A coming film will document a family’s Alzheimer’s struggles

One day, Arlieta Hall’s father forgot that you don’t go to Best Buy to get chairs. On another day, he thought her brother was his younger self. That was when Arlieta realized that Alzheimer’s had hit the smartest man she knew.

When Milton Hall Sr. was diagnosed with Alzheimer’s disease and progressive dementia, he was 67. A curveball was thrown at the Hall family to see this proud South Side resident who was once a police officer, a public school principal, a gospel DJ, and a radio and TV host, tackled by this disease. To cope, Arlieta fell back on a newfound passion — improv.

“I think we were all just heartbroken because this was somebody who was the smartest man in the world to me. I just cried,” Arlieta said. “I didn’t know really what to do but I wanted to be a part of his life because I knew Alzheimer’s was going to make him eventually completely forget everything. I just wanted to be a part of it to make him laugh on his way out.”

Her love for improv comedy bloomed in December 2016 after she saw a show at The Second City and thought that she could do that. The next year she took improv classes in Evanston and met Tami Neumann, who created the Dementia RAW communication method in 2015.

Neumann, had been working for 20 years in the nursing homes and caregiving service until she found the value of improv by taking her son to comedy classes. She saw the “yes, and…” creative tool in improv as something caregivers and family members could use to get to know more about their loved ones instead of correcting them by taking them to the current reality they cannot mentally access.

“I was realizing … that with some of the basic rules of improv, it really simplified how we could really talk to caregivers, whether that’s a professional caregiver or a family care caregiver, on how to communicate with their loved one with dementia,” Neumann said. “ … It was really difficult for families to understand that it was not about lying to your (loved ones). Families came back with, ‘Well, I don’t want to lie to Mom, I don’t want to lie to Dad.’ And it just really was a difficult way to help them to see how to communicate.”

Arlieta went through Dementia RAW’s certification process in 2017 and began using it with her dad “to the point where he thought I was the one with Alzheimer’s or dementia,” she said.

“I think what (Arlieta) was doing and is doing is important work because sometimes when we can bring humor to something that’s so difficult, you can connect with other people by doing that,” Neumann said. “Her stand-up was it was funny and hilarious, but it was never in any way degrading to her father.”

Dementia RAW’s programs were discontinued during the pandemic, but Neumann hopes to bring them back with a blog or a podcast.

At the beginning of 2018 — against her family’s wishes (including her dad, who at that time was still lucid) — Arlieta had to quit her full-time job as a caseworker for the Illinois Department of Human Services, when balancing work while taking care of her dad became a burden.

After quitting her job, she reached the poverty level and was able to qualify for the same benefits she’d once helped people to get. She was able to become a home care aide through the Community Care Program, an initiative by the Illinois Department on Aging that allows a family member to get paid to help take care of an elderly family member that qualifies for this need.

Whenever Arlieta wasn’t taking care of her dad, she was doing side gigs that used all of her talents — she worked as an actor, a wedding singer, a painting teacher, a bartender, an improv teacher, … you name it, she did it. She even began teaching caregiving workshops at Scott Schools of Careers in 2019 about how to use improv when taking care of Alzheimer’s patients, and became a Second City fellow in 2020.

“(The students) absolutely love when (Arlieta) comes because she brings us the element of laughter, but applies it to do doing something that’s so real and so many people experience it and may not know how to channel their inner peace or patience. You have to have a lot of empathy to do what she did for her dad, and especially with these students that they work with multiple people at once. … I’m just grateful that I met her.”

While spending more time at her dad’s house, she began posting videos of their interactions on social media and people reacted, loving “how funny” she was and wanting to see more of it. That was what inspired Arlieta and her friend Brittany Alsot to begin shooting a documentary in 2018.

They first thought it was going to be a couple of videos of Arlieta’s strategy to take care of her dad through improvisation, but when Alsot went for the first time to Milton Hall Sr.’s home and saw them talking, she thought: “I could see you talking for hours.”

“Even though it was so hard for (Arlieta) to do this every day, the fact that she’s able to laugh about it and just do everything that she can to make it a positive experience, was inspiring,” said Alsot, the co-director and cinematographer of the “Finding Your Laughter” documentary, which chronicles the journey of Arlieta and Milton.

