Living with FTD can be exhausting, challenging, and at times deeply upsetting for people with a diagnosis, care partners, and family members. Yet, despite the many obstacles created by FTD, there can still be instances of connection, joy, and laughter between people diagnosed and their loved ones.

“There are moments where I was at my breaking point, where I said, ‘You know what, I’m just going to be with my mom,’” said independent filmmaker and actor Diana Gonzalez-Morett, whose mother is living with an FTD diagnosis. “All of a sudden, the connection happens. She’s back to that mom role – holding my hand or wiping the tears from my eyes.”

Such moments inspired Gonzalez-Morett’s short film Pedacito de Carne. In it, she aims to share both the struggles and the tender moments along the FTD journey, as well as the fact that persons diagnosed and their care partners are complex, multifaceted individuals, and not defined solely by their relationship to FTD.

“In the film, we discover by the end that we’re much more than just care partners or care recipients — we are infinite,” Gonzalez-Morett said. “We are many things, multitudes of things beyond those two roles.”

“That’s the Power of Eternal Love”

Gonzalez-Morett’s FTD journey began in 2017. She had just gotten out of school and was launching her acting career, but began noticing that something seemed amiss with her mother.

“There were notes of ‘Mom’s a little different,’ or ‘Mom seems like she might be depressed,’” Gonzalez-Morett said. “I would notice big things changing when I came home to visit. It was really jarring to see her change during that time.”

The subsequent FTD diagnosis hit the family with a sudden tidal wave of emotions. “I found myself really crushed; I remember feeling like I didn’t even recognize myself in the mirror,” Gonzalez-Morett said. “I tried to pursue my career, but I wasn’t in a place mentally to be able to do that.”

As she worked to educate herself about FTD, Gonzalez-Morett says she became trapped in a feedback loop of anxiety. She experienced panic attacks during acting auditions, concerned that she may be developing FTD herself. Mentally unable to continue with her career, she became her mom’s full-time care partner, but she continued to struggle with grief and worry.

“I was in a dark space and felt like everything was going wrong in my life,” Gonzalez-Morett said. “My mom, my best friend, my rock, my everything, the person who always believed in me as an artist, wasn’t there in the same way – it was really hard to grapple with.”

Then, something miraculous happened.

“One night, I had this dream where my mom met me in the clouds; she looked fantastic, she was glowing!” Gonzalez-Morett said. “She gave me a big hug, and we had tea in the clouds. She said, ‘I love you a lot, and I’m going to be here with you no matter what. Pursue your dreams. I believe in you.’”

When Gonzalez-Morett phoned her mother the next day, she learned that her mother had dreamed the same exact dream. She described to her amazed daughter the hug, the tea, the clouds.

“That’s the power of eternal love,” Gonzalez-Morett said. “That connection brought that glimmer of hope.

“FTD is terrible, and it sucks; it affects not just the person diagnosed but everyone connected to them,” she continued. “But once you find that glimmer of hope and love showing this person is still there, you realize just how many possibilities are available on your journey.”

Bringing the FTD Journey to Film

Gonzalez-Morett and creative partner Akilah A. Walker soon got to work on Pedacito de Carne. (Walker directed the film from Gonzalez-Morett’s script.) The short film illustrates a day in the life of Sandra (played by Gonzalez-Morett), who, like her creator, is a millennial care partner for her mother, who has FTD.

Working on the film helped Gonzalez-Morett release some emotions and process her experiences. “I needed to get things out, or I was going to explode,” she said. (Her sister, Sandra Gonzalez-Morett, has found an outlet for these feelings by becoming an AFTD Ambassador, working to spread awareness of FTD in both English and Spanish in Northern New Jersey.)

“But I also wanted to highlight things that needed to change,” Gonzalez-Morett said. “For example, it felt like my mom wasn’t treated with decency at some doctor’s appointments. I also wanted to highlight how people don’t fit into easily categorized boxes. How does the system not see that we are human beings?”

Gonzalez-Morett said that trying to obtain adequate medical care and help from social services often felt dehumanizing, compounding the already immense difficulties of life with FTD. She recalled one social worker recommending that her father divorce her mother to qualify for extra benefits. “It was challenging for my dad to hear that because he obviously wanted to stay with my mom,” Gonzalez-Morett said.

In Pedacito de Carne, Sandra’s mother, Antonia, is shown spending time with friends and finding ways to show her daughter how much she loves her, despite her FTD symptoms. Gonzalez-Morett said wanted to challenge the stigma facing people with FTD by highlighting their humanity and capacity for love and connection.

“Seeing old friends of my mom say things like, ‘She doesn’t remember me, what’s the point of visiting,’ and speaking of her in the past tense hurt so bad,” Gonzalez-Morett said. “The changes are drastic and hard to accept, but I accept who my mom is at every step of the journey. It’s easier for people to ignore things and dehumanize others than accept that they can feel sad and still treat them like they used to.”

Gonzalez-Morett said she was inspired to share her story to educate others and raise awareness of FTD, but also to connect with others who share her experiences. Asked if she had any advice for others who want to share their FTD story, she said, “Know when you’re ready to share – have a deep connection with yourself and be sure you’re ready to speak your truth.”

Pedacito de Carne was selected to be one of several films produced through Latino Lens: Narrative Short Film Incubator for Women of Color, a program of the National Association of Latino Independent Producers, which is sponsored by Netflix. The film’s world premiere was at the Los Angeles Latino International Film Festival. Gonzalez-Morett also showed the film, of which AFTD is a Social Impact Partner, during “FTD in the Arts,” a special pre-conference session of the 2023 AFTD Education Conference in St. Louis.