Artist Chat with Arlieta Hall

What prompted you to turn this period of your life into a documentary?

I was already posting videos of myself taking care of my father online, like, I would post videos of us dancing, because he had Alzheimer’s disease. So he would think that I was just various people in his life, so I would just go along with everything that he was saying, and I would post it on social media, and people would be like, “We love to see this.” So I was like, hmm… we may have a film. So I reached out to one of my friends at the time, Brittany Alsot, who became my co-director and producer. She had a background in film, and my background was more in entertainment, and I was a caseworker, so I had never done any kind of film.

What was it like caregiving for your father during COVID?

Hard. Originally, I was going over there a few hours a day and staying as long as I was needed. But during COVID, I was scared to bring anything into the home. I actually had a nice loft, and I gave it up to live with my father. I gave up all of my freedom, basically.

That was a lot to sacrifice, and then I became a 24-7 caregiver. My father typically looked to me more than anybody else for help. It was a lot, seeing how he really was. Really seeing the confusion. People with Alzheimer’s and dementia are not able to keep up with what time it is. Their body and schedule are running on a completely different time than ours. Like, we’re looking at the clock as 9 to 5. They’re looking at it like, “I’m not sleepy right now therefore It must be 7am.”

It was a lot of adjusting, but it also, in the same breath, was a lot of acceptance for me to understand what he was really experiencing, because even though it’s hard on me, he’s the person with the “dis-ease,” and not “at ease.” It was a lot of just processing, like, wow, this person is really declining. I just wanted to kind of hold on to the good times, so I made him laugh, up until they wheeled him out.

It was a hell of an experience. I would say it was beautiful, because I get to share now how isolating and hard that was. Within the film, you get to see that we get to overcome, or not necessarily overcome. I feel that with grief, you’re never the same person after that, so you get to see the new people we become.

What was your highest high and your lowest low during this whole process?

I think my highest high, especially within the film or this process, is that my career has really grown since I started. I’m really proud of myself. I put in a lot of work, and my lowest low is that, my daddy’ll never see it.

What is your most prized moment that you captured with your father?

I did a music interview with him during Black History Month, and in my opinion, it’s one of the best scenes in the film. Where you get to see me just going along with him. He was wondering what I was doing over there, and I just told him I was there to interview him. So I’m like, “it’s Black History Month. How do you feel?” and he’s like “It’s been interesting.” That whole interview came out exactly as planned. Just going along with my daddy. He got to play his instrument, and you got to see him? You got to feel him, and it’s real. 

Then my other favorite scene is when I’m asking my daddy for forgiveness, and he’s like, “well, why didn’t you… I just can’t understand why you don’t have what you’re supposed to have together.” I love when he’s checking me, because that’s him. So, you get to really see him in those two scenes. I appreciate the viewer being able to see him being in control.

What advice would you give to caretakers whose parents have Alzheimer’s?

One, I would tell them to… forgive themselves. You don’t just wake up and become a caregiver. It’s just “boom” now it’s your job. So, forgive yourself for accepting a job that you didn’t apply for.

Two, give yourself permission to laugh to keep from crying. 

Three, remember, this person is at a “dis-ease” not “at ease.” So, don’t take it personally, with what they’re doing and how they’re acting. It’s the disease. It’s not them. Which is hard sometimes, because we’re like, “why are they talking to me like this? Why are they treating me like this?” You will waste your time, energy, and frustrate yourself trying to correct someone with dementia and Alzheimer’s. 

Four, do not talk about them in front of them. Please don’t do that. Just because they are confused doesn’t mean they don’t deserve respect, dignity, and that they can’t hear you. The more you talk about them, the more confused they get, when they’re already feeling insecure. 

Five, thank yourself for doing it, you’re a superhero. Also as you’re doing it, give yourself grace. Take breaks whenever possible. If people come over there for 30 minutes, walk away! If somebody calls them and talks to them for 15 minutes. Take a break. Somebody wants to be on the phone with them for 5 minutes, take a break to go breathe. If you don’t have a break, go in the bathroom or go outside and scream. I used to do it all the time. I still do it now, because I am a live-in caregiver for my mother, who is a retired psychologist with Alzheimer’s. We can’t fight it and acceptance will get you so much further. It’s okay to cry in the shower when nobody’s looking.

Six, agree with what they’re saying and try to make it your comedy show. They’re your scene partner, and it’s your responsibility to make your TV show you got going on with them look good. Don’t nobody wanna watch no boring TV show. You’re the director, you run it, so go along with your partner, because this is gonna be hard no matter what, and find your laptop.