People with few places to go find hope
ALS patient on ventilator wants to be here for his children

By Robb Murray
The Free Press



Joe Winter has battled ALS for 11 years. For much of that time, his parents, Vernon and Mary Winter, have cared for him. There hope is that, within a few weeks or months, Joe will be able to move to Hillcrest Health Care Center, which has taken steps to accept residents such as Joe.
John Cross / The Free Press




MANKATO -
The question to Joe Winter is simple: Why, given the fact that you can't walk, talk, feed yourself or even move, do you choose to live like this?

He answers the only way he can. Slowly. One letter at a time. Typed painstakingly. Using the slight movement he has left in his chin to guide a cursor across a computer screen.

"I ... chose ... to ... live ... like ... this," he typed as the constant churn of a ventilator fills the room like background music, "... because ... I ... love ... my ... children ... and ... I ... wanted ... to ... be ... here ... for ... them."

Eleven years ago in April, Winter was diagnosed with ALS, or Lou Gehrig's disease. By December of that year, he was in a wheelchair. Not long after that, he'd lost control of his body.

Today, the only parts of his body he can move are his eyes, the kind that follow anyone who walks into the room, and his chin. He requires 24-hour care. Almost every minute of his life is spent in a room with a fish tank to remind him of the hobby he used to love, pictures of his children, who visit him weekly, an air purifier, a ventilator, a television, VHS tapes, a bay window looking up a ravine hill.

For the most part, between home health care workers and family, he's monitored constantly. But Winter's situation is getting more urgent. His parents - Vernon, who soon will turn 90, and Mary Winter, who soon will turn 80 - need help.

The home health care workers, the Winters say, do a fantastic job, but there are times when the agency they work with can't provide a worker.

Luckily, the family has a ray of hope.

Hillcrest Health Care Center in Mankato appears to be coming to the rescue of Winter and possibly other people in similar circumstances.

The facility has dedicated one of its wings to caring for people such as Winter. As soon as they can hire additional nurses, Winter will move to Hillcrest.

"We are going to admit Joe one way or another," said Doug Williams, Hillcrest administrator.

Roadblocks

Several years ago, Winter made a choice that most people with ALS don't make. He chose to live.

ALS attacks the body's ability to function, including its ability to breathe. People can live longer if they choose to be on a ventilator, but the vast majority of people with ALS do not. They instead choose to die.

Winter is in the minority. And today he lives with his parents in their James Avenue home.



His parents and other members of his extended family take part in his care. And for the past few years, Vernon and Mary Winter haven't even been out of Mankato. Vernon leaves the house occasionally to pick up medication, groceries or eye drops. But for the most part, they stay home with Joe.


Their ability to do that, however, is waning, especially for Mary, who fell ill with polio in her younger years and is now suffering from some post-polio troubles that make some of the tasks of Joe's care difficult.

Summing up their experience, they say, is difficult. They remember their neighbors, who had a child stricken with multiple sclerosis.

"When we heard he had MS, we said we wouldn't be able to take it," Vernon said. "And then Joe got something worse."

When asked if they envisioned their golden years like this, Vernon pauses, appears to tear up a little, and then offers this humble response: "No ... But we're serving a better purpose here."

Hillcrest preparations

There is no place in south-central Minnesota that can take in someone with Joe's acute medical needs. The nearest facility is in the Twin Cities. There is also a facility in Rochester.

Joe, however, wants to stay in Mankato. This is where his two children, who attend West High School, live. His parents and siblings and friends also live here. Why be alive, he reasoned, if he can't be near the people he loves?

"I have two very precious children who live in Mankato who I want to remain close to," he wrote. "Likewise, my parents want to stay close to me ... They helped me through many tough times both as a child and as an adult.

"In the first five years of my convalescence their love and support made it infinitely easier for me to deal with the constant loss of abilities and the necessity to adapt to my handicaps as ALS took way my power to walk, eat, talk and even breathe."

Williams heard about Joe's case, and the case of another ventilator-dependent individual in town. He talked to Joe's family and gave them his word he'd do what he could to get Joe a bed and proper care.

He then began looking into what it would take to make it happen.

Williams said he called Bethesda Hospital in the Twin Cities, one of the few facilities in the state offering this type of care, and asked whether it would be worth Hillcrest's time and investment to dedicate part of its facility to people such as Joe.

"Without blinking an eye," Williams said, "he said ‘yes.'"

Nursing shortage



Hillcrest moved 40 people out of one of its wings and relocated them. They purchased a generator to guard against power outages. All that's left is to hire the additional three or four nurses they'd need to start taking in residents.


But Hillcrest is a nursing home, and nursing homes don't typically attract nursing applicants the way hospitals do.

Eventually, though, Williams says, they'll hire enough nurses and be able to open their new wing for ventilator-dependent residents.

"I saw Vern in church the other day," Williams said. "He came up to me, tears in his eyes, and said I want to thank you so much for keeping your word ... It's my goal to bring them relief, to bring them peace. We are not going to stop until he is in here."
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