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Disabled North Fort Myers man gets last wish - to die in familiar surroundings

Nov. 2, 2013
LARC Resident Jimmy Funk's Passing
LARC Resident Jimmy Funk's Passing: Jimmy Funk, a developmentally disabled adult residing at LARC's North Shore Residence group home, passed away Saturday, October 26 from stomach cancer. Video by Sarah Coward/
James Funk reads the newspaper with a magnifying glass at home in North Fort Myers a few weeks before he died. / Photos by Sarah Coward/
James Funk, in front of grandmother Myrtle, sports glasses and a fedora in a vintage snapshot from his younger days on display at his memorial service.

About LARC

• Since 1954, LARC Inc. has served Lee County residents with developmental disabilities. LARC offers vocational programs, homes, education and more to some 300 people.

• Learn more, help out: 334-6285; online:

By the numbers

People with developmental disabilities in Lee County: 26,000
In the U.S.:
2.2 million
Life expectancy for people
with developmental
disabilities in the 1930s:
In 2013:
More than 66 years
Sources: LARC, U.S. Census,
The News-Press research

James Funk likes to accessorize, wearing a number of bracelets and a hat while reading the paper at the LARC group home for developmentally disabled adults in North Fort Myers Wednesday, October 2. / SARAH COWARD/THE NEWS-PRESS
James Funk takes a Cincinnati Reds cap from his brother, Mike Funk.
LARC group home caregiver Laurie Shears, left, hugs one of Jimmy Funk's housemates, Jerry Hill, during Jimmy's memorial service Wednesday in Fort Myers. Funk, a developmentally disabled adult living in a LARC group home, 72, passed away Saturday, October 26 from stomach cancer. / SARAH COWARD/THE NEWS-PRESS
Jimmy Funk as a young boy with his mother, Virginia. / SARAH COWARD/THE NEWS-PRESS
Michael Funk, brother to developmentally disabled cancer victim Jimmy Funk, laughs as friends and loved ones stand up and share their stories at Jimmy's memorial service Wednesday in Fort Myers. / SARAH COWARD/THE NEWS-PRESS


In the butter-colored room, there’s a crackling faux fireplace and a Caloosahatchee view.

A basket of glitter-dusted pears and pomegranates rests near the biggest recliner, as cartoons flicker on the far wall.

Late afternoons, whatever’s bubbling in the slow cooker for supper scents the air: pork loin, carrots, sweet potatoes.

A stage designer could hardly dream up a more comfy, ordinary room. Yet what happened here last month was extraordinary:

James Funk, 72, of North Fort Myers, Fla., passed away peacefully on Saturday, Oct. 26, 2013, following a lengthy illness.

That sentence would be unremarkable in most obituaries.

Dying at home is a common wish — one hospice can often help come true. But what happens when the dying person has developmental disabilities and lives in a special-needs facility?

A few decades ago, after being diagnosed with terminal stomach cancer, a man like James Funk — with the abilities of a second-grader and no nearby family — would likely have been hospitalized or consigned to a nursing home.

His story didn’t end that way, though, thanks to a corps of people who made sure he spent his final days at home. Instead of wired up in a hospital bed, Funk died in his ivory recliner, as the birds he fed every day fluttered past his window.

Uprooting not an option

Until recently, people like Funk rarely survived past their 40s, so most families never had to consider old age care.

“My sister has Down syndrome,” says Roger Bradley, executive director of LARC, the Fort Myers-based nonprofit that runs the North Shore Residence where Funk lived, “and when she was young, they told my parents, ‘Don’t worry — she’s not going to live past 20.’ She’s now 58 and my mother took care of her until after her 89th birthday. So we’re going to be seeing this more and more.”

When Connecticut resident Mike Funk learned his big brother, James, had terminal stomach cancer last year, he despaired. Born in West Virginia, James came to North Fort Myers with his parents as a young man, then moved to the LARC home after they died. The brothers had always been close. Mike would fly down regularly to visit, but knowing James was in LARC’s care was a tremendous comfort. He dreaded the notion of uprooting him.

“He’s someone with about the intellectual capacity of a 7-year-old,” says Funk, “though it’s more complicated than that. How could we explain that he had to leave his home and go somewhere strange? I know he wouldn’t understand why — and it would be terrifying.”

