Living with Alzheimer's: 'I'm Still Me'

Charles Jackson i i

Charles Jackson recorded his story in Los Angeles. StoryCorps hide caption

itoggle caption StoryCorps
Charles Jackson

Charles Jackson recorded his story in Los Angeles.

StoryCorps

When Charles Jackson was 13, he learned that his mother's side of the family has a particular gene that can cause early-onset Alzheimer's. His mother started showing symptoms of the disease in her early 40s. He remembers the day he found out what was going on.

"My brother Stanley and I came home from school and Mom told us that our aunt wanted to talk to us," Jackson says. "So we went out and got in the old pickup and drove over there. And my aunt started telling us that Mom had this disease that my Aunt Pearl had had and my Uncle Fred and so forth down the line.

"It's the first day I heard the word Alzheimer's. When we got back [home], it was dark and Mom and Dad were in a fight. Dad had gotten home from work and wanted to know where we were at and she had forgotten where we had gone. They were yelling and screaming at each other and it was a horrible night for all of us."

Barely a teenager, Jackson became his mother's caregiver. By the time he was a high school senior, he says, "Mom was sitting in the rocking chair with a blanket wrapped around her and all the blinds pulled down.

"That year she asked me if I could help her die and I told her I couldn't. And after that she started trying to run away. Any chance she thought she could sneak out of the house, she would leave and I'd have to go find her."

Jackson was diagnosed with Alzheimer's in 2004, at the age of 50.

A friend of his e-mailed him after his diagnosis.

"This is terrible and this isn't fair and it's a horrible thing," she wrote.

"Well, it's not that bad," Jackson replied. "It's not like you're in pain all the time."

But Jackson says it takes a toll on his family.

"I know that when they see my failing, they get really sad and they don't like to see that," he says. "I wish they would try to understand that I may be a little different. There's a time there where I will forget everybody's name, but inside I'm still here. I'm still me.

"And though my speech may be poor, inside I'm thinking how much fun I'm having with them. And I, as much as possible, would like to be treated as [I] had been treated before."

Charles Jackson's interview was recorded as a part of the StoryCorps Memory Loss Initiative. Produced for Morning Edition by Katie Simon. The senior producer for StoryCorps is Michael Garofalo.

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