Portions of this interview originally appeared in the article Maria Shriver Takes On Alzheimer’s Advocacy which ran at The Women's Media Center.
Marianne Schnall: You have been a passionate advocate for Alzheimer’s disease for many years. Why is this cause so important to you?
Maria Shriver: Well, my Dad was diagnosed with Alzheimer’s in 2003 and back then I didn’t know really anything about the disease – I knew that President Reagan had been diagnosed, but that was really about all. I wasn’t educated about Alzheimer’s disease so I had no idea what to expect. And what I found was a very bleak and dark landscape out there – I didn’t find any information, people really didn’t talk about it. So the first thing I did was I wrote a children’s book. I had written two previous children’s books about issues that people found difficult to talk about. And it was a way, I think, for myself to really process the diagnosis of Alzheimer’s – it’s called "What’s Happening to Grandpa?" But even then very few people wanted to engage in the topic of conversation, and I was a working journalist at the time – or actually I had just taken a leave. I thought I was a working journalist but then Arnold ran so I was little sideswiped by both [laughs]. But I went to NBC and others to see if they wanted to do a program on Alzheimer’s and nobody did.
So it was pretty kind of dark and my brothers and I and my mother really had no idea about what would our father go through, what would that be like, should he drive, should he not, should we let him go to the office, should he stay at home, how would that progress, what kind of caretaker should we get, should it be a man, should it be a woman? So these were all conversations that we had amongst ourselves , and the disease unfolded in its own unique way with my Dad. And I ended up two years ago working on an HBO project called The Alzheimer’s Project. I had pitched HBO on my children’s book and they had turned me down. And then in 2007 they came back and said, you know that project – we’re ready.
And I think that was a big turning point for Alzheimer’s. It coincided with the increase in numbers, it brought an issue out of what I would call the “dark room” and into the living room. And it has been their most successful and biggest television event ever. And it’s had over 900 million media impressions. And there doesn’t go by a day, or a half a day, where somebody doesn’t come up to me today asking for advice about their grandparents, their parents – asking “what’s the difference between dementia, Alzheimer’s?” Do I know good homes? Do I know good caretakers? Do I know clinical trials? And I think this is one of those issues that everybody is talking about, is nervous about, scared about – and still really doesn’t know where to go with it.
Marianne Schnall: What do you think is the greatest misconception about people who have Alzheimer’s? What do people need to know?
Maria Shriver: Well, that’s a really good question. I think the biggest misconception is that there’s no hope – period. And there obviously are many, many trials going on in this country and around the world. When you talk to the scientists, as I did, many of them during The Alzheimer’s Project – they have a lot of hope. Yes, many trials have fallen by the wayside, that’s true, but they believe that they’re learning a lot every day. And I think depending on who the person is when they develop the disease, or when they’re diagnosed with the disease – I think one of the first things is to talk to that person about the disease. Usually by the time somebody is diagnosed they’ve had it for a while, but they can still understand a little bit what’s happening to them. And a couple of the people who’ve had it said to me – “You know, no one ever asked me what I want. People just sit down in the family and start talking, about what they want – but I understand certain things.” So I think it’s just an individual situation, what works in your family, is that person working or not, can they continue working, can you financially afford a caregiver, what is your financial situation, your geographical location? Many people move parents with Alzheimer’s into their home, and proceed down a really winding road.
The other thing that I’m really passionate about – I call this a “mind-blowing” disease, because people usually use that term for something incredibly great – I’m trying to use it to get people’s attention – one, to get their attention, two, because it’s true, and three, because it’s really the best way to describe what happens to everybody in the family. It really does “blow your mind” to see somebody there who might have been the smartest person you know, who might have been the best speaker you’d ever laid eyes on, who might have had an illustrious career, and they look like that person – they’re walking around as that person – but they’re not that person. So it really does blow your mind.
