BENNINGTON -- Crescent Manor Care Center has had the state's only specialized care unit for Huntington's Disease up and running for several months now.
The unit, which opened in April, is the work of the nursing home, the Vermont Department of Disabilities, Aging and Independent Living and the Vermont Health Care Association.
Crescent Manor Administrator Claudette Werner said that state officials were looking to save Medicaid money by bringing people with certain conditions who were housed out of state back to Vermont. The people were being cared for out of state because Vermont facilities would not take them.
One of the groups of people were those with Huntington's chorea. Huntington's causes certain nerve cells in the brain to waste away. There is no cure. Werner stepped forward at a meeting and offered to serve the Huntington's patients.
Crescent Manor had four Huntington's patients at the time of the interview for this article, with another on the way.
"We've got them back home," Werner said. "When people came back home, the families can visit them now more often. They have gone and taken them to church. It's just been wonderful for everybody."
Huntington's chorea is a genetically inherited disease that usually strikes in middle age. Crescent Manor is taking people in the middle stages of the disease and will care for them the rest of their lives. There are both men and women with the disease at the facility, with the early 50s their
Nobody in Vermont would take these patients because "they're difficult residents, they're difficult with their personalities and impulsivity." In addition, they don't always mix particularly well with the typical nursing home resident, Werner said.
"It's a very complicated disease, very sad disease. People really need to learn how to deal with it," she said. "So we didn't take anybody until everybody was trained."
Crescent Manor made minor modifications to the 90-bed facility to house the Huntington's unit. Thenursing home added a backpatio that's fenced in and a cafe calledCrescent Club that is just for the unit's patients.
The "chorea" in the disease name is the shaking characteristic of the condition. "When they walk, they shake, they can't control it," Werner said. "Because of that chorea, they burn up a lot of calories. So they need like 6,000 calories a day just to maintain their weight.
"So the cafe is a place where we're constantly feeding them, making milkshakes, making special sandwiches and all kinds of things," she said. "Plus doing other things, like exercise programs and cognitive things to stimulate their brains. So a lot of things are going on."
Ongoing staff education programs about the disease occur twice a month, she said.
If a parent has Huntington's, the odds are 50 percent that a child will get the disease. Testing can reveal if someone will get the disease. "So you can watch your father disintegrate before you and your eyes and know that's your fate," Werner said. "So there's a lot of psych issues with it, a lot of emotional issues with it that really need special training to learn how to deal with them."
But there are bright spots. Along with the return of the patients to Vermont have been more visits by family and even one patient's rediscovery by local friends.
In one case, a husband who could only visit his wife once a month when she was out of state can now visit weekly.
"It's a big difference, and when (the Huntington's patients) have families aboard, there's a total difference with them, too," Werner said. "So we have had nothing but positive, positive reaction from these family members, they're so happy to get them home."
The challenge of taking the patients has also had a beneficial effect on the staff.
"I find new things exciting, and when you have a new program, that stimulates the staff you have. People like to learn and like to learn new things," Werner said. "And also that person's a specialist now in those kind of diseases or a specialist in the dementia program. I mean it takes special people to do some of this work."
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