A Child of Alzheimer's Speaks Out

When her father was diagnosed with Alzheimer’s six years ago, Maria Shriver had many questions. Since then she’s learned a lot about how the disease impacts both the patient and the family. Today, the man who was the founding director of the Peace Corps and the War on Poverty, Ambassador to France and a vice presidential candidate no longer recognizes his own daughter. The pain of that reality is tempered with the hope her children inspire. "I watch how they talk andlaugh with my father. They don’t get bogged down in the sadness. Mykids and my nieces and nephews all accept my Dad for who he is today —and that’s been a lesson for me.”

This winter, Maria testified before a Senate committee hearing about Alzheimer’s and served as executive producer to a 4-part HBO series called The Alzheimer’s Project. Recently the first-lady of California spoke with Paul Costello, executive director of the Office of Communication & Public Affairs for the Stanford University School of Medicine. Here is an excerpt of that interview.

How has your relationship with your father changed as you came to terms with his having Alzheimer's disease?

Shriver: I think that everybody who's dealt with someone who has Alzheimer's spends a lot of the time in the beginning of the disease correcting them, telling them no, that's not what they're seeing; no, that's not what they're hearing; no, that's not what they're talking about. I recount a story in The Alzheimer's Project in which my dad and I were sitting outside, and he heard water. I said, "No. You're listening to traffic." He said, "No. I hear water." I said, "No. You hear traffic." Then I decided, well, what if I just decided that he actually hears water and I went with that? It taught me to just go with whatever my dad was thinking. So, if he tells me he sees something, and it's not what it is, I don't challenge him. I just go, "Oh, that's incredible," "How was that?" or "What does it look like?" I take the cue from him, and it puts me more in the moment. It also stops me from trying to make my dad the man he was, as opposed to the man he is.

You introduce yourself by saying, "I'm Maria Shriver, and I'm a child of Alzheimer's." What are you trying to convey by using that language?

Shriver: You are, while your parents are alive, always a child, right? You're their child, and you're a child of Alzheimer's. I'm trying to say that's who I am, and not be embarrassed about it. I could introduce myself in about a hundred different ways that nobody would find any common ground with. This is one of the few ways I can introduce myself that will make people think, "That's me, too."

As more people stand up and say, "I'm a child of...," the shame slides away a little bit more. We're in a very different climate today than we were five years ago. I can tell that by the number of people that come up to me and the way they come up to me - they don't speak in hushed tones anymore. When I testified [before the Senate Committee on Aging on March 25], my office in Sacramento was inundated with letters regarding my testimony - far more than anything I had done since I was the first lady.