Candy Crowley on Dementia

Recently retired after 27 years as a TV journalist, former CNN correspondent Candy Crowley talks about her family’s battle against Alzheimer’s and what should be done on the national stage to combat the disease. In honor of National Alzheimer’s Awareness Month, Northwest Prime Time brings you this article which first appeared in the September, 2015 issue of Preserving Your Memory magazine.

Candy Crowley at work behind the scenes, photo courtesy of CNN

As the former chief political correspondent at CNN for 27 years, and host of the network’s State of the Union, Candy Crowley has never been shy about talking politics with Hollywood stars, Congress members and presidents.

And she’s done a good job of it.

For her work, Candy has received numerous awards, including an Emmy, a Broadcasters’ Award from the Associated Press and many others. In addition, Candy was the moderator at the 2012 presidential debate, the first woman to do so in two decades.

Although many would describe her as outspoken, there’s one topic Candy has been quiet about: her 90-year-old mother’s battle with dementia.

Preserving Your Memory magazine spoke to Candy about her mother’s experience, the political side of dementia and ways people can help in the fight to end Alzheimer’s and dementia.

Crowley hosted the 2012 presidential debate, photo courtesy of CNN

“Great, is the short answer,” says Candy Crowley on being the first woman in 20 years to moderate the presidential debate. “But I must say I didn’t feel the first woman part of it; to me it was just the challenge of a journalist. Obviously, I was aware because that’s how people approached it, but I don’t know that I felt any different than a male journalist would feel—just excited by the challenge and honored by the selection. I will say that I then began to hear from young women who would say, ‘I’m so excited. It will be so cool to see a woman …’ and from older women, it would be a ‘You go, girl’ sort of thing. So I realized it did have resonance with females, but personally, that wasn’t how it struck me. It struck me more as journalist than male or female.”

On leaving CNN: “I’ve been there for 27 years, and I’ve been in the business for more than 30. Now I want to do something new. And so probably by this fall, I’ll have figured it out. I wanted to take about nine months off. I’ve been working since I was 16. It just seemed like a good time. And I knew if I got involved in the next election, I wouldn’t want to leave. So I had to leave this year or wait until after the 2016 election, and I didn’t want to do that.”

Preserving Your Memory: Many people think of Alzheimer’s as only a health issue, but it’s also a political one.

“Absolutely,” replies Candy. “This is a huge problem, and what it needs is a whole lot of researchers. It is political because the federal government funds so much of this research. Obviously, you have different organizations to help, but it needs federal funding. And that becomes very political because federal funding isn’t infinite. There are only so many federal dollars, and there are many people suffering from a lot of things, so it becomes political in the battle for money to fund research.”

What can people do to get this issue in front of their local and national government and potentially increase funding?

“It’s funny because when you’re consumed by it as an individual, the last thing on your mind is politics and funding. But I think, in the end, it is the personal stories of people that reach Congress. You’ve got to have a strong lobbying arm. Congress is nothing but a collection of people, many of whom probably know somebody with Alzheimer’s. So there’s the personal stories, and then there’s talking to and writing letters to your congressmen and senators. There are a lot of folks competing for those federal dollars and it takes squeaky wheels. Who’s up there hammering? Who’s saying, this is an important issue to me, a voter in your state or in your district? We need more money for this. Know your facts, know your figures. Write your letters. It matters. Congress responds to voters.”

Until recently, Candy Crowley has been very private about her own mother’s condition. “She was a really private person and I’m just trying to protect her dignity, I guess,” says Candy of her mother. “This is an undignified disease, as we all know, and while she’s still here and there are people who know her, I feel some obligation to protect her. [But] I’m also aware of what a vital issue this is to bring to the forefront and try to get research and money for research. We need a cure. We need some understanding of what brings this on. The first time I ever said something in public, I didn’t really intend at all to talk about my personal experience. And I think there’s a part of me that [feels that] my personal experience pales in comparison to what some other people are going through. So I’ve been reluctant to do it, both for mom and her privacy and because I’m aware that so many other people have much harder challenges. And I think everybody, to a certain extent, goes through that because you’re kind of the guardian of that person’s legacy… You want to be protective of that, but at the same time you want to bring it to the public’s attention because it needs attention. I’m always struggling with that balance.”

Was Candy at all surprised the first time the doctors informed her family of the dementia?

“No, because we knew it long before any doctor told us. You know what it’s like when you look back at something and you say ‘Ahh?’ Well, I recall, maybe 15-20 years ago, saying to my brothers, I think there’s something wrong with Mom’s hearing. She would repeat conversations and ask the same questions over and over.

