Bylon Alexander, A Voice For The Disabled, Died
MICHELE NORRIS, Host:
Last December on this program, we told you about the growing number of young people living in nursing homes and about Bylon Alexander, a 24-year-old woman who dreamed of getting out of her nursing home.
Well, last Friday night, she died, and NPR's Joseph Shapiro has this remembrance.
JOSEPH SHAPIRO: Bylon Alexander was just six years old when she had a stroke. For years, her mother took care of her at home, getting Bylon out of bed, dressed and ready for school.
Then, a couple years ago, when Bylon was 22, her mother was hospitalized. Bylon went to live in a nursing home in Athens, Georgia. It was supposed to be a short stay until her mother got better.
Last year, we met Bylon at a conference. She was usually pretty shy, but from her wheelchair, she got up the nerve to tell a crowd of strangers about what happened.
BYLON ALEXANDER: Just recently, my mom died.
SHAPIRO: That left Bylon with no home but the nursing home.
ALEXANDER: I don't have anyone to take care of me, so I think I'm stuck where I'm at.
KATIE CHANDLER: She didn't like it. She didn't have anyone her age to interact with. There weren't really any activities designed for 24-year-olds.
Katie Chandler works for a legal group called the Georgia Advocacy Office. She helped start a program to get children and young adults like Bylon out of nursing homes.
CHANDLER: She had talked about once she got out, going back to school, getting involved in her community, even possibly having a job.
SHAPIRO: Last winter, the State of Georgia approved Bylon to move into a group home or her own apartment with an aide to provide care. But in January, Bylon got pneumonia. She had trouble swallowing. There was surgery to insert a feeding tube, but that area got infected. Two weeks ago, doctors operated, but the infection had spread too far.
Two days before Bylon Alexander died, Katie Chandler went to see her in the hospital. Even when Bylon was on a breathing tube and could no longer speak words, she still laughed.
CHANDLER: And even with being intubated, she was laughing, which seemed painful being intubated. I think it was a part of her spirit. I think it was who she always was.
SHAPIRO: The administrator at the nursing home didn't want to speak on tape. But she says Bylon got good care there, that she was happy and that the staff treated her like a kid sister.
Bylon Alexander, still short of her dream to leave that nursing home, was 24 when she died.
Joseph Shapiro, NPR News.
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