Long term care options limited for northeast Nebraska woman
Kathy Hoebelheinrich has been paralyzed for 38 years. She contracted encephalitis when she was ten years old.
Most of us have people in our lives that have helped get us to where we are now. But, as we age we often worry about who will be there for us in the long haul.
The same is true for those with life-threatening medical conditions. This is a story about overcoming the odds and never losing focus on the future.
On a farm in Cedar County, Nebraska, there are big dreams. They don't involve next year's crops or even growing the herd. These dreams involve a home away from home.
Kathy Hoebelheinrich said, "It would mean a lot."
Hoebelheinrich has lived in this farmhouse her entire life. But at 48 years old, she knows the time has come.
"I know some day I won't be able to live here anymore," said Kathy. "I've been researching places that will take me, because of the ventilator, and there really aren't very many."
Kathy has needed a ventilator since she was ten. A day of boating on Lewis and Clark Lake near Yankton in 1975, followed by 4th of July fireworks, are the last things she remembers before life changed.
"And I wouldn't trade that day for anything. I just had a lot of fun that day," she said.
That's when Kathy contracted encephalitis from a mosquito bite. Complications during treatment left her paralyzed from the neck down. Her family has cared for her 24 hours a day, seven days a week.
Larry Hoebelheinrich said, "We're proud of the fact that we've done as well as we have."
Kathy's older brother Larry moved back to the farm several years ago to help.
"They didn't expect us to be able to take care of her, because she was on a vent and we, weren't at all trained," he said.
The farmhouse near Menominee, Nebraska was built in 1956 and not designed to accommodate a wheelchair. So over the years the family has changed a few things like expanding doorways and building a ramp.
Because of the care Kathy's 87-year-old mother Johanna has provided, along with countless neighbors and nursing students, Kathy has surpassed doctors expectations.
A huge part of that is her strong will and her love of life. And, even though there's comfort in her home, surrounded by all things Huskers, and her dog Max who never leaves her side, Kathy knows she won't be able to stay here forever.
Her dream is to have a home, near her doctors in South Dakota, where Kathy and others like her can thrive.
"You can have opportunities and it would be safe and we could have fun. And it would be a place like anyone else's house," she said.
The few options now, because of the ventilator, are nursing homes.
"It's not where I want to live the rest of my life," she said.
A life that so far has been surrounded by a family's love.
Johanna Hoebelheinrich tearfully said, "I hope she gets her wish."
A life that could continue to blossom with new friends.
"There's other people like me out there," Kathy said. "And they don't have maybe a family like I have that's taken care of me for so long,"
Dreams that can be shared, if wishes do come true.
Kristie VerMulm said, "If you move to South Dakota, I don't think they'll let you wear your Nebraska stuff."
"They do when I go to the hospital," Kathy laughed. "That's non-negotiable."
A spokesperson for the South Dakota Department of Social Services confirms that there are no specific group home facilities in the state that would be able to serve Kathy's specific needs.
However, there are specialized "in home" services for individuals with quadriplegia through Independent Living Center and South Dakota Department of Human Services.
One side note: One of Kathy's favorite pastimes is meal planning. She likes watching cooking shows and reading cookbooks so she can come up with new ideas for her family to try. She said her family doesn't get to eat anything twice. It's one and done, and you find something new.
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