But over the years, it became increasingly clear. It was a gradual thing, though, like we would be in the car and she would be looking at a map, but the map was upside down. Just things that, at first, your mind doesn’t want to go there. But then, over time, we got to the point where she had the brake and the accelerator mixed up. You realize she can’t make a cup of coffee. That she will continually put coffee in the filter as opposed to realizing it’s ready to go. So we would sort of find ways around it. We’d load the coffee machine the night before and say, “Mom, just press [the on button].” We hung notes in different places and tried to make it not hard for her because it’s so hard on them when they’re in that place where they know something’s wrong, where they know they’re not remembering. It’s terrifying and confusing. My mom would sometimes take her fist and kind of knock on the side of her head and say, ‘I’ve got to get my act together,’ like she could will herself to remember. And it was just excruciating watching her struggle with the fact that she wasn’t remembering things and that she was leaving us, in a way. In a very painful way.

“The biggest challenge, I think, is for caregivers, the people doing this day-in and day-out for a loved one. They are saints, and that’s the truth of it. This can be excruciating, often because it takes place over a fairly lengthy period of time. Monetarily, it’s always a challenge to make sure your loved one is cared for. I think it takes a toll on the family. I’ve been lucky that my brother and I have not had huge differences of opinions on what to do or say. It’s difficult to watch somebody go through this, but we try to remind ourselves that it’s a lot more difficult for them. It’s challenging because you look across the table at someone you know very well, and you miss them because it’s no longer the person you once knew.”

Preserving Your Memory asks Candy: Does your mom still remember family members?

“No, but if it’s a friendly voice and someone to talk to… like the grandchildren…if they call her ‘Gamma,’ that’s good enough for her. If you asked, ‘Who is this?’ she wouldn’t know, but they’re in her comfort zone. It’s the same with her daughter-in-law. If you said to Mom, ‘Do you know who this is?’ she’d say, ‘That’s my friend.’ They’re in her comfort zone even if she couldn’t tell you exactly who they were. There are days when the clouds clear, and she knows who’s there in front of her. She forgets it immediately, but while they’re there, she’ll know.”

Preserving Your Memory: Many people who have a parent that develops dementia worry about their own memory. Does this concern you?

“It scares the crap out of me. I write my children saying, ‘If this happens to me, here’s what I want.’ I’ve been really clear. At one point, my oldest son said, ‘Please stop sending me these notes.’ But of course you think about it and wonder, ‘Am I gonna be a lucky one here?’ And you hope so. It’s not something I’m planning on. It’s not like I sit around every day worrying about it. But [I’d] be crazy not to think about what would I do or what would I want, how do I want this to be handled.”

Presidential candidates Jeb Bush recently spoke out about his mother-in-law’s battle with Alzheimer’s, and Ben Carson has talked about his mom, who is in the final stages of the disease. Because of their personal dealings with Alzheimer’s, do you think it will get more attention in the upcoming election?

“Elections are not a very good time to resolve problems. They tend to be far more rhetorical than they are problem-solving. But you’re absolutely on to something. Politics are personal. People form their politics on the basis of their personal experiences and if one of them has a loved one with Alzheimer’s, that makes a difference. If you have a family member suffering from dementia or Alzheimer’s, there’s nothing you’d rather do than say, ‘here, take this or do this,’ and get that person back. Yes, it matters that elected officials have hands-on experience with any of these memory diseases. And if they don’t, then it’s important that someone say, ‘Well, I’ve had experience. Let me tell you about it…’ ”

On being more vocal about the issue herself, Candy says: “It just depends on a myriad of things. ‘Can I be helpful here? Is this something I feel qualified to say something about?’ I know I’m a journalist but in the end I have no more answers or advice than anybody else, so I always want to make sure I can be of some use. And again, striking a balance: ‘Is this something I can do, and feel comfortable about, knowing what my mother would want?’ So it’s a case-by-case thing.”

On the caregivers of the world, Candy says: “It is about having resources. And I don’t mean just money. I mean breaks, like the ability to get away, to have your own life and to not let it get absorbed. And some people don’t have that luxury. They don’t have that help; they don’t have other family members that can step in. And I think that’s very hard health-wise, physically and mentally. That’s another one of those issues that has to be addressed, letting people know here’s where you can reach out, there is a place. And it’s also about caregivers asking for help, which is difficult sometimes because they are the closest to the loved one or they don’t want to burden anyone else. And it takes a toll. It’s an under-discussed cost of Alzheimer’s that people need to pay attention to, because who’s caring for the caregivers?

“The best advice I’ve had in practical terms is: don’t argue. Early on, I know I did. You spend your time trying to force them to remember reality or remember something they don’t. ‘Oh, you can do this coffee pot’ or ‘you can do that.’ Don’t argue because it gets you nowhere.

“I think the thing that sustains me is remembering that this is 9000% harder on her than it is on us. This is not how she thought her life was going to be. But it is what it is, and you love people through every single part of their life. Also, look for the moment. Carpe diem should be the watchwords for anybody who has a loved one with dementia or Alzheimer’s. You need to seize that moment and savor it for exactly what it is at that time, because that is all you’ve got.

“Preserving Your Memory” magazine is a publication of the Fisher Center for Alzheimer’s Research Foundation. For more information about Fisher Center for Alzheimer’s Research Foundation or “Preserving Your Memory” magazine, visit www.alzinfo.org