A few years after my beautiful mother Adele was diagnosed with early-onset Alzheimer's disease at age 55, I was in a dark hole of anger and bitterness. Back then I had a conversation with a dear friend, who insisted that although losing my mother piece by piece to a disease with no treatment or cure was cruel and awful, there had to be a way to find a positive. "There must be some way to let the light in!" she said, trying to pull me from the abyss. "Nope! It's all just the worst thing ever!" I grumbled back.
But I can tell you now, six or seven years later, that I was so, so wrong. There can be so much light in even the cruelest darkness, and some of the most beautiful lights are the connections I've made with the other people who are using their voices to change the course of this shitty disease. And one of the strongest, most special bonds I have made is with Maria Shriver.
She's worked as a journalist, an author, an activist, a producer, and the First Lady of California — all while raising four awesome children. Maria has been a tireless advocate for modern American women and their unique needs through her nonprofit, nonpartisan Shriver Report initiative. And she has taken her personal experience of losing her father, the late, great Sargent Shriver, to Alzheimer's disease and become one of the most powerful Alzheimer's advocates in the world. Her children's book What's Happening to Grandpa not only continues to help explain Alzheimer's to young people every day, but it also grew into her Emmy-winning HBO four-part documentary series The Alzheimer's Project. She dedicated the 2010 edition of "The Shriver Report" to taking on Alzheimer's and has focused her organization The Women's Alzheimer's Movement on how the disease disproportionately affects women.
But above all, she is one of the coolest, smartest, and kindest women around. On top of being truly hard-working and totally inspiring for her dedication to improving the lives of women (and all humans), she's a mom who fiercely loves her kids and throws Sunday dinners — complete with pigs in a blanket. Since I first met her five years ago, I've been so lucky to get to know Maria Shriver, and I often look to her for inspiration on how to be a woman who fights for what she believes in.
Maria has interviewed my husband and me a few times over the years about our Alzheimer's-awareness movement Hilarity for Charity, and rudely, I've never interviewed her! Fortunately, a few weeks ago, I got to turn the tables on her. We talked about how she and her family dealt with her father's illness, the future of Alzheimer's research, and what you can be doing to prevent the disease.
Lauren Miller Rogen: I'm curious about when you started noticing Alzheimer's symptoms in your dad, and how you and your family face the stigma that surrounds Alzheimer's?
Maria Shriver: I didn't worry too much about the stigma. I think my brothers, my mother, and I wanted my dad to be able to go out, to be treated with dignity. He wrote a letter explaining his diagnosis, and off he went. We thought that it was important that he write the letter because he was asked to give so many speeches all the time, and we didn't want him to be giving a speech and then lose his way, and people think, Well, what's up with that?
I think he was received in a very loving, gracious, and generous way. He continued to go to the office. We got a driver for him who doubled as a caretaker, but we disguised him for a while as a driver. It unfolded. Like anybody knows, it was different every month, every week, and every year.
LMR: Right. I know it's sort of a hard question to answer, but can you remember how you started noticing changes in your dad?
MS: It was just small little things, as it always seems to be. He lost his way in speeches, which he had never done before. People in meetings noticed that he kept repeating himself. He was working all the time, so it was more people at work who noticed he couldn't remember where he was going.
It was one of those things where everybody was talking about it. I can't tell you "This person said this first." We approached it very much like a family. We approached it, and it began our discussions that we did on a weekly basis, which is we came together to talk about my dad, what kind of care should he be getting, what kind of program should he be in, who was on deck.
It was something that benefited us really well because as my dad's health started to evolve and change, so did my mother's. We were in sync by having a weekly call. Just like you have a meeting about a project, we had a weekly call that we all put on our calendars, and we would say, "This is what's going on. This is the change in the medication. What do you know? What do you know? OK."
LMR: Was he ever resistant? My mom, for the first, gosh, two years, three years, she was aware of what was happening, and she was so embarrassed and ashamed. She didn't want people to know, even though they knew. Was there ever any of that from your dad?
MS: No. Not that he expressed to me. He wasn't a big complainer, though. You know what I mean? He grew up in a house where nobody was really allowed to complain. He would sometimes get frustrated as the disease unfolded, and he would get frustrated when he couldn't find the keys to the car. Then when we'd say, "Well, you can't drive the car. Here's Mohammed, and he's going to drive you," he'd get frustrated, but then he'd get in the car. He would sometimes sit in the car and not get out of the car. It was a day-to-day thing.
Also, in 2006, my mother started to get sick. She had a stroke. She broke her hip. We started bouncing back and forth between Alzheimer's and strokes and caregiving. The entire caregiving journey between the two and what kind of people could care for my father, who didn't know anything about Alzheimer's, and who would care for my mother. It was overwhelming.
LMR: At the time, you were also raising your children.
