HLOL Podcast Transcripts

Health Literacy

Creating a Documentary Film about Caregiving and Mental Health (HLOL #241)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z. I also produce and host this podcast series, Health Literacy Out Loud.

Today, I’m talking with Richard Lui, who is an award-winning journalist with more than 30 years in media, technology and business. Richard has served as a television news anchor at MSNBC, NBC News and CNN Worldwide.

Among his many accomplishments, Richard spent 15 years in business, he serves on boards at nonprofit organizations and for-profit firms and he’s an ambassador for non-government organizations, or NGOs, that focus on issues of gender equality and human trafficking.

Much of Richard’s work is about the power of selflessness. He is author of the book Enough About Me, and director of two documentary films.

His first film, SkyBlossom, was inspired by his own long-distance caregiving for his father. The second film, Unconditional, deals with issues of mental health and family caregiving. These issues all resonate with health literacy.

Welcome, Richard.

Richard Lui: Helen, it’s great to be here and thanks for having me.

Helen Osborne: I am just honored to have this conversation. You bring such an interesting background as a journalist, an author, a movie producer and a family caregiver. Do tell us your side of the story. How did you get involved with all of this?

Richard Lui: It all started, I think, like for most: things you don’t plan on. My dad started forgetting things and we weren’t sure what to do. I was in New York. He’s in San Francisco.

My dad was never the sharpest guy and didn’t have the best ability to recollect things. My mom was that person. My dad was the nice guy. My mom was, too. I’m not saying my mom wasn’t.

That changed, and my aunt came over to me one day and said, “Your dad is forgetting things, like our names.” He has 12 siblings, and when you come from a large group, you tend to remember your siblings’ names only because if you’re also poor, you’re even closer.

That was the beginning of me learning about this thing called caregiving, which completely changed my trajectory of what I might spend almost all of my waking hours working on for personal reasons and working on for community. We all have that muscle in us that says, “We’ve got to do something for a better place.” That’s how it started.

Helen Osborne: Your dad did have something diagnosable with his memory.

Richard Lui: Yes, early on. They said, “It’s dementia, we think,” “We absolutely believe,” “It’s Alzheimer’s maybe,” and, “It’s Alzheimer’s, we definitely believe,” in that order.

Helen Osborne: I was just talking to somebody else about dementia. I just had a phone call right before I talked with you, and she’s talking about dementia or Alzheimer’s. I was saying my understanding is that dementia is the umbrella term, almost like saying cancer, and under that there are many types, of which Alzheimer’s is one of the more common ones.

Richard Lui: That’s right. There are so many different types that can be more aggressive and can affect and manifest in different ways. A big part of it was that we didn’t have a lot of distinction or education, and it was not for a lack of care. I think it was for a lack of solution.

You didn’t have any true therapeutic available up until this last year or so. In over 20 years, we hadn’t had anything that was new, and even the early ones just weren’t doing much.

Helen Osborne: I’m also thinking of your background, Richard. You bring a wealth of experience, but it’s in journalism and business. Now all of a sudden here you are helping to take care of your dad. Your background is not particularly a clinical background or public health at all.

What was it like for someone, essentially an outsider, smart, talented and capable, but someone that is now entering the world of healthcare?

Richard Lui: I don’t know about smart and capable.

Helen Osborne: Take the compliment.

Richard Lui: I should have you around more often. What I would tell the doctors, like my siblings would as well, is, “We only know one patient really well.” We knew nothing about medicine or neurology in comparison to those who were there to help us. That was an important way of describing our relationship with professionals.

Helen Osborne: Tell us a story. What was that like as you started having to interact with the professionals when this isn’t your world? Maybe at that point you didn’t know the difference between dementia and Alzheimer’s or what that meant, and you’re on the other side of the country. You’re often doing this from afar. What was that like?

Richard Lui: There’s a lot of dynamic to that question, Helen. I’ll drill down to what I was addressing earlier. We were a very active group of children trying to take care of my dad. That would mean a lot of questions, not only because I’m a journalist, but because in general that was the way our parents raised us, is to always ask questions. Not “Are we there yet?” although we did ask that, but things like, “Why?”

