In front of a record-breaking crowd of 1,300 at the 2017 Alzheimer’s Association Advocacy Forum keynote session, MSNBC anchor and Association Celebrity Champion Richard Lui shared his personal experience as an Alzheimer’s caregiver and interviewed two advocates impacted by the disease.
Lui assists his 83-year-old mother in caring for his father, also 83, who is living with Alzheimer’s. After his father’s diagnosis, MSNBC agreed to let him alter his on-air schedule in order to travel from New York to San Francisco to help with caregiving duties during the week and return to his anchor job on weekends.
“Two years ago, I joined the ranks of the unpaid caregivers,” Lui said. “Reducing your time on TV is not a good thing if you want to be on TV, but that’s OK. Doing and earning less is actually doing more.”
Lui commended the caregivers in the audience, pointing out that caregiving is “a full-time job with 100 hours of overtime, zero fringe benefits and zero salary.” He said his family has “pulled out all the stops” in using technology to take care of his father, such as video chats, Google Docs to log experiences and coordinate tasks, and employing door sensors and locks in order to prevent his father from leaving the house unattended.
Evenings can be particularly challenging, he said. Lui’s father sleeps fitfully, getting up multiple times every night. While many people, with or without Alzheimer’s, might become agitated by repeatedly waking up, Lui’s father has the opposite reaction.
“He squeals with joy when I put him back to bed,” Lui said, “He remembers what it was like as a child to be tucked in at night. And if he can smile, I can’t help but smile every time, too.”
Lui said that his father’s Alzheimer’s has brought them closer in some ways; his father hugs him and tells Lui he loves him “every 30 minutes,” enjoys everything he cooks and laughs at all of his jokes. But being closer also includes “the tough stuff.”
“I’m watching my father slowly die in front of me,” he said. “At times, I’m overwhelmed with a deep, deep sadness — that feeling of moist, cold air that gets in your bones.”
To cope, Lui said he recalls experiences such as when he was 9 years old and was being bullied at school. His father said Lui had two choices: continue to be harassed or defend himself. Lui chose the latter, and his father sent him to learn martial arts. After five years of training, his father said he would teach him how to fight.
“As my father struggles, I’m still that 9-year-old kid,” Lui said. “I’m ready to fight, but now it’s for him.”
Lui then spoke to Brittney Williams, caregiver for her mother, who died from younger-onset Alzheimer’s in 2013, and Mike Belleville, a member of the Alzheimer’s Association National Early-Stage Advisory Group, who was diagnosed with younger-onset Alzheimer’s at age 52 the same year. (His diagnosis was changed to dementia with Lewy bodies in 2016.)
Acknowledging there can be a lighter side to the disease, Lui’s remarks featured humorous stories about his own Alzheimer’s experience, and he asked Williams if she had a favorite funny story to share.
“My mother was obsessed with the Beyoncé song ‘Love on Top,’” Williams said. “When she wanted to fight me or not take a shower, I would play the song and she would start dancing. One time we were at the grocery store and the song came on the PA and she did this whole choreographed routine … Laughter got us through, but I had to learn how to laugh and not be sad all the time.”
Belleville said he finds moment of levity in his situation, but it wasn’t always the case. Once an active member of his Bellingham, Massachusetts, community who dabbled in hobbies such as photography, he became depressed after learning he had dementia. He credits his wife of nearly 36 years, Cheryl, with changing his outlook.
“She said, ‘Enough is enough, we have to do something about this,’ and she called the Alzheimer’s Association,” he said. “They saved my life. They made me realize that I still have a voice and still have something to give. As long as I have my voice, I’m going to use it.”
Both Williams — a first-year master’s of social work student and geriatric scholar at the University of Michigan — and Belleville are committed to doing whatever they can to help put an end to Alzheimer’s. Williams hopes to conduct research on the effect the disease has on children and how it impacts their resilience.
“I was 20 when my mother was diagnosed,” Williams said. “My siblings were 17, 11, 10 and 9-year-old twins. You think about being that age. I was asking for allowance money; they had my mom’s treatment regimen down to a T. What they were doing was phenomenal to me.”
Belleville sees every interaction — even one as simple as someone asking, “How’re you doing?” — as an opportunity to educate people about dementia and help reduce stigma.
“People who have dementia, especially in early stages, can live a meaningful, purposeful, engaged life, and I’ve been given an opportunity to make a difference,” he said. “One of my favorite quotes is from the great Jackie Robinson: ‘A life is not important except in the impact it has on other lives.’ I try to follow that as much as I can.
“I love movies, and one of my favorites is ‘The Shawshank Redemption,’” he continued. “Morgan Freeman’s character says to Tim Robbins’ character, ‘Get busy living or get busy dying.’ I’ve chosen to get busy living.”
Political consultant Mike McCurry, former press secretary for the Clinton White House, spoke during Tuesday’s lunch session on how advocates can help the cause in any environment.
The political climate in Washington doesn’t inspire much confidence, McCurry said, due to the bipartisan divide and that public trust of government is at an all-time low. Since 1995, polls show that the majority of Americans believe the country is on the wrong track, regardless of the party in power. In addition, approval ratings of institutions like Congress, the military, public schools, etc., sit at less than 50 percent.
“Most Americans don’t trust the government to get things right most of the time,” McCurry said. “People lack the fundamental confidence that our government will address the needs of the American people.”
Discussing how advocates can approach their Capitol Hill visits with elected officials who he said may be feeling the strain of political negativity; McCurry stressed the importance of civil and respectful dialogue.
“We have to find ways to talk about our future and listen to each other rather than shout each other down,” he said. “Don’t underestimate the value of using your voice in a very clear and kind way.”
McCurry further prepared advocates for their visits with legislators on Hill Day by offering his “five Cs of effective communication and advocacy”: credibility, candor, clarity, compassion and commitment. While all are vital, McCurry said Alzheimer’s advocates already exemplify the latter.
“The record attendance at this Advocacy Forum shows your commitment to the cause,” he said. “You’re making a huge difference in the fight against this disease. You’re showing everyone in Washington that you’re serious about ending Alzheimer’s once and for all.”