Alzheimer's Now the Disease Affecting You, Me and Everyone We Know
By Tiffany Eckert
More than five million Americans have Alzheimer’s disease. Seventy-six thousand live in Oregon. The National Alzheimer’s Association reports it is now the 6th leading cause of death. A study published in the New York Times last week (4/4/13) found Alzheimer’s to be the costliest malady in the country—more expensive than heart disease or cancer.
In part two of our special series on Memory Loss, the story of 59-year old Chuck Jackson and his emotional journey with the disease.
“How are you doing today? I’m doing pretty good today. It was a little hard coming over here cuz the car has a lot of…uh, This is one of the things I have that is..I don’t like to do this but—I forget what I’m talking about or I can’t get it out of my mouth. That’s what I don’t like about it right now.”
“When you say it, what is it?”
Chuck Jackson was born in Balco Oklahoma. His mother lived through the Dust Bowl. Those were hard times, but the worst hard times were yet to come. His mother, like her father and older siblings, developed Alzheimer’s disease. Chuck started caring for his mom when he was just a boy.
Jackson: “It got so bad that she wanted to die. She told me that. This one particular day she’d taken all her clothes off and went down into a drainage (ditch). And I had to get her out of there and get her back inside and get her clothes back on her. And still she wanted to die. She hated this thing we have.”
When she was 50 years old, Chuck’s mother did die. He moved away, got married and had a child.
Chuck worked for a community services consortium in Corvallis.
“Helping people find jobs.”
Then, when he was about 50, things started going wrong. He was forgetting meetings and getting bad job evaluations.
Chuck: “They were getting ready to get rid of me. And I was going to the doctor that day and he looked at me and said ‘Well, we might as well know that it’s already started in you’ so he told me to go out and tell them and get out.”
Marianne Gardner married Chuck in 1977 then…
“We divorced probably about two years or so before his diagnosis. He didn’t want to live with me and he didn’t want to live at home. And, he was definitely going through something.”
While more than half of marriages end in divorce. This one didn’t really end. It just changed.
“We loved each other both of us loved each other. We had some problems. But, she got me back…to take care of me.”
Chuck moved back in with Marianne and she became his care partner.
Marianne knew chuck’s family history with Alzheimer’s. But she didn’t want him to find out if he had the genetic marker for the disease.
Marianne: “It was really, really hard. Day we found out I just couldn’t stop crying. It was just, and I had not really lived with anybody with Alzheimer’s, you know?”
Chuck: “I wanted to know. I didn’t want to wait. I’d seen my mother go through it so I wasn’t afraid-I knew what it was. I was hoping I wouldn’t get it but…I did.”
Chuck inherited the PSN2 genetic mutation for Alzheimer’s. Usually, people with this gene have a 50-50 chance of developing the disease. But in chuck’s case, 12 of 14 immediate family members with the mutation got Alzheimer’s. And many had early on-set. Very rare.
“And now it’s continuing of course in the next generation. Chuck has other cousins who have already died of early-on set Alzheimer’s. And since Chuck was one of the younger cousins, some of their children now have Alzheimer’s.”
When Chuck’s mother and grandfather and aunts suffered and died from this disease, they didn’t know it already had a name.
In 1907, the German physician Alois Alzheimer presented findings from an autopsy of the brain of a 56 year old woman named Auguste Deter (see photo). It was then Dr. Alzheimer first described the tell-tale plaques and neurofibrillary tangles (see photo) now considered the hallmarks for the disease that was soon named after him.
Frank Hales is a gerontologist in Eugene who’s been working with and learning about people with Alzheimer’s since the 1960’s.
“Because Auguste Deter has one of the known three family genes, similar to Chuck. She couldn’t have avoided the Alzheimer’s. From 1907 until really the early 50’s, you don’t hear much about Alzheimer’s. It kinda snuck up on us.”
And yet, Hales says, scientists believe it’s been afflicting human beings for millennia.
“Alzheimer’s certainly has existed, at least the disease that we know, for thousands of years. The poets speak of it, Shakespeare wrote it. It’s in Ecclesiastes.”
It’s biblical. In the last 40 years, hales says he’s seen extraordinary progress in services and support for persons with Alzheimers and the people who care for them. That’s crucial, says hales, because we are living longer as a society. Alzheimer’s has become the disease that impacts you, me and everyone we know.
Chuck Jackson has taken steps to overcome the stigma of having Alzheimer’s Disease—traveling to Washington D.C., Chuck testified as part of an advisory board. Oregon Senator Ron Wyden called chuck a “national treasure” for his advocacy. Here’s Marianne: “Once he found out he had Alzheimer’s, Chuck really accepted—he really came to this deep acceptance of having Alzheimer’s and wanting to be an advocate. And wanting me also to help him in that. It’s become a different journey.”
A journey that spans generations.
“Nobody was helping anybody at that time. I wanted to help people like my mother. I did it for my mother really.”
http://alz.org (Alzheimer's Association)
http://alzstore.org (Alzheimer's Foundation of America)
http://alzheimer'sweekly.org (for research and updates)
http://alzheimersreadingroom.com (Educate and Empower)
http://alzheimers.gov (For people helping people with Alzheimer's)
http://alzinfo.org (Fisher Center for Alzheimer's Research)