Richard Lui-1
Richard Lui is a journalist and news anchor for MSNBC and NBC News. He was formerly at CNN where he became the first Asian American male to anchor a daily, national cable news show. Lui is also a columnist, contributing to publications including USA Today, Politico, The Seattle Times, Detroit Free Press, and The San Francisco Chronicle.
Lui’s work and reporting on humanitarian issues spans 30 years and six continents. He has received civil rights awards from organizations including AAJA, WWAAC, and OCA. He is patent holder and co-founder of the first bank-centric payment system. Editor-in-Chief Gary Barg sat down to talk with Richard about his most important role as family caregiver to his father living with Alzheimer’s Disease.
Gary Barg: Your family is caring for your dad, Steven, who’s living with Alzheimer’s disease, I was wondering how you first saw his disease manifest itself?
Richard Lui: Every year, my father would always give the prayer before we would start our Christmas celebration. First, everybody had to hold hands. Then he gives a prayer, which was very structured. He’s an old school Pastor in that he prepared everything, very neatly written on a yellow lined piece of paper. After the prayer, we would have to ask, “would anybody like to say what they’re thankful for?” And two or three would proceed to say what they are thankful for. And so, what would normally be a 40 to 60 second prayer in some holiday celebrations in his case it became a 10 or 15 minute shebang.
One Christmas, five years ago he did his prayer, but it was shorter, with none of the other typical things he had done for some 20 years. And then my aunt came over, pulled me aside and said, “Richard, I think your father’s forgetting some of our names.”
Gary Barg: The stress of the holidays is often when family members first notice the changes. What was the first thing you did after that day?
Richard Lui-2
Richard Lui: We had a family discussion along the way. He then went in for further evaluation and it was determined he was in early signs of Alzheimer’s. We called several places in the Bay Area to get help. We started some early preparation. I personally started to think what would the ideal living situation be given that they’re in their 80’s. In the end, we realized that we would have to update the basement and turn it into an apartment for them. So, as he was going through that arc, he would feel comfortable with the neighborhood. He could still go out and buy his sandwiches and his donuts and his newspapers and cookies and chewing gum as he always had, as opposed moving to a different place where he could become more disoriented.
Gary Barg: I really liked the point you make about doing what you can to modify the home and keep him where he’s comfortable and that he’s known for 50 years.
Richard Lui: Yes, and that was a big one. You really had to think through it. For us as the newbies, we were just thinking that what was probably easiest for our parents was to move into a different single level condo or something like that, right? Then you add in Alzheimer’s and you realize you don’t want to shock the system, if you don’t have to. And that’s something that we learned by doing our research on the Alzheimer’s Association website, that it’s not a good idea if we don’t have to because sudden changes can sometimes result in sudden stages in the disease itself.
Gary Barg: Can you tell me about the work of the Alzheimer’s Association? What does a caregiver need to know?
Richard Lui: First off, that it is a one stop shop. When you look at the five million people across the country that are living with Alzheimer’s, then you realize it probably makes sense to prepare. In terms of services, for instance, the Alzheimer’s Association has care consultation, which can happen in-person or by phone. I’ve also participated in support groups. Obviously, the education has been very helpful for us. The website makes it very easy to find information, and to be honest, just being able to hear stories that say you’re not alone, and there’s so many other people going through this.
Gary Barg: And self-identification is the biggest challenge to supporting caregivers. It’s like taking on a new job role, and we need to give you education, training and ammunition.
Richard Lui: It’s so true. Some 15 million folks take on this job and its unpaid. And it generates, if it were to be paid, a tremendous amount of GDP. And folks, don’t realize that Alzheimer’s caregiving is a job. I spoke at a session on caregiving at a journalism conference and when you saw who was on the panel, it was me and two other millennial caregivers, we start to realize, especially with early onset Alzheimer’s, what it means in terms of self-identification. They did a fantastic job of showing how it affects everybody, journalists included, and some of the tough choices that result given the demands of our profession.
Gary Barg: You have four siblings. How did you create a family caregiving plan that works for all of you?
Richard Lui: As you know Gary, siblings don’t always get along but for the most part we do get along and I think it just all fell into place. We started a couple of Google docs, one for scheduling and one for what we were learning, so that we wouldn’t have to get on conference calls. We were getting on conference calls about once a month early on, and now it’s just second nature. But, I think that was key in that we were each volunteering what we could do. And that was the first thing. Each of us, on our first bunch of calls was describing what our limits are, what we could handle, some more, some less. And then we just divided it and tried to battle this.
Now it is still very straightforward. It’s I can be home this week, not next week. I pick those two to three weeks out of the month that I can be there, then my sister will select those two or three weeks that she can be there. My two brothers who live in the city, would then determine what days they could fit in. So now it’s kind of second nature, but earlier on it was very specific. What can you do, what can’t you do.
Gary Barg: Well, and by the time it becomes second nature, that’s when you really need the support. Anything that they can offer. We call it the Reverse Gift List. Any gift that you can give to caring is valuable. We just have to figure out what pieces we need.
Richard Lui: Right. The difficult part sometimes is saying, well, what you can just do or give, is that enough? I think your statement about everything counts, is the graceful way to look at it. It’s tough for every family, I think, when you’re going through that conversation. Like, when we went through that conversation, then my mother was saying, “Oh, everything’s fine.” She’s always been such a hard worker, always so selfless, that she didn’t want to be a burden on her children. And I was like, are you crazy? Of course, you’re not a burden and of course, we are going to do all we can.