ALS caring takes complicated fee on patient’s family

January 2, 2015 - als

“Don’t expostulate like a maniac,” Melissa Rocha needles her stepfather, John Costa, as they settle into his Hyundai and lift out of their expostulate in Attleboro.

He isn’t offended. It’s their tiny joke. You take your laughs where we can.

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John, Melissa, and Melissa’s father, Michael Rocha, are streamer to a Stoughton sanatorium to revisit Joanne Costa. Joanne is Melissa’s mother, John’s mom — and Michael’s former wife. The 3 of them, roommates now, together caring for Joanne. She has been in Kindred Hospital Northeast given 2005, longer than any other studious in a hospital’s history.

John has missed his daily revisit to Joanne usually once in 9 years. (There was a blizzard.) Michael and Melissa go with him 3 days a week.

Twelve years ago, Joanne was diagnosed with ALS, a on-going neurological commotion also famous as Lou Gehrig’s disease. Now she can’t pronounce or move, is nourished by a feeding tube, and relies on a appurtenance to breathe. She communicates by blinking her eyes.

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Joanne has told her counsel and John, her authorised guardian, that she wants to stay alive by all probable means. And while a exhausting years of caregiving have exacted a complicated fee on them — physically, emotionally, financially — they are all pitching in to honour Joanne’s wishes and keep her alive.

“In my opinion, we don’t wish to live that way,” says John Costa. “But she chose.”

‘They come together as a team. It’s a usually approach this could work. It’s really unconventional.’

Victoria Furci, on a kin who caring for Joanne Costa 

They are an doubtful cadre of caregivers, to contend 0 of roommates, and sanatorium officials contend they have never seen anything like it.

“They reside underneath a same roof. They come together as a team. It’s a usually approach this could work. It’s really unconventional,” says Victoria Furci, a amicable workman and executive of box government during Kindred, a long-term strident caring facility.

Michael, age 60, was disloyal from Joanne after she left him for John, yet stepped adult to assistance when she got sick. John, 61, her second husband, reached out after Michael mislaid his pursuit and invited Michael to pierce in with him. Michael and Joanne’s daughter Melissa, 36, lives there too, abandoning any disguise of a normal life to keep this formidable operation using smoothly.

Joanne’s story is some-more than usually unconventional, though. It’s about selflessness underneath duress, and about disorderly relations that have been righted. But it also illustrates something not always deliberate in a ardent discuss about a ethics of end-of-life caring — a grade of stamina and scapegoat compulsory for a family to support a terminally ill chairman who hangs on to life when complicated medicine can lengthen it.

Millions of Americans know that well. It is estimated that 65.7 million family caregivers yield support to people with disabilities or to aging desired ones, according to a non-profit National Alliance for Caregiving. They spend an normal of 20.4 hours a week providing care, and a need is usually approaching to grow as a Baby Boomers age. Yet a impact on caregivers can be brutal.

“It’s a really formidable topic,” says Furci. “I see people who wish to quarrel [an illness]. But we consider they don’t always know what a quarrel entails, even for themselves. we don’t consider they know a domino outcome of a illness process.”

john tlumacki/globe staff

Melissa Rocha sat subsequent to her father, Michael Rocha, while looking during photographs of her mother, Joanne Costa, with Melissa’s stepfather, John Costa, reflected in a counterpart of a vital room where all 3 live.


First stop, as usual, is Cumberland Farms, that is charity giveaway coffee all month. “If it’s for free, it’s for me,” Michael chuckles. Melissa prefers Dunkin’ Donuts, so that’s John’s subsequent stop.

The review turns to food. “I eat solidified foods,” says John, who doesn’t get to eat cooking until he’s home from a hospital, around 10 p.m. “I have no choice.”

“Here we go,” laughs Melissa.

“Get a violins out,” Michael says.

They lift adult during a hospital, on schedule, during 5:28 p.m., and John pulls into his common parking spot. Michael and Melissa take a stairs up. John takes a elevator, apropos increasingly resigned as he approaches Joanne’s room. “Holiday’s over,” he says underneath his breath.

Joanne, 59, is soundless, yet her room isn’t. There’s a constant, tinny sound of a ventilator’s automatic breaths, and a news on her wide-screen TV. There are family photos on each wall. Suspended from a roof is Joanne’s communication board, hereditary from an ALS studious during a sanatorium after he died, and mutated for Joanne. It lists 50 phrases that expect her needs. When someone recites a list, she blinks during a right phrase. One blink for “yes,” 0 blinks for “no.”