More than terrifying, it might well have been prematurely fatal, says Deborah Linton, CEO of ARC of Florida, a nonprofit serving people with developmental disabilities. It’s called “transfer trauma.”

“When people living in a residential facility are suddenly moved to a nursing home, it can be seriously traumatic, and they often don’t survive,” Linton says.

She cites what’s known as the Hodges case, when about 20 residents were moved from their longtime homes into a Jacksonville institution called the Hodges Boulevard Cluster Home. “In less than a year, nine of them had died,” she says. “Imagine not understanding where you were — or why everyone and everything you’ve known the last 25 years is gone.”

Just like everyone else

The last thing Mike Funk wanted was to tear his brother from his home of the last quarter-century. But could it accommodate terminal illness? Because of Hope HealthCare Service’s hospice program, the answer was yes.

Though the Fort Myers nonprofit offers inpatient care, it also provides in-home services, dispatching nurses, therapists and technicians to help families tend their dying.

“(Serving people with developmental disabilities) is not new to us, but I think the awareness of what we can do has not been there,” says Hope CEO Samira Beckwith. “Until recently, people weren’t willing to talk about their end-of-life care... It’s remarkably significant that he had a caregiver who was able to listen to his needs and make that brave choice for his loved one — and then that we could support that choice.”

A Hope nurse regularly visited the house Funk shared with three other men and a small staff of caregivers in a quiet, oak-shaded neighborhood. Until Funk got sick, the housemates worked or volunteered during the week, then came home for dinner, bowling once a week, enjoying the occasional movie at a theater — “normal family stuff,” says home manager Laurie Shears. “Normal” is a word she says often when talking about the men she calls “the guys.”

“A lot of people are uncomfortable — even scared of them, like they’ll catch what they have if they get too close,” Shears says, shaking her head at the absurdity of that notion. “They are just like everyone else, with the same hopes and wishes and needs. They process some things more slowly, or they may communicate differently, but they’re just like us (and) everyone’s personality is different.”

And in James Funk’s case, that personality was a delight, says Shears. Independent, strong-willed and determined, Funk memorized Lee County’s bus routes, crisscrossing the region. When he wasn’t on the bus, he rode his bike, a familiar figure pedaling his three-wheeler over the Edison Bridge — in a raincoat and big rubber boots on wet days.

“He was our alpha male — the one who told everyone what to do and how to do it.” But his directives were given with affection and caring, she says, an observation that was echoed at Funk’s memorial.

“He cared about the sick, he cared about people’s jobs, he cared about people’s children,” says Funk’s pastor, Lia Willetts of Christ United Methodist Church. “At prayer circle, he’d ask, ‘God, please take care of my Mom in heaven.’”

He collected pocketknives and thermoses, corncob pipes and cowboy boots. Always nattily turned out, Funk loved to accessorize with bracelets, bow ties, vests and rings.

“He’d ask me, ‘Pastor Lia, is this a nice outfit?’” even though he knew it was, Willetts says. He volunteered tirelessly at the church’s pumpkin patch, rummage sales and suppers.

When Funk’s brother visited a few weeks before he died, he delighted him with the gift of a Cincinnati Reds’ uniform (baseball was another love). He’d dropped a lot of weight since he got ill, and Shears’ husband had been giving him clothes, but this was an entirely new outfit.

Curled in his recliner, Funk scoured ads in The News-Press as his brother chatted with him about the week’s activities — an early-bird dinner and karaoke at Fort Myers’ Oasis restaurant, an afternoon stroll through Centennial Park. Funk showed off a favorite ring, fashioned of an antique silver fork. It was a companionable, brotherly exchange — blessedly so, Mike Funk says.

It was possible thanks only to the staff’s willingness to make it so, and Mike got choked up thinking about it. “The people here are angels — they aren’t in it for the money.” (Managers make around $30,000 a year; caregivers between $8 and $12 an hour, Bradley says.) “They told me they’d stay with Jimmy around the clock so he’ll never have to be alone,” Funk says. It was far beyond their call of duty, but they did it without hesitation, he says. “They’re so loving and caring it’s overwhelming.”

Yes, Shears admits with a rueful smile, that’s just an occupational hazard.

“You fall in love. I love these guys — it’s that simple,” she says.

“And with James, I wanted him to have a normal life until the end. I didn’t want him to be afraid. And he wasn’t.”

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