I’m also interested in this because I’ve been an advocate for women – and 70% of the people who get and develop Alzheimer’s are women, and the vast majority of the people caring for people with Alzheimer’s - and mind you, Parkinson’s, Huntington’s, stroke victims - are also women. So we have a perfect storm for women, who are the majority of primary breadwinners in our American family, who are holding down full-time jobs, who are raising children, and who are caring for elderly parents. And we also have simultaneously to that articles about why aren’t women happy? Or where are women’s sex lives? Why are women not better off than we thought they were with women’s lib? So that tells me that there’s a huge divide between the reality of women’s lives – the media, government, business - and so that’s what’s The Shriver Report is going to look at – this new installation of it, and it’s also what I hope the March on Alzheimer’s will shed a light on – is that this disease – although I am not trying to be competitive with other diseases – this disease needs more money, more conversation, more adjustments by all of these institutions, then perhaps any other in American life.
Marianne Schnall: I wrote an article about The Shriver Report and last year’s Women’s Conference. What can you tell us about the March on Alzheimer’s which is tied into this year’s conference?
Maria Shriver: Well, the March itself is going to kick off what is now a two and a half day women’s conference. The goal of The Women’s Conference, under my direction, has really been to empower women to be architects of change, in their own lives, in their own communities, their state, their nation – wherever they see that they want to make a difference. If you want to be an architect of change by raising great kids – God bless. If you want to do it by raising money for your kid’s school – great. If you want to build a garden – whatever it is. The Women’s Conference doesn’t tell you everyone has to go out and work in this one area – I try to honor women who are working in various areas with the Minerva Awards. I bring women - and men - to the conference to talk about where they are impacting the world, where they are living their lives, and how they’ve lived it. So the goal of that is really to say: look at all these people out there, they weren’t famous, they weren’t born with a lot of money, and look what they’re doing with their lives. You can do it too. And so I wanted to kick it off with a form of service, because I was raised by two incredible servants of the public good, and I’m passionate about women, and I’m passionate about families, I’m passionate about Alzheimer’s. And I thought it was time to stop walking [laughs] and start marching. And I wanted to put a name on it that would get people’s attention, and I wanted it to be the biggest march, walk of this kind in the world, or in the nation.
So that’s my goal for it – it’s to raise awareness, to raise funds, and to really shine a light on the truth – which is that this disease disproportionately affects women. Not just as the person living with the disease – but women are the primary caretakers of the elder generation. And we can’t be, and also be the ones being afflicted as caregivers and as patients – we need help! We need help from our businesses where we work, with flex hours, we need help from our government, which is the largest employer in the nation. And I know we are in the midst of a recession, I know these things cost money, so before anybody starts saying anything – I know. But I think we need to have a conversation and say where are our priorities? Who is supposed to be doing this? What role does this have for women? Over a million teenagers are caring for elderly parents in the home. I bet people don’t know that! People don’t know the length, the duration of this disease. They don’t know that it gets funded so little compared to other diseases.
And I’m also a huge believer that the brain, the mind, is the new moon. You know, if President Kennedy could launch a space program to explore space and land a man on the moon – I think we should be launching a program, to launch the clues, the answers, to the human brain. Because it is what I call the next frontier - how we think, how we remember, how we love, how we process information. All the answers to Alzheimer’s and so many other diseases, and so many ways we live our life, are inside the brain, and the mind. And so I am interested in all of those subjects and how they interconnect.
Marianne Schnall: Speaking of interconnection, I was thinking that maybe part of the reason that there is sometimes a stigma attached to Alzheimer’s is maybe that we don’t necessarily like to face our own mortality or talk about aging.