That can be a little daunting for any profession, when you have four people coming in on behalf of a loved one, asking all these questions.

We realized what was most efficacious in that back-and-forth was to clearly identify we’re asking questions not because we think we’re experts, because we knew we weren’t. We were just very curious, critical thinkers.

My dad would go into the hospital, which in the last three years of his life, he went a lot, so we asked a lot of questions. That relationship, that structure of working with healthcare professionals, is a very important way of setting out any relationship, because they’re there to help you.

The last thing we wanted to do was to try to say, “Oh, we know more than you, and we’re asking questions because we want to put you on your heels.” We don’t want to do that.

One of the best ways to qualify that, Helen, was simply to say, “We don’t know anything about healthcare and medicine relative to what you do. But we do know this patient super well.”

Helen Osborne: You talked about your father being from such a big family. You’ve got all these aunts and uncles and a number of siblings yourself. Did you figure out who was going to do what?

Were you the question-asker because you’re a journalist? Was somebody else the record-keeper? Was somebody else the hands-on? Did you have a plan from your family of how you were going to approach this?

You’re talking probably not to just one healthcare giver. You’re talking to a lot of people. There’s a whole team taking care of your dad. How did you apportion who does what?

Richard Lui: Very informal for the first two years or year and a half. Then we started to put together work schedules. We started to set up the protocol “if you’re on the ground, you know best” more often than not because we didn’t want tele-experts, if you will, in the family.

Of the four kids, we would always say, “What do you think on the ground? I’ll give you my opinion.”

What we would do is make sure there was always one of us there about 80% of the time when he was in the hospital or when he would go in for appointments. That was so important.

We did sort of develop this system. In terms of the roles, for me, very quickly, because I was used to mobilizing as a journalist to go anywhere for a story, I would just go. I was just there. I would get on a plane.

Helen Osborne: You’d hop a plane and you’d get there.

Richard Lui: Yes. I was there two to three times a month, and there was no question about it. Because of my profession, that was very natural for me to do. I’d get on the ground. I’d immediately start doing whatever I had to do and start working.

Often, I would arrive at 10:00 p.m. and then I’d do the overnight shift immediately. I was used to that based on what I do for work. That did, in a way, work out.

Helen Osborne: Richard, I saw you as the family caregiver in the second film, Unconditional. It was so moving. We’re going to have a link to it on your Health Literacy Out Loud podcast. It shows three families, yours included, dealing with both family caregiving and issues of mental health. It’s in several forms.

I can just picture you doing that. I see pictures of you touching your dad’s hand as he’s in the hospital bed. I encourage everyone to see how vividly you captured that.

But I want to transfer over. In addition to being a family caregiver, who did you decide to tell the story of this? Yes, you’re a journalist, but you’re a news journalist. How did you decide that film or books may be a way to help tell this story?

Richard Lui: The fact that we have maybe $600 to $700 billion a year of untapped family caregiving value out there, that we have 53 million-plus people doing this unpaid/untrained, was flabbergasting to me because nobody knew about us.

Helen Osborne: Us, meaning family caregivers?

Richard Lui: Yes. We didn’t even know about it ourselves. We thought we were the only ones in the room. It’s not only us as caregivers feeling that we’re the only ones in the room, but also society not realizing that we’re out there.

For me as a journalist, that was one of the major drivers of what gets me to put my feet on the ground every day when I get out of bed and stand up, put on my socks and go to work.

It’s that we have to address these gaps that are there in information and knowledge of what we are living through, and there are many. This was a gargantuan one.

In my space of storytelling, media and journalism, a documentary seemed to be the big gun, if you will. I could have done a story or two, which I did. But I knew if I really wanted to break out the big guns in our society, our western US society, film is a powerful platform and it’s a way to say, “It is a big deal.”

When we watch something in film, we tend to think that’s the big deal. This is what led to Unconditional, which is about family caregivers and mental health. We went to get it on the silver screen.

