Janice Goldberg still remembers the first moment she laid eyes on her partner Sue.

It was over 45 years ago in the small beach town of Ocean City, Maryland. Janice had gotten a job waiting tables at an upscale restaurant after spending the first part of her summer in Europe. She wasn’t quite sure what the future had in store for her – then “there she was.”

Sue, who lived in Florida at the time, had travelled up the coast to spend the summer in Ocean City with her then-boyfriend. The two decided one day to treat themselves to a meal at a fancier restaurant, and happened to walk into the one where Janice worked. “The rest is, as they say, history.”

Janice started as Sue’s waiter, but it wasn’t long before she became her lover. Today, she’s her caregiver.

Sue began showing signs of Alzheimer’s disease about ten years ago. Since then, Janice has had to balance her work as both a theater director and a tour guide with caring for the love of her life. She recently agreed to take part in the upcoming PBS documentary Mind Over Matter: My Alzheimer’s to shed a light on her experience – and hopefully help end the “stigma” surrounding it.

“I want people to recognize that it’s a journey. I want people to recognize the difficulty of it, and I want to take away some of the fear that’s involved,” Janice tells The Advocate. “I also think that it’s important for people to see how caregivers and their loved ones can deal with it and what they do to make things manageable for themselves.”

The documentary is the third in a series from award-winning co-directors Anna Moot-Levin and Laura Green that focuses on neurodegenerative diseases. The film follows Janice and Sue’s journey alongside two other pairs of parent and child as they all navigate life with the conditions.

One of the film’s central themes is “how people living with Alzheimer’s and dementia continue to lead meaningful lives where they’re connected to others and connected to activities and things that they enjoy and love,” Moot-Levin says. This doesn’t just mean patients, as “there’s an impact on the immediate family, there’s an impact on the person’s community, and there’s a real loss in the experience of the people who are surrounding the person with that illness.”

“Each of them have such a deeply loving relationship and they find a way to maintain that relationship even as one person changes with dementia,” Green adds. “I think that people are very dismissive of the sort of personhood of people with Alzheimer’s and dementia, and they don’t always see and interact with them. There’s a lot more recognizing the humanity of people living with Alzheimer’s that we need to do.”

Including Janice and Sue’s relationship also showcases “what an LGBTQrelationship is like in aging,” Green says, which there unfortunately aren’t many examples of in media. The filmmakers wanted to examine the “differences” that arise in later stages of life for queer people, to which Janice asserts, “We’re older. That’s the difference.”

The directors initially connected with Janice and Sue over two years ago through SAGE, an advocacy organization for LGBTQ+ elders that offers support groups for people with neurodegenerative diseases. While Janice greatly appreciates having a group of queer people she can relate to, she says that she never pictured herself ending up in such a group. 

“I thought I’d get through my whole life without ‘therapy,’” Janice says. “Turns out you don’t.”

While Janice notes that “the battle is the same for everybody, and it’s vastly different for everybody all at the same time,” all the caregivers she knows have experienced a similar feeling of loss. This isn’t just from the changes in their loved ones, but the changes in themselves that Moot-Levin has dubbed a “transformation of identity.”

“For this particular disease, it’s hard as hell on the caregiver because the person who has the disease oftentimes does not know they have the disease. They think they’re fine, so they can live a peaceful, happy life,” Janice says. “I don’t know any caregiver who lives a peaceful, happy life.”

While Janice knew that the film was an “important project,” she says she mainly wanted to participate because it seemed “fun” – and it was “something good to do with Sue since she needs some engagement.”

Sue was a gracious host even when she didn’t remember that a documentary team was in her home, as Green says that she would frequently offer the crew snacks and refreshments. “She would sometimes forget that we were there and then be surprised that we were there, but still be a consummate hostess with the revelation that there was a camera crew in her apartment,” Green recalls.

What was “remarkable” for Janice about the process was being able to watch the documentary once it was finished and see Sue’s progression. When filming began, Sue was still verbal. Now, Janice says “words are difficult for her,” and that she mostly speaks in “gibberish.”

“To have to watch that, I found very moving and sad, but I was grateful that I saw it so there’s a documentation of that,” Janice says. 

Through the film, Janice hopes to draw attention to what people caring for loved ones with neurodegenerative diseases go through. The process is “draining on families,” she says, especially if “you’re under a certain income” or if “ people have to quit jobs to care for people and then there’s no income.”

The filmmakers also hope to erase some of the stigma surrounding such conditions, as Moot-Levin emphasizes “we need to support people through that sense of loss.”

“People often want to hide themselves as they begin to get dementia. People feel shame and embarrassment,” Green says. “Being more accepting so that we can have a society that people are more fully integrated in and less lonely and less isolated really would be wonderful.”Matter of Mind: My Alzheimer’s will debut as part of the Independent Lens series on PBS May 5.