Maria Shriver: No, we don’t at all! Particularly in this society. What’s kind of interesting is that when we’re talking about this subject in the United States, we have to talk about it differently depending on the community. Because Asian communities, Latino communities, African American communities – they look at the process of this diagnosis differently than maybe a Caucasian community. There was a woman I met at the Alzheimer’s march in Washington – it was an Alzheimer’s candlelight vigil. She’s Asian, and she’s from California, and her mother was diagnosed with Alzheimer’s. And all seven kids quit their jobs – they were all over the country. They all quit their jobs, they all moved home - they wouldn’t hear of anything other than keeping their mom in the home. They all sat down to figure out how to process – some moved back into the house, but they all moved back into the community, and have just cared for their mother with kind of no questions asked. Now that’s very different than many other people’s kind of ethnic experience, family experience, expectation.
So I think it is a difficult subject, particularly in this city, where I live – people don’t go, “Wow – that’s great, you’re getting older – that’s exciting!” [laughs] But I think that’s changing. You know, seventy-seven million baby boomers are quote “becoming older” so that is older – people who are sixty-five can outrun somebody who’s forty. So age is relative to a degree. But I think we have never had a national conversation about aging – we don’t know, particularly women don’t know – what is the right way to age. We’re told what maybe we should wear in our fifties or our sixties or seventies – but how we should act, how our brains will work – this is all I think new because we are living longer, and now we have the biggest population becoming older. So it’s a good time, and I think just like women fought for different issues that pertain to women, I think women will fight for the issue of care giving because they’re care giving on both fronts – whether it’s in the home, or with their children, or with their parents. And they’re primary breadwinners. And I don’t think people understand the pulls of a woman’s life. And I think men want to be part of that equation, and yet, they’re also somewhat in the dark about all these competing pressures.
But I’m also a big believer – I have four brothers, and they have stepped up to take care of my Dad in an incredible way. And I think have so become different kinds of role models for their kids and for the American man.
Marianne Schnall: What words of advice would you have for caring for a family member who has Alzheimer’s? Because that can be a pretty scary and overwhelming position to be in.
Maria Shriver: Yes, that’s true, it is. Well, I think, as one doctor told me- he said, “Once you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s.” Some cases are very quick, some cases can go for many, many, many years. Some people become really difficult and angry and agitated and can’t speak at all. Others don’t. So I would say that really the best thing to do is to find out what care giving support groups are, and if you are going to become the primary care giver, to figure out you’re going to need help. And you’re going to need help from – if you have family, from family, friends – teenagers in the neighborhood. If you can afford it, you should look at good assisted living places and they’re popping up all the time, but they’re expensive. You’d have to look at your insurance, you’d have to look at what kind of day care centers are out there for older people. And your parents’ will change – they may be eligible for one program for a while, and then get kicked out – that happens. And the stress and the ailments that happen to a care giver are also profound. So I would say to, as best you can, open your eyes, and at the same time kind of steel yourself.
I was just at a meeting in California last week where I want to mention – many of caregivers talked like I’m just talking, but they were also really adamant also getting out the message that there was a lot of good that could come from that experience. That it was tender, it was emotional, it brought incredible closeness for many people. They feel it’s what they promised when they got married, they feel it’s the ultimate gift a child can give a parent. They feel really good about themselves doing so. And so it’s so individual, and no one feeling is right or wrong. But I think the more people are comfortable talking about it and sharing their experiences and being validated in their road the better.
Marianne Schnall: On the flip side, what would you say to somebody who has had Alzheimer’s in their family or is at greater risk in terms of how they can prevent the onset of the disease and prepare?
Maria Shriver: Well, I would say only what I do myself – which is exercise – because there are studies that show the association between your cardiovascular health - the blood that goes from your body to your brain, there is a connection. So exercise I think is something that everybody should be doing, not just to ward off Alzheimer’s but just to be healthier. Vitamin D shows great promise as do Omega-3s. If it runs in your family I’d pay really close attention to those things. I would try to eat properly, exercise, take Vitamin D. Look at whatever comes out about the disease and about what’s connected to the disease. But the truth, you know, is if you did 100 crossword puzzles, there is no research that says you’re not going to get Alzheimer’s. My dad was the smartest human being I’ve ever met and he got Alzheimer’s. But if you enjoy crosswords puzzles and want to keep your mind active, do it! I don’t think it could hurt. So I think that it shows that to keep your mind engaged is important, to keep your body healthy, blood flowing, to eat the right foods, the quote unquote “Mediterranean Diet” does show promise. So does drinking some moderate red wine. So I think that it’s individual and I think if you get caught up in this it can be scary and confusing because you’re popping vitamin D and fish oil and Omega- 3s and you’re doing crosswords puzzles all day long – and then your life went by. You know?
