When I first met social worker Paul Whittaker at the Maine State Prison in June, he was a worried man with a big challenge on his hands.
"Mondays, Tuesdays and Thursdays I end up basically spending my entire day calling nursing homes throughout the state of Maine to see if they have an available male bed, and if the staff is familiar with Huntington's Disease."
Susan Sharon: "And the answer usually is?"
Paul Whittaker: "They're full."
Whittaker says it's generally difficult to find a nursing home bed for a former prison inmate, let alone with someone with a genetic disorder as complicated as Huntington's. This is a disease marked by abnormal involuntary body movements called chorea. It also leads to cognitive decline and psychiatric problems. Patients' behavior can be difficult to control. There is no cure.
"People with Huntington's typically do not fit the nursing home profile. They are often young and physically challenging," says Nancy Patterson is with the Maine chapter of the Huntington's Disease Society of America. She's also someone with a personal experience dealing with the disease. Her mother died of it. She's been tested, and to her relief, found not to carry the gene that affects one in 10,000 people.
"It's generally very difficult for families to find placement in Maine for their loved ones with HD," she says. "They require more staff, specialized training and different physical accommodations."
So Paul Whittaker worked the phones hard. Brothers Brian and Wayne had just a few months remaining on their sentences for separate convictions involving arson and driving with a revoked license. To protect their patient privacy, MPBN is not using their last names.
At 46, Brian is the older of the two and his condition is more advanced. He's now in a wheelchair and unable to speak. Wayne, at 38, can still get around with a walker, and is able to speak on a limited basis. At the Maine State Prison the two men were cared for by a group of prisoners who volunteer in a hospice program. But they were living apart in the prison and unable to see each other every day. Now, they can.
""They do try to be together here. They do visit. They play bingo side by side. At the end of the day they seek each other out to say goodnight," says Irving Faunce, the administrator for the Penobscot Nursing Home near Northern Bay in Hancock County, where Brian and Wayne now reside.
Brian is in a skilled nursing bed. Wayne is in the assisted-living part of the facility. Faunce says he learned about the two men after hearing our story about them. He contacted Paul Whittaker, arranged for a couple of visits to the prison to meet the men, had an in-service training for his nursing home staff and took them both in about six weeks ago.
"They're very pleasurable, very pleasant people," he says. "Both of them are polite. They both get out and mingle with the population. They both eat in the dining rooms. So they've settled right in."
Susan Sharon: "So, if you had to give another nursing home advice about doing this, or a recommendation, what would you say?"
Irving Faunce: "Oh, I think it's the obligation of the long-term care system to provide nursing care for people who need it, and I think that if the prison is willing to look at their own inmates and make those determinations, I'm not sure that we're the only facility, but we'd be open to taking more residents."
Faunce says he hasn't had to hire more staff or make special accommodations for the brothers, mostly because the most active part of their disease is past, and they are less apt to be more physical or aggressive.
Normally, Nancy Patterson of the Maine chapter of HDSA would have met with their family members to offer resources and advice, or connect them with a Huntington's support group in Bangor. But in this case Brian and Wayne have no known relatives. So Patterson has started paying regular visits. Wayne has a private room with notes and cards from friends at the Maine State Prison pasted on his wall.
Susan Sharon: "How do you like it here?"
Wayne: "I like it."
Susan Sharon: "Are you glad to be here instead of the prison?"
Wayne says he likes the people at Penobscot Nursing Home and being able to spend time with his brother. He's also fond of the macaroni and cheese. Reached by telephone, Paul Whittaker says the situation couldn't have worked out better.
"If Irving hadn't been listening to the radio that night or the morning, this never would have happened," he says. "And I would have been faced with the dilemma of probably having to drop them off at the local hospital and just say, 'I don't know what else to do with them.'"
Whittaker says he plans to pay his own visit to the brothers next week. He's presenting Brian with the official paperwork that releases him from prison.