent much of his Sabbath in the shade of a tree keeping an eye on sales. Hector Garcia played chauffeur to family members and greeter to patrons perusing sale items.

Nilda Garcia and numerous other family members divided time between Colon, the kitchen and the yard sale.

Waited for his brother: She said early Sunday that Colon was full of surprises, a fighter, a prankster who was not ready to go. But by 3 p.m. Sunday, she realized he was waiting for his brother, the one who'd never said a cross word to Colon.

To Colon, Viera was a rock, the mentor, and a matter-of-fact, reasonable man who was always, always there.

So when the family bought his ticket, Viera did what guys like that do: informed his wife, and his employer, that his brother needed him. Viera said he'd spent the flight believing that Colon had died and that his family did not want to tell him until he arrived.

Viera said he last saw Colon in January. Colon was still on dialysis, and still full of life.

But after Colon's mother died in December, he decided to move to York City where his father, sisters and extended family live. His health deteriorated, and he could no longer tolerate dialysis.

"He hated being tied down," Viera said in reference to dialysis, during which Colon was required to sit for hours on end. "He needed to be free and he was happy."

Viera arrived in Baltimore at 9:30 p.m. A cousin greeted him and drove him to the Garcias' North Pine Street apartment. Viera ascended the stairs, walked into the apartment and to his brother's side. Viera and the others gave what they could, gave themselves, as evident in their tears, their smiles and gentle touches.

Viera was the last to hold Colon's hand, to say goodbye.

Colon's breath slowed, then stopped.

-- Reach Kathy Stevens at 505-5437 or kstevens@yorkdispatch.com.

http://yorkdispatch.inyork.com/yd/local/ci_12875694?source=rss

[okarol]

Juan's story: A final goodbye (video)
KATHY STEVENS The York Dispatch
Updated: 07/24/2009 11:17:07 AM EDT

Some say the measure of one's love equals the depth of one's grief and pain.

That statement provides some comfort to Nilda and Hector Garcia these days when their gaze drifts to a corner of their second-story efficiency apartment, the space taken up for the past month by a hospital bed occupied by Juan Viera Colon.

The 49-year-old Colon died Sunday, a nurse pronounced him dead just before midnight. Funeral home workers arrived an hour later and removed his body. Days since his death have been difficult.

Nilda Garcia says she can't help but look at that corner -- the bed since has been removed -- to recall events of the past month, revisit the joy and pain of that long goodbye.

Colon had kidney failure and opted June 10 to end dialysis, a treatment that prolonged his life but did not improve its quality. He was not eligible for a transplant because of other health issues, including chronic high blood pressure and heart disease.

He'd been in York City for six months, moving here from Puerto Rico after his mother died last December. He moved in late June from his father's home to the Garcias'.

He's gone: They, along with his niece, Abby Laboy, 18, took care of him inside the North Pine Street apartment until he died.

In recent days the family has returned to life as it was, minus Colon but with the experience of the past month.

The Garcias repositioned their sofa, a 13-inch color television and portable trays to fill the void Colon left. They packed his belongings, placing them neatly in one of two closets inside the apartment.

They gave Kuhner Associates Funeral Directors the outfit Colon chose for his viewing, a light blue suit, white shirt and tie.

"And his dancing shoes, his brown leather dancing shoes," Garcia said. "He said he wanted to wear those just in case he met a girl in heaven, so he could take her dancing."

She, her husband and Laboy also had chosen clothing to wear Thursday night for Colon's viewing, the first

Juan Jose Viera, shown at his brother's viewing, made it from Puerto Rico on Sunday when his sister Nilda Garcia told him their brother, Juan Viera Colon, was holding on to life. (Randy Flaum Photo) of two before cremation. And although they'd known this day would come, it remained a difficult one filled with tears and smiles for the memories.
Thank you: Nilda Garcia dabbed cologne on her brother's body because "he liked smelling good."

Her conversation meandered from one thing to another, talking about the night he died and the importance of
that last shave given by a close family friend.

And those last moments Colon spent with his brother, Juan Jose Viera, who arrived Sunday night to say goodbye. Her thoughts jumped to days and weeks to come.

She's working on "Thank you" notes that are addressed and stacked neatly atop a table. She'll send those out soon to strangers who in past weeks have donated more than

Nilda Garcia stands over the casket of her brother, Juan Viera Colon, at a viewing on Thursday. A fund set up through M&T Bank and an anonymous donor has paid for his funeral expenses. Colon suffered kidney failure and opted to end dialysis. He dided on Sunda. (Randy Flaum Photo) $3,100 to cover Colon's funeral expenses.
Grief comes in stages, happens over the course of months and years. Visiting Nurse Association nurses said they'll be in touch with the family during the next year, helping when they can to provide emotional support in every way possible.

The shock of death seems to wear off after about three months, according to the VNA. By then, extended family and friends have resumed their lives and moved on. But close friends and family find themselves alone. The cards, letters and electronic well-wishes have stopped, but the memories have not.

Nilda Garcia says she can only take each day as it comes, but she knows at least that she kept her promise to Colon to return home.

Juan Jose Viera returns Saturday to Puerto Rico.

He, too, has a deep love for Colon, and will take his brother home, just as he has done hundreds of times before.

-- Reach Kathy Stevens at 505-5437 or kstevens@yorkdispatch.com.