Facing Alzheimer's: Planning For Loss

By Sean Corcoran

June 21, 2011

The Alzheimer's caregivers’ story is often one of sustained stress, exhaustion and isolation. Rates of depression, poor nutrition and chronic disease among caregivers of Alzheimer's patients are higher than for non-caregivers. In our special series, Facing Alzheimer's: The Caregivers' Challenge, Sean Corcoran explores the challenges of caring for Massachusetts' more than 120,000 Alzheimers' patients.

In a video made in 2003, after he had been diagnosed with Alzheimer's, Butch Noonan outlines his final wishes about his death. He said he wanted to decrease confusion about what his caregivers should do as his condition worsened. 

SANDWICH, Mass. — 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.

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.

Noonan siblings, Cape Cod, family photo
The Noonan siblings. Back row, from left: Butch Malcolm Noonan; John E Noonan III; Bob Noonan Preskenis; Eryc Noonan. Front row, from left: Maureen Noonan Preskenis; Patty Noonan Barbato; Julie Noonan Lawson; Kathi Noonan Korobko; Fran Noonan Powers. (Photo courtesy of the family)

"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."
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.
"We actually thought that with the death of our mother we were burying the disease. We were very happy having that part of our life over with," Noonan-Lawson said.
But Alzheimer's returned, and it took their mom's twin sister. After scientists discovered the gene mutation that leads to early-onset Alzheimer's, the Noonan's were told they each had a 50 percent chance of inheriting the dominant gene. Sister Maureen died first, the same day sister Cathy died of cancer. It's not known if Cathy had the Alzheimer's gene or not. But Maureen did, and sister Fran was next. When her symptoms began to appear, Julie says Fran was determined to control the disease as much as she could. She was not ashamed.
"She ended up going around," Noonan-Lawson says. "She went to her bank, she said, 'I have early-onset Alzheimer's and I am telling you this because you know I come to this bank, if I forget, if I forget my pin number, I might need support, and I am just letting you know up front.' She went to the school, she told them, 'I have Alzheimer's. I don't want to miss meetings. I want to be engaged, but I have a disease where I will forget so I am asking for support.' She went to the orthodontist. She went to he pediatrician -- she went every where she knew where she might need support."
Most of the Noonan siblings have been tested for the early-onset Alzheimer's gene. Julie, John and Patty, who were interviewed for this story, do not have it, so they cannot pass it along to their children and grandchildren. But the next generation, the children of Fran, Butch, Maureen and perhaps even Cathy, still are at risk.
"It's a tremendous relief," Noonan-Lawson says. "But it's also very difficult to think about the individuals who don't have the same blessing in my own family. My other nieces and nephews, who may have to face it that now don't have their mom and their dad, and they may have to face it. You can't leave that, even though you're relieved that your own direct family doesn't have to deal with it. You can't leave the rest behind."
Ten years ago, the Noonan siblings sat down for a family meeting to discuss what they wanted to happen at the end of their lives, and who they wanted to make decisions for them. There's tremendous value in learning how they made their decisions and the discussion that went on. For example, while surrounded by his siblings and their spouses, John Noonan said he didn't want his wife Donna to be his healthcare proxy. She started to cry.
"And I felt like crap," John Noonan said. "But my reasoning was very sound. i didn't want her to be my healthcare proxy because my wife loves me. She's not going to let me go. She's going to want to spoon feed me. She's going to want to keep me alive. And I didn't want an insurance company, or one of my siblings coming back to my wife and saying, you killed him, you wanted the insurance co. and you killed him, or my kids to say that or anyone."
Not long after the family meeting, Butch Noonan made his 36-minute video. John was his healthcare proxy, and he considers it a final gift from his brother.
"That video that Butch made was so beneficial to me," John Noonan said. "I probably went back and viewed that video a dozen times in the last 3 yeast of Butch's life, because I wanted to make sure I was doing just what Butch wanted. Not just what I remembered hearing. But I watched the video that he made 10 years earlier, saying what he wanted."
Patty Barbato says the video also made clear Butch's wishes to people outside the family. He did not want a ventilator. He did not want to be resuscitated if his heart stopped or put on dialysis if his kidneys failed. And if the disease caused him to lash out, he wanted to be medicated to keep people safe.
"The nursing home employees got to see that video," Barbato says, "so it wasn't just a directive that somebody said this is what Butch wants. They could view that video and see that he was very serious about what he didn't want. Not just what he wanted, but what he didn't want."
The Noonan family knows Alzheimer's. They know what it steals and what it leaves behind, and how it often prompts family caregivers to isolate their loved ones, scared of how the person might behave in public, or what they might say. John Noonan says that sharing their story with other families, their approach to the disease and suggestions for how to handle it helps give the family some power over it.
"We're not just victims of this disease," John Noonan says. "We've been proactive. We've taken the steps to help others around us, to help family members and other strangers. To deal with this, get the resources they need, the steps we've taken, so then they know they're not alone."
Butch Noonan died on November 4 of last year, just shy of his 59th birthday.
In addition to his recorded interview detailing his final wishes, there's another video the family has. It's also of Butch, and it's a collection of pictures set to music from the last 10 days of his life. You never see Butch's face in the video or get a good look at how Alzheimer's ravaged his body. Instead, the photos are of people's hands -- his, his brother's and sister's, his wife and two children's -- their hands holding each other and trying to offer comfort.

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