So am I nervous about it? You bet. I’m scared to death about it. But I try to engage myself in hopeful things. I try to engage myself in putting the spotlight and use that fear to propel me to try to make a difference. And this issue is kind of, once again, a perfect storm of my work, on behalf of women, on behalf of mothers, on behalf of daughters, on behalf of my work as a journalist, as someone who likes to shine a light on issues that nobody talks about. As someone who likes to provoke conversations across generations, which my children’s books have tried to do. I wrote a book about death that everybody told me wouldn’t sell more than like 5,000 copies, because no book does. And it’s probably sold well over several million. So I think at a certain point of life you just have to kind of do what you think is right and just keep marching until someone pays attention.
Marianne Schnall: And certainly a lot of the things you can do to prevent Alzheimer’s are good things to be doing generally.
Maria Shriver: Yes – that’s right - so whether it’s Parkinson’s that runs in your family, or Huntington’s disease or whether it’s stroke – I guess the best thing is not to put your head in the sand and think those are diseases that happen to other people. You know, as I say to my kids, nobody in life gets a free pass. Everybody has to struggle - they struggle with a whole host of different things. So you know, get in shape, get your mind in shape – some people talk all the time about getting their bodies in shape, but they don’t talk about their mind. So I think it’s great to go worry about how your body or your face looks, but you should also pay attention to how your mind looks. What’s filling your heart, and where is your soul’s work being done.
And I think at The Women’s Conference I have really tried to program it in a very holistic way, and really tried to get people to look at that women are creatures with a whole host of interests and passions and vocations. And you can’t do a woman’s conference by just focusing on what’s going on in other parts of the world, you can’t do a woman’s conference just on focusing – I don’t think – on finance, or just on focusing on service, or just on focusing on children. Women like myself – they’re complicated, and they’re interested in a lot of different areas and they have a lot of different qualities within them. And so they like to march and they like to sit and read. They are artistic and they’re non artistic. They’re business women, they’re stay-at-home moms, they’re daughters, they’re not married, they’re married, they’re divorced, they’re single, they’re widowed, they’re rich, they’re poor. I also hope we’re at a place where they come together, as opposed to be divided into “you’re a quote unquote ‘working woman’ go over here. You’re a quote unquote a ‘mom,’ go over there. You’re quote unquote “interested in math and science”, go over there.’ I try to program The Woman’s Conference and everything about it to come in here.
Our conversation then went in a number of directions, including my work running the 15-year-old women’s web site and non-profit organization Feminist.com and her deep commitment and observations about a variety of issues impacting women. Here are a few select excerpts from our conversation:
Maria Shriver: You know, when I took over the Women’s Conference, I said, I don’t want it to be just a day of like government people talking – I want people to feel like they should go out the door and change the world. And then people said to me, “Well, then you have to direct them to one thing.” And I said, well, no, because women are so diverse. And I want to direct them to themselves. And then when I think you feel empowered yourself, my belief is that you will go out and do whatever it is that you think is right – I don’t want to tell you what I think is right. And so what I try to do, as you said, bring people in who have had the courage to use their own voices, and how they got there, which is usually a very bumpy road. So imagine a young Eve Ensler and bringing her and telling her she has to go and work in this area [V-Day]. Well, her passion was in violence against women. And she went out and created an extraordinary organization based on that. Gloria Steinem had a completely different interest.
