NPR 12-03:Living with Alzheimer's: 'I'm Still Me' 我脑海中的橡皮擦

Charles Jackson worries that his family will be saddened when Alzheimer's begins to take its toll 1 on him

This is Dave Isay, creator of StoryCorps, the project that records the stories of everyday Americans. StoryCorps airs each Friday on NPR's morning edition. Support for StoryCorps comes from AT&T, proudly bringing StoryCorps listeners America's past, present and future. The new AT&T, your world delivered.

Welcome to the StoryCorps podcast, I'm Katie Simon, filling in for Dave Isay this week. In this episode we hear from Charles Jackson, his mother side of the family has a genetic 3 predisposition that can cause early-onset Alzheimer's. Jackson’s mother began showing symptoms in her early 40s. And here Charles remembers the day he found out what was happening to her.

When Charles Jackson was 13, he learned that his mother's side of the family has a particular gene 2 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.So we went out and got in the old pickup 4 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 5 down the line.

It's the first day I heard the word Alzheimer's. When we got back to the farm, 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. I was the one became a care person for my mother at the time. I was 13.

I got to high school. I was in my senior year. And by this time mom was sitting in a 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 6 out of the house, she would leave and I'd have to go find her.

I was diagnosed in 2004 with Alzheimer's. I was 50. A friend of mine sent me an e-mail right after my diagnoses. She said this is terrible, this is unfair and it's a horrible thing. And I wrote back to her and I said, “Well, it’s not that bad, it’s not like you are in pain all the time. But it takes a toll on my family, because I know that when they see my failing, they get really sad and they don't like to see that. 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. 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 in Los Angeles. This interview was recorded as a part of the StoryCorps Memory Loss Initiative. Read more stories like this one in the first ever StoryCorps book, “Listening Is an Act of Love”, and catch Dave Isay on the Listening is an Act of Love book tour, he’ll be at Brooklyn BookSmith in Brooklyn, Massachusetts on Dec. 3rd and on Dec. 4th you can find him at the National Constitution Center in Philadelphia.

Major support for StoryCorps is provided by AT&T, and by the Corporation for Public Broadcasting. The StoryCorps Archive is housed at the American Folklife Center at the Library of Congress. Tune 7 into StoryCorps broadcasts Tuesdays on NPR's news and notes and Fridays on NPR's morning edition. I'm Katie Simon, thanks for listening.