“I can’t breathe”

“Deep suction”

“I have an itch”

“Feeding tube hurts”

“Call John Call Melissa”

John pronounced he hasn’t taken a vacation in 12 years, and has no skeleton to. He wouldn’t be means to relax. “The thing is, a lady is in my head,” he said. “I adore her.”

Lying, as ever, on her back, Joanne bears tiny similarity to a lady in a photos — a sprite-like blonde vacationing with her family during Disney World or wearing reindeer antlers on her head. Now her physique is motionless, her face swollen, her feet contracted. All she can pierce are her eyes, that follow her family members around a room. She has singular use of her facial muscles, usually adequate to frown.

“You’re upset? For what?” John asks, yet he knows a answer. Deep suction. Joanne, he says, is disturbed that secretions are building adult in her lungs. But a some-more mostly he suctions, a larger a risk of vitriolic a tissues. He tries to extent it to each half hour, yet it seems to make her angry, that disturbs him.

“You wish to be suctioned again?”


“One some-more time, no some-more faces,” says John, who calls her “Twinkie.” “That’s it.

Wordlessly, they trip into their routine. John washes Joanne’s hair with dry shampoo. Michael changes a H2O in a dish and disinfects a table. Melissa flips over a page-a-day calendar and puts divided a purify nightgowns that John washes each night. They make tiny talk. Today’s large news is that a sanatorium seems to have altered a code of toilet paper.

Three hours pass this way. Sponge bath. Suction. Rearrange a bed covers. Suction. John checks Joanne’s physique for bed sores. Melissa shaves her mother’s legs, afterwards gets mischievous: “Ma, do we wish me to get John with a shred cream?”


Melissa smears it on his face. John, dripping, leans over Joanne. “You consider this is funny?”


John Tlumacki/Globe Staff

John, dripping, leans over Joanne. “You consider this is funny?” Blink.


Why Joanne walked out on her 19-year-marriage to Michael and left for a year with John is something usually she could contend for sure. But now there are usually a versions that other people tell.

“She never pronounced anything,” says Michael. “I don’t know what happened. She filed for divorce.”

They’d grown adult together in Attleboro, antiquated in high school, and were married during 18, with Joanne pregnant. Three years after Michael Jr. was born, Melissa arrived. Michael says she’s “the bursting image” of her mother, a energetic lady who hardly surfaced 4 feet 11 inches.

“We lived a tough life, her and me,” says Michael, who worked during a pellet indent after they were married, unloading complicated bags of animal feed, and after became a flare lift user for a shingle association in Millis.

Joanne worked nights for a Balfour valuables company, inspecting rings. “I can tell we one thing — that woman, she worked,” says Michael, a warm, splay male with mutton clout sideburns and silver-gray hair that curls during his shoulders. He grew adult on a farm. “I give her a lot of credit. She helped on my family’s farm, feeding a cows, putting out hay.” In a winter, when he plowed sleet to make additional money, she went with him, operative all night.

Joanne was a family’s core of gravity, full of appetite and unsentimental jokes. She was a supernatural home organizer, holiday celebrator, and knickknack collector. And she approached housework with a vengeance. She was also steely-tough, with a temper. “When she hollered, we moved,” Michael says.

He is deceptive about given things went green solely to say, “I ain’t blaming her for nothing. It’s all my possess fault.”

It was during Balfour that Joanne fell in adore with John Costa, an enchanting valuables polisher with comfortable brownish-red eyes who comes from a Azores segment of Portugal. Tattoos on his arm anxiety an outlandish past in a Portuguese military; he served for dual years in Angola in a 1970s, during a polite war.

A talkative man, John is uncharacteristically still about what happened in 1993, solely to contend he and Joanne went to North Carolina to wait out a “complicated” tiny city repercussions of their relationship. One year after — usually as unexpected — they were back.

They married in 1995. John had a array of jobs before alighting his stream one during AB Group, an Attleboro jewelry-manufacturing association where he does china polishing. Joanne worked as an examiner for V.H. Blackinton in North Attleborough, that creates badges and medals.

There was still a chill between Joanne and Michael, though. “She hated me for a longest time,” he says. “She wouldn’t even demeanour during me.” But slowly, a ice began to thaw.

“One day, she asked me if we could be friends,” says Michael, and that was that. “Whatever happened, happened. we usually got over it.” It took longer for Michael to comfortable adult to John, yet eventually that happened, too.