And so I think that women somehow have allowed themselves or they got portrayed as one type – you’re either a feminist or you’re not. You’re a working woman or you’re not. You’re in a stay-at-home mommy war or you’re not. And I’m trying to shift that, to say – you know, for me the beauty of the women’s conference is that Eve Ensler is sitting next to the Pilates teacher. And Gloria Steinem is sitting next to the woman from the domestic violence center. And we’re fine thank you. There’s no fight at the table. I’m raising two girls, and I say to them, “I need you to be strong and soft. You can be smart and beautiful. You can dress well and be a woman. You can be feminine! And you can be all of these things, even though you may think they sound contradictory, they’re not.” And I think that’s a really good thing we can teach young girls – that if you’re twenty pounds overweight, you’re not dumb, you’re not not beautiful. You’re not not strong. And the more we give each other examples of that, the more honest we are with each other, the little bit easier it is to use your voice and step out. Because Lord knows it’s scary to step out in this culture, isn’t it? It’s scary to take the road less travelled. It’s scary to upend your life, and flip up your life, or walk into a room and say, “I’d like to be the leader of this.” This is a scary, scary, thing...
Who you are, and how you think, and how you feel and how you remember and how you process does come from the brain. And women’s and men’s brains are different. And who you decide you are and want to be comes from your experiences and how you process them and how you believe your life should go and your gut. And so I think that’s all really important. And it’s really hard to go and lead if you don’t know who you are. And I am also a big believer to allow people to change too. Everybody seems to always be getting attacked for changing their positions which is something I never really understood – it’s like well, I hope to God you’re changing! Why is change a bad thing? Why is it that you don’t have a different opinion about this, then maybe you did ten years ago? Have you been stuck in the mud? And a lot of this is marketing too. It’s like remarketing the American woman.
For more information about The Women’s Conference, visit www.womensconference.org
For more information about the March on Alzheimers and to register online, click here.
Portions of this interview originally appeared in the article Maria Shriver Takes On Alzheimer’s Advocacy which ran at The Women's Media Center.
From Media Blitz to Women's Conference: Has Maria Shriver Discerned a Watershed Moment? by Marianne Schnall
About Maria Shriver:
Shriver is the author of six books and an Emmy and Peabody Award-winning broadcast journalist currently serving as California’s First Lady. Shriver was co-Executive Producer of last year’s Emmy Award-winning four-part HBO documentary series, “The Alzheimer’s Project.” It took an inside look at cutting-edge research in the country’s leading Alzheimer’s laboratories and examined the effects of this disease on patients and families. One of the Emmy Award-winning films in the series, “Grandpa, Do you Know Who I Am?” was based on Shriver’s best-selling children’s book dealing with Alzheimer’s. “The Alzheimer’s Project,” one of HBO’s most-watched events ever, can be seen at http://www.hbo.com/alzheimers/the-films.html. A mother of four, Shriver has expanded the California Women’s Conference into a star-studded multi-day event for 30,000 participants, featuring newsmakers, cultural leaders, and opinion makers, all with the goal of inspiring and empowering women to be Architects of Change in their own lives, their communities, and the world.
To learn more about Maria Shriver, visit www.FirstLady.ca.gov.
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Marianne Schnall is a widely published writer and interviewer. She is also the founder and Executive Director of Feminist.com and cofounder of EcoMall.com, a website promoting environmentally-friendly living. Marianne has worked for many media outlets and publications. Her interviews with well-known individuals appear at Feminist.com as well as in publications such as O, The Oprah Magazine, Glamour, In Style, The Huffington Post, the Women's Media Center, and many others.
Her new book based on her
interviews, Daring to Be Ourselves: Influential Women
Share Insights on Courage, Happiness and Finding Your Own Voice will be out in November 2010. Through her writings, interviews, and websites, Marianne strives to raise awareness and inspire activism around important issues and causes.