Helen Osborne: You also include your own story. I don’t know if it was ever tempting to tell other people’s stories a little more objectively, but you’re there. You’re there with your dad. You’re there with your mom. I really had a sense of who you were.

This film, too, if I can tell listeners before they watch this film how professionally it is done. It’s not like some people just holding up their camera, clicking here or there and getting a few videos together. It’s extremely professionally done.

I can’t remember seeing anything quite like that–a film about caregiving and mental health as professionally done as that one was. Was that a decision you made,? “If we’re going to do it, we’re going to do it top-notch?”

Richard Lui: Yes. At first, including me, which you addressed a couple times and I did not respond to yet, was not something I wanted to do. But because of the producing team that I was working with, and realizing how to make this the best film it could be to get people to potentially watch it and to get partners to partner with us, at the end of the day, I said, “Yes, we can include my family.”

In terms of the production value, it’s my second film and we edited this second film for two years.

Helen Osborne: That’s a long time for a film, isn’t it?

Richard Lui: Yes, ma’am. There are others that have got budgets with, I would say, two more zeros at the end. The budget for this film was about $1.5 million, and we had a lot of pro bono work in there, probably about half. Maybe $2 million total, but about $1.5 million to $2 million. That includes marketing budgets.

But we were focused on delivering a product that could really bring together a complex narrative of what family caregiving is, because it is complex. You know that. We all know that.

It is often a ho-hum topic. Caregiving? Ho-hum. We wanted to get the ho-hum into that because it is there. But we also wanted to get the haha. There are a lot of things in family caregiving where you’re laughing like you have never laughed before. That takes a lot of effort to find the moments that are so subtle, that are big.

What happens is in these families, the haha and the other stuff outside of the ho-hum is very subtle. How do you get that across in its impact?

What used to be a chuckle to you and me in an everyday context, in a caregiving context, that chuckle is a haha. It is a gut-wrenching laugh.

Every two weeks, we’d have a meeting with the editor, the producers and myself. It was like a therapy session for me. The editor would say, “Richard, I noticed this here. Why did you do that? Why did Amy do that? Why did Kate do that?” I would have to sit and think.

I would make decisions, but the editor would say, “Oh.” I had a great editor, Michelle Chang. Fantastic. She would ask those really tough questions, and I therefore was doing double duty. A little bit of therapy and a little bit of filmmaking.

Helen Osborne: I’m having this image, Richard, of someone who’s a patient, and when you’re a patient, you’re on the examining table, you’re wearing this skimpy little outfit, everyone else around you seem to be all-knowing and whatever. You might feel very vulnerable.

It sounds that in ways you were the one, as you now have to explain yourself to people whose expertise is a little bit different than yours.

Richard Lui: It is and it was, yes.

Helen Osborne: Thanks for sharing that. Are you glad you were in the film? I’m glad you were. But are you glad you were in the film?

Richard Lui: I think I’m okay with it, and I think the film is better because it’s there. Personally, I’m glad for a different reason. I’m glad because it made me talk about things on a very regular basis of what I was thinking and feeling. It became my every day.

What caregivers don’t do is what I was able to do. Caregivers do not have that every day, “Why were you thinking that? Why did you do that? Why were you emotional? Why weren’t you emotional? Why was that moment so special, and why wasn’t that one?”

When you’re doing that every day, as you know, that’s healthier for you in most cases. I am glad I was a part of it for that reason.

Helen Osborne: I am, too.

I want to go in two different directions. I want to hear about what’s happened to your film ever since, but I also want to hear for our listeners . . . I’m asking on behalf of them.

Our listeners are clinicians, public health folks, community agencies or caregivers themselves. We all care about communicating about health a little bit better today than we did yesterday. From your many perspectives, what do you want that audience to know?

Richard Lui: There is a big part of our culture that needs to be recognized, and that mental health is part of that conversation of that community. That can be both a difficulty, but it can also be a strength.

We talk about mental health in ways that are immediately negative. But mental health can be a muscle and it can be a strength. We need to think about it that way too.

