Alzheimer's: "we're not just victims of this disease"
(his recorded interview detailing his final wishes)
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Alzheimer's disease is fatal. It steals memories and personalities at its own pace, though most people die within eight years of diagnosis. The older we live, the greater chance we have of getting the disease. It's estimated that about one in every 8 people aged 65 and above has Alzheimer's. "I don't want to have to be force-fed or tube fed," he said. "If I can't eat I don't want anybody to feed me, because all it is doing is extending the pain longer. My family will have to see me suffering longer, I won't know who anybody is. I could get violent at times."
But it's not just a part of getting older. Sometimes, Alzheimer's clogs the brain of younger people. People like Butch Noonan.
"I'd like to be recorded so people will know that I'm of sound mind about my end of life issues because I have early-onset Alzhiemer's disease," Noonan said on a video shot in 2002. "And I'm 51 years old now."
Noonan made this video so his family would know what he wanted and what he didn't want when Alzheimer's left him unable to make those decisions himself.If there's one thing that Noonan and his six surviving brothers and sisters learned from their experiences with Alzheimer's, it's that the best way to face it is with planning and discussion. Family meetings to sort out financials and end of life choices often are fruitless once the disease has settled in.
"My mom was spoon fed for 5 years in a bed," said Noonan's older sister, Patty Barbato. "My mom would not have wanted to be spoon fed lying in a bed for 5 years. That wouldn't have been her choice. But Butch made sure nobody was going to spoon feed him. He didn't want to be kept alive. When his life was done, he wanted it to be done."
There were 10 brothers and sisters in the Noonan family, spread out over 22 years. They lost their mother, Julia, to what's called early-onset Alzheimer's when she was in her late 30s. Julie Noonan-Lawson, the third youngest, was still in Kindergarten at the time. Continue to read: wgbh.org
But it's not just a part of getting older. Sometimes, Alzheimer's clogs the brain of younger people. People like Butch Noonan.
"I'd like to be recorded so people will know that I'm of sound mind about my end of life issues because I have early-onset Alzhiemer's disease," Noonan said on a video shot in 2002. "And I'm 51 years old now."
Noonan made this video so his family would know what he wanted and what he didn't want when Alzheimer's left him unable to make those decisions himself.
"My mom was spoon fed for 5 years in a bed," said Noonan's older sister, Patty Barbato. "My mom would not have wanted to be spoon fed lying in a bed for 5 years. That wouldn't have been her choice. But Butch made sure nobody was going to spoon feed him. He didn't want to be kept alive. When his life was done, he wanted it to be done."
There were 10 brothers and sisters in the Noonan family, spread out over 22 years. They lost their mother, Julia, to what's called early-onset Alzheimer's when she was in her late 30s. Julie Noonan-Lawson, the third youngest, was still in Kindergarten at the time. Continue to read: wgbh.org
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