When the pair began to create the documentary, they realized there weren’t any stories on Alzheimer’s that were focused on Black families. This documentary would be the first nonfiction film focused on a Black family going through this disease.

“(Doing this documentary) was really important, especially when our leaders tell us that a lot of Black folks don’t want to talk about Alzheimer’s,” Alsot said. “It is like a ‘Keep that business to yourself’ matter. So, it was very clear that it’s very important that we tell this story, because if you don’t talk about an issue, then you can’t get help for it.”

Alsot also mentioned that she wants to also show the gender gap that exists when taking care of family members. “I have been watching how my grandparents are close to needing more care and watching, and usually it’s the women in the family who have to step up, even though it’s like an even gender split among the siblings,” she said.

They launched a crowdfunding campaign for the documentary in February, the same month that Milton Sr. went into hospice before he died on Feb. 17 at 73.

After finishing the production of the documentary with his death, they have four years of footage that are currently in postproduction to get the film released by fall. Another goal is to have the documentary broadcast on PBS, and to organize public screenings.

One day, in 2018, Milton Hall Sr. wandered out of the house and Arlieta got really scared.

When she found her dad, he was approaching random people, thinking they were his students or people he needed to escort home. Arlieta whispered to them to help her by “going with the flow” because her dad had Alzheimer’s.

She told the story to her stepmom, who thought it was hilarious.

“I was like, ‘That’s not fun,’” she said, remembering that stressful time. “And then I told my mom and cousin what happened and they started laughing and they were like, ‘But the way you say it’s so fun.’”

A couple of days after the incident with her father Arlieta went to an open mic hosted by a friend, whom she told about what had happened. The host immediately knew Arlieta had to tell that story onstage.

”So I went to another open mic and I didn’t know what I was gonna do,” she said.

She opened with: “Anybody here knows what is it to be a caregiver? Anybody here with someone with dementia or Alzheimer’s?” The answer was overwhelming. After the shows, people would go to her to share their stories with their loved ones who have had Alzheimer’s or dementia. The audience loved it.

“I just told the story about my dad and everybody was laughing,” she said.

“They would just tell me about their own stories and how my story resonated with them and it just became very therapeutic for me,” she said. “Putting all of this in the documentary — as what was the fun part of it, going along with also the hard part of caregiving — became a way of balancing the whole process for us.”

So that became a part of her process in working her stand-up comedy: Whatever extremely hard thing she went through with her dad went into her act.

However, not all of the Hall family understood Arlieta’s unconventional approach to comedy when treating her dad.

“My brother and I are complete opposites. He was in denial from the beginning (about using improvisation with my dad),” she said. “My dad and my brother saw each other every weekend of his life together. They share the same name. They look just alike. My dad would be looking at my brother thinking that is him and it was very funny, but my brother didn’t think so.”

For her birthday on Dec. 26, 2019, Arlieta asked her family to go see her in a stand-up show and she hadn’t told them what it was about. The shock of her show being all about how she takes care of her dad made them all understand why she was doing what she was doing.

“I am very glad I did it because that’s when we broke the silence on talking about my father,” she said.

The next time her family came over to Milton Hall Sr.’s house, they sat, agreed with him, and used the “yes, and…” method. “It was interesting to see them use (the improv) approach!” she said with a chuckle.

Arlieta said she didn’t even realize who her dad was before Alzheimer’s until he passed away on Feb. 17 and she “had to look at who he used to be” to organize his memorial and obituary. Milton Sr. became not only her dad, but also her best friend, her son, and even her supervisor sometimes. “We were able to get so close in such a tragedy,” Arlieta said.

After being in therapy for five years dealing with the mental weight of what it is to take care of her dad, Arlieta is now in family grief therapy since her dad died.

“I was so used to taking care of him, that I wake up and the first thing I do is to look for him,” she said. “It has helped me to be more transparent in the film about this being a real process. Alzheimer’s is a big thing because you are watching this person die the entire time. Now, when it happens, I actually miss the caregiving part.”

“The part that I was just saying was the hardest s—, I just miss this part.”

The crowdfunding page for the “Finding Your Laughter” documentary is still accepting donations at: wmm.com/sponsored-project/finding-your-laughter/.

If you or someone you know in Illinois needs help taking care of someone with Alzheimer’s or dementia, the Illinois Department on Aging suggests visiting the website illinois.gov/aging or calling the senior helpline, 1-800-252-8966.

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