Sargent Shriver, an advisor to two presidents and the first director of the Peace Corps, no longer remembers the name of his daughter: Maria, California’s first lady and former television reporter. He has Alzheimer’s disease.
That diagnosis six years ago led Maria Shriver, like millions of others, to try to come to grips with this disease-and to become an advocate for better treatments. Her latest effort is a four-part television series, The Alzheimer’s Project, which debuts May 10 on HBO.
Paul Costello, executive director of the Office of Communication & Public Affairs for the Stanford University School of Medicine, recently interviewed her as part of the “1:2:1” program. The following is adapted from their conversation.
1. 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.
2. You open one of the films by saying, “I’m Maria Shriver, and I’m a child of Alzheimer’s.” What are 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.
3. What scares you the most?
Shriver: Getting it. And who’s going to take care of me? I have a lot of friends who are single. There’s a lot of aging single women. They’re terrified. Who’s going to take care of them? There aren’t enough caregivers to go around.
4. What are you hoping for in these films?
Shriver: I hope that political leaders will see this the way President Kennedy saw in 1960 the chance to break through to a new frontier and put a man on the moon. I hope that our leaders will look at this and say, “The next frontier is the brain, and we need to figure out a cure for what ails the brain.” I hope baby boomers will look at this and say, “This is an epidemic that will ravage our generation unless we push to find a cure.” So, I’m hoping that people will watch this across generations and talk about it. I think this is television at its best. I understand that it’s not light and fun. It asks a lot of the viewer, and I hope at the end of it, people will be moved to act.
5. Has the Alzheimer’s Study Group, an advisory panel established by Congress, thought about the research funding needs and the fiscal repercussions of Alzheimer’s?
Shriver: They did. Newt Gingrich and Bob Kerry both testified that it’s fiscally responsible to spend money now to find a cure because it will save us so much money. It is the most expensive disease in existence, it lasts the longest, it takes down the entire family-not only the person who has the disease. I’m hoping that this president will watch the series with his children and his wife and his mother-in-law, and all those different generations will look at it and say, “We’ve got to do something.”
Source: Stanford School of Medicine, USA