I learned that from a 13-year-old during a group of seminars I was doing with the Yoga Alliance on mental health. At the end of the first session, she said, “Can I ask question?” We already finished, and I said, “Go ahead. Please.”

She was the youngest person there. We were in a yoga studio, which was already a very interesting venue, by the way. But then came this interesting question. “How come every time we have a mental health day at school it’s always about something bad? Why can’t mental health be about our strength, what we do well?”

Helen Osborne: Wow.

Richard Lui: I said, “Boom, you just dropped the mic.” I don’t remember her name now, but I’ve quoted her now or paraphrased what she said ever since.

This is what I hope folks see when they see Unconditional. Number one, there is a huge number of us going through this. You are not alone, and mental health can be a strength. It does not equal mental illness.

Once we can start to get into the nuances of caregiving and mental health, we will feel more seen and better off personally, person-to-person. That has been the response for Unconditional so far.

Helen, my mom, when I asked her, “How do you teach classes without feeling like you’re failing?” she’d say, “Richard, if I reach one, I did okay for the day.”

If the one, two or three people that responded after seeing Unconditional by sending me a message or posting something on our social platforms, it’s those folks, that handful that said, “Richard, I feel seen.”

Helen Osborne: Richard, I feel that I’m starting to hear you. You reached out to me, too, to be on this podcast.

Richard Lui: Yes, we did.

Helen Osborne: Which is probably not your usual audience. We have some overlap in professional associations. I was thrilled when you thought that this was a worthy topic to talk about with the people doing the everyday work.

We’re going to put a close on this conversation in just a moment, and with strong encouragement that people look up your work. What’s happened with your film now that it’s launched? Give us a teaser. Keep going. Tell us a little bit more.

Richard Lui: You got it. Helen, thank you for, if you will, picking up the phone when we called, because we do believe that this is the community that can talk about this. I know that talking with you and others in the community, you hear what we’re saying. You hear what we’re trying to say in the film.

You never know. I was worried. After working on it for seven years, it comes out. It came out in May, and I was worried, again, like I was saying, that what we thought was a really great idea is a really ugly kid.

We launched it in AMC Theatres. We had our world premiere at Universal Studios, and we went to the White House to screen at the White House.

Helen Osborne: You just said that in passing. “We had a screening at the White House.” Shout it.

Richard Lui: She invited us there.

Helen Osborne: Dr. Biden invited you there?

Richard Lui: Dr. Biden, yes. What we like to say is the most exclusive movie theater in the world because it has 42 seats, the White House family movie theater.

Then we played at the US Capitol for members of Congress.

Helen Osborne: Wow.

Richard Lui: It played on MSNBC. It got number one ratings. It’s on PBS. It’s one of the top two documentaries in terms of viewership for the year. Next is the UN.

Helen Osborne: Wow.

Richard Lui: In October is what we’re planning on now. Not confirmed, but we’re planning on that, and things look pretty good. Then finally, the European Parliament we’ll be showing in October and November as well.

Then we hope it’ll be on Peacock later on this year. It’s on Amazon Prime now, as well as on PBS Passport.

We’re glad. We were so worried that you go through all that effort, Helen, and then it’s a tree falling in a forest. I’m thankful for all of these groups that I just mentioned, all of these spaces and all the communities that said yes to it.

Helen Osborne: I am so grateful that you said yes to this podcast and that we’re doing this together. You sure brought out the haha and the power in that ho-hum.

Richard, thank you so much for sharing your story, which wasn’t always easy, telling the story and telling us the story about your story. Thank you for being a guest on Health Literacy Out Loud.

Richard Lui: Thank you, Helen, for what you do.

Helen Osborne: As we just heard from Richard Lui, it’s important to think about the many people involved with patient care. That isn’t just the patient, that isn’t just the family, but the family caregivers, the communities and the whole world of people who are involved in taking care of someone. But doing this is not always easy.

For help clearly, communicating your health message, take a look at my book, Health Literacy from A to Z. Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at helen@healthliteracy.com.

New Health Literacy Out Loud interviews come out the first of every month. Get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.

Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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