MS: I was raising my children. I was First Lady of California. It was a lot. The Women's Alzheimer's Movement is really trying to get women first and foremost to be aware that they're at risk. To know what they can do, starting today, for their own cognitive health, to make them aware so that if their parents, like your mom or my dad, start to exhibit signs or to wonder about their own cognitive health, that they're equipped with information. They're equipped with the knowledge about where to go to help them, and that they're equipped with the knowledge for themselves. Also, to support caregivers. I found myself in that situation, but I was financially stable to get help. Most people can't do that, as you know, all too well.
I think this whole issue, whether it's of Alzheimer's or caregiving, has a long way to go, I think, as a national conversation. What do caregivers need? What do they look like? What do we as a country need? Why are two-thirds of the Alzheimer's cases women? Et cetera.
I think that we need to begin to see the caregiving profession as a vital and serious profession.
LMR: I know your "Shriver Report" in 2014 was dedicated to women who are living life paycheck to paycheck and are in these situations. Are there any politicians or organizations that are at the forefront, that are helping women and families with caretaking who are less privileged than we are?
MS: I just testified in Congress about increased funding for NIH [National Institutes of Health], but also for the caregiving force, because so many people end up in hospice. We need to educate people who are going into the caregiving profession. It's a profession that needs a living wage. It's a profession that needs to be respected and honored by those who are hiring these people. I often have found myself in discussions with people who are well-to-do, and they'll say, "Oh my God, I have to get a caregiver for my parent, and they want like $15 an hour." I'm like, "Well, how much do you pay your trainer?" They're like, "Uh, $100." I'm like, "And you can't pay your caregiver?"
I think that we need to begin to see the caregiving profession as a vital and serious profession. We need more regulation about who's in it and what are their qualifications, because more and more people are going to need to hire people to help them with their parents. Right?
We need to look at our Medicaid/Medicare system. What kind of help can people get who are living paycheck to paycheck, who are in a job or two, who have kids and who need help, because you can't keep your job and care for your parent simultaneously.
LMR: Where do they go at this point?
MS: I think there's a huge modification of our health-care conversation, which we're obviously in the midst of. But I don't see enough of a discussion around the issue of caregiving.
LMR: What do you think we should do to change that conversation?
MS: Well, I think we just have to keep having it, number one. We need to have it in publications like Lenny. We need to reach young people. I think, last I checked, almost a million people under the age of eighteen are caring for grandparents in their home. There are so many young women I meet all the time in their twenties and thirties, moving back home to care for a parent, changing their jobs.
We need to kind of elevate those people. We need to, as I said, if you're able and you hire somebody in that profession, pay them a living wage so it's actually a business that people want to go into. Then, I think it's 30- and 40-year-olds who can help their parents with their cognitive health, so that if they may need care later, push that back as far as possible. I think to elect political leaders who are interested in NIH funding and the caregiving population as an issue.
LMR: What do you think Alzheimer's looks like in five years, or ten years, realistically?
MS: I think it's a lot more people, unfortunately. I think it's a lot more stressed-out caregivers.
LMR: People often ask me what they can do to fight Alzheimer's. One way is to be an advocate: tell your story, have the conversations, write to your politicians, et cetera. But people also ask me as a human being who is striving for health and longevity, "What do I do to fight Alzheimer's?"
MS: What do you do?
LMR: I recently started talking to Richard Isaacson in New York, who is an Alzheimer's-prevention doctor, and modifying my diet based on my own genes and what my own specific body seems to need and require for health. I've been modifying my exercise per that and my sleep per that. I'm sure you can concur with this: What we've heard is it's living a healthy lifestyle. What's good for your heart can be good for your brain. That's generally what I tell people. What about you? What do you say?
MS: That's what we stress at Move for Minds. That's the whole basis for its existence, is to get into the gym, find people where they are, and try to get them to connect the dots between their physical health and their mental health.
I talk about that I've incorporated meditation. I have changed my diet, but not as much as I probably should. I do sleep. I'm trying to focus on trying to reduce my stress. I've always exercised, but I try to do it differently. I try to cut down on toxic situations. I try to walk out in nature and shut off the technology. I have a spiritual life, which is a big part of my life. I try to stay socially engaged. I try to learn new things. I'm trying to learn poker.
I really look at this as a huge women's-empowerment issue. Women can change the trajectory of this disease. First, by recognizing that a woman in her 60s is twice as likely in her lifetime to get this as she is to get breast cancer. Not to take women away from marching for breast cancer, but women should lead the way on this because this comes to their doorstep in every way. It comes to them as caregivers. It comes to them in terms of their cognitive health. It comes to them in terms of providing.
Everything comes around to this, whether it's environment, whether it's working paycheck to paycheck. It brings all the work that I've done in women's empowerment and social justice and intellectual disabilities full circle, because there isn't any part of your life that this doesn't impact.
This interview has been condensed and edited.
Lauren Miller Rogen is a filmmaker and co-founder of Hilarity for Charity.