“[My parents] were improved off as friends than when they were married,” says Melissa, who continued to live with her father “because she no like my rules,” pronounced John, who speaks a heavily accented English. “Portuguese manners is tough.”

Eventually, it began to feel normal. Joanne and Michael went for unchanging dinners together during Dairy Queen or a pizza parlor. Joanne and John took vacations in Falmouth and during Disney World. But about 2001, things started to go wrong for Joanne. She had difficulty retaining a automobile steering wheel. Then she couldn’t spin a key. She forsaken things. “It strike us so fast,” says Michael. One day she fell in a restaurant, “out of a blue,” Melissa recalls. “She satisfied she couldn’t travel anymore.”

She was diagnosed, in 2002, with ALS. “She took it flattering bad,” Melissa says. “We all did.”

The family had perceptibly listened of this engine neuron disease, let alone a apocalyptic consequences. ALS affects a duty of nerves and muscles, and gradually causes weakness, flesh wasting, and paralysis. The life outlook of ALS patients averages dual to 5 years from a time it’s diagnosed, according to a ALS Association, yet it’s rarely variable. “It could be 6 months, it could be years,” John says he was told.

In Joanne’s case, stoppage changed quickly. Perhaps intuiting what lay ahead, she done some vital decisions. She asked John to take her to a La Sallette tabernacle in Attleboro to buy a cross. She taught him how to compensate a bills, that she’d always taken caring of given he has difficulty reading English. She educated him that if anything ever happened to Michael or Melissa, she wanted John to assistance them.

For 3 years, Melissa cared for Joanne during a day, with Michael’s help. John took over after he got home from work. When Joanne mislaid a ability to swallow, she had a feeding tube inserted. But in 2005, after critical respirating complications, it became transparent that a usually approach she could stay alive was with a ventilator that would breathe mechanically for her.

“We knew it was time for her to [be hospitalized,]” says Melissa. “She knew she wouldn’t come back.” She was certified to Kindred Hospital Northeast, one of usually 23 long-term caring comforts opposite a state providing ventilator care, according to a Office of Health and Human Services.

About 5 years ago, Michael got his possess bad news. The association he worked for was closing.

In brief order, he mislaid his job, his car, and a townhouse he common with Melissa. “[Michael] was in bad shape,” says John, who lives paycheck to paycheck himself. “I said, ‘I don’t wish to see we guys on a street. we have a room for you.’”

John tlumacki/globe staff

In his wife’s sanatorium room, Costa cried out of disappointment while stuffing out medical forms. “Lots of times, we say, ‘God take me away,’ ” he said.


By 8:30 p.m. during a hospital, everybody seems to be tiring. Each of them has acknowledged, during interviews, how tough this is. The hardest thing? “All of it,” says Melissa.

Michael, who has his possess health problems, worries that Melissa does not have a job. Yet he’s blissful they’re all concerned in Joanne’s care. “She would do a same for us, we would think,” he says.

John says he still feels happy each day when he sees his wife. “But sometimes, lots of times, we say, ‘God take me away.’ we don’t caring no more. It’s everything. I’m tired, I’m hungry. Her, that way.”

He cried one day while doing paperwork. Joanne’s medical costs are paid by Medicaid and MassHealth, yet he signs her monthly Social Security checks over to a hospital. (Under sovereign Medicaid law, MassHealth members are compulsory to minister to a cost of their care. MassHealth pays a sanatorium $837.23 per day for a ventilator-dependent MassHealth patients.) It upsets him that Joanne worked so tough for this money, that she will never get to enjoy.

It’s time to start a expostulate behind to Attleboro. John has to be adult during 4:30 a.m. for work.

He adjusts a rope on Joanne’s front that will switch on a call light with even a smallest transformation of her face. He kindly adjusts her fingers on a soothing blanket.

“All right, Twinkie, we gotta go,” he says. “One final suction.”

As always, Michael and John leave initial so Melissa can spend a few moments alone with Joanne. She whispers to her, and kisses her goodbye.

“Think happy thoughts,” she tells her mother. “Think of bunnies and rainbows.”


John tlumacki/globe staff

John Costa scratched a leg of Joanne Costa, his mom given 1995. The integrate met when they worked during a Balfour valuables company, and his fingernails are mostly blackened by his stream pursuit as a china polisher during a opposite company.

Linda Matchan can be reached during

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