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Brothers' Keepers: End of Life Care in the Maine State Prison, Part 3
06/26/2013   Reported By: Susan Sharon

Hospice care typically involves addressing a patient's physical, spiritual and emotional well being at the end of life. But at the Maine State Prison, trained hospice volunteers - who are also inmates - are helping two brothers live and cope with Huntington's Disease. Huntington's is a hereditary, degenerative brain disorder that slowly diminishes a person's ability to walk, talk and reason. And in the final part of our series, Brothers' Keepers, Susan Sharon reports on the unusual challenges facing everyone involved.

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Brothers' Keepers: End of Life Care in the Maine Listen
 Duration:
4:47

Bro keep 2

It's morning rec period the Maine State Prison, where several inmates have gathered for a rehearsal of the prison hospice band. They've also brought two brothers, both in wheel chairs, in to hear the music, and to visit with the other prison hospice volunteers. Both have Huntington's Disease. And both are difficult to understand.

Wes Knight: "You like cookies or flowers? Which one do you want?"
Brian: "I like both."
Wes Knight: "Both? You like both!"
Wayne: "Ahh, both!"

Brothers Brian and Wayne, whose last names are being withheld to protect their patient privacy rights, are both serving time at the prison for separate offenses. Brian, who is eight years older than Wayne, has been in for about 10 years for an arson conviction. He's scheduled to be released in November.

Wayne will be released just a few months later. He was convicted of driving after his license had been revoked. Hospice volunteer and fellow inmate Wes Knight says Brian's disease is more advanced.

"It's hard but you really listen - after being around him quite awhile you'll understand what he's trying to tell you," Knight says. "We've made him a little plaque so he can point to pictures like 'doctor' or 'coffee' or whatever he needs he'll be able to point to it as he deteriorates."

Knight says he feels a special kinship with Brian and Wayne because he is also serving time in prison with his brother for a murder conviction.

"Once I met these brothers I put me and my brother in the same position: If that was us I'd want somebody to take us out, you know?" he says. "Why we are in hospice? This is the reason right here."

According to the Huntington's Disease Society of America, the HDSA, more than 30,000 people in the United States are officially diagnosed, with another 250,000 at risk. Those whose parents have HD have a 50 percent chance of inheriting the gene that causes the disease.

Symptoms usually appear between the ages of 30 and 50, and progress slowly. Eventually, a person with Huntington's becomes totally dependent on others for care. Until recently, both Brian and Wayne were living in the prison infirmary. But then, for the sake of his well being, Wayne was moved to the mental health unit.

Bro keep 4"One of the issues I think the infirmary (right) has found out is that at times it's difficult for Wayne to interract with Brian," says Paul Whittaker, the brothers' caseworker at the Maine State Prison. He says Wayne still has enough cognitive ability to see that the two of them share the same fate.

"Wayne can see what Brian is going through, knowing full well he's got the same disease," Whittaker says. "This is what he'll eventually go through,"

Whittaker and the hospice volunteers say they knew nothing about Huntington's until they met Brian and Wayne, who were both able to walk and talk when they first arrived at the prison. But the past few years have been a sharp learning curve. Hospice volunteer Steve Carpentier say one of the challenges of the disease is that it causes unpredictable behavior, including mood swings.

"Brian has he mind of a child," Carpentier says. "When you take something away he'll get up. He can barely walk. He's very strong and he gets mad and he bangs on his window. Now when he bangs on his window his brother is over in another room. His brother, in defense, he gets mad. He went through three TVs in four days he smashed."

Steve Carpentier, hospice volunteerCarpentier (left) says the hospice volunteers continue to rotate shifts and spend time with both brothers together as often as they can. But he says being present for the brothers, as they watch each other slowly disappear, is tough. At the end of every visit the brothers shake hands and cry when they say goodnight.

But they will have to say a longer goodbye when Brian is released this fall. Whittaker has been working unsuccessfully for weeks trying to find a Maine nursing home to accept him. "I basically got until mid-November to find a placement for him. If nothing happens I don't know what I'm going to do," Whittaker says.

Nancy Patterson of the Maine Chapter of the HDSA says it's not easy to place Huntington's patients, and that's something her group is working to address.

"In Maine, nursing homes typically do not take someone who has Huntington's," she says. "Many facilities don't know about it and are uable to take care of the people who have it. People have to go out of state, and it's a long, arduous process to prove to the state that there is no place for people with Huntington's."

Brian and Wayne have already lost several family members to the disease. But at the Maine State Prison, inmates like Wes and Kevin Knight, Steve Carpentier and the other hospice volunteers have taken their place as the brothers' keepers for as long as they need care.

Photos:  Susan Sharon

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