When Connie Shulman first met Laury Sacks, she wasn't sure what to make of the encounter. "I knew there was something very odd going on," says Connie, an accomplished actress, well-known for her role as Yoga Jones on the Netflix series "Orange is the New Black."
"I just assumed she just wasn't interested in our friendship. She was pretty quiet, never instigated a conversation, never asked anything, never had an original idea. She's not really giving much to this friendship. That's what I thought, but she was always so happy to see me."
It wasn't until ten months later that Connie finally learned that the problem wasn't her; something had gone awry in her friend's brain, and that "something" was causing the normally gregarious Laury, a 46-year-old actress and writer, to lose her words and her confidence.
A series of neurological tests revealed that Laury had expressive aphasia—a condition that causes a person to have trouble putting their thoughts into words. Though no formal diagnosis had been made, whispers of possible early-onset dementia began making their way through her tight-knit group of friends and family.
Connie wanted to take action. She solicited the opinion of Laury's husband, Eric, who suggested that they try to keep Laury's mind active by giving her the opportunity to engage in her lifelong passion: acting. A plan was made to follow Laury around with a camera, documenting her day-to-day life experiences.
"She had this big personality," Connie explains. "She was a storyteller in her own right, and it seemed like the right venue for it."
Connie decided to ask Laury about the project over lunch. "Having lunch with Laury was like having lunch with a five-year-old," Connie says of her friend's inability to focus on their conversation. But Laury snapped to attention when Connie mentioned the film project. Laury immediately pulled out her phone and dialed Pam Hogan, an Emmy award-winning documentarian and longtime friend, who eagerly agreed to participate.
More than six years later, what began as a private project to keep Laury mentally engaged has transformed into an hour-long documentary entitled "Looks Like Laury, Sounds Like Laury." The film, co-produced by Connie and Pam, takes viewers on a journey into the lives of Laury and those who love her.
Documenting life with dementia
From the beginning, it's clear that this is not so much a film about dementia as it is about the enduring bond of friendship. "The truth is that Laury was really loved. She knew how to love people, and people loved her. She got a really raw deal and it stunk, but she had a lot of people who were going to try to keep her afloat for as long as they could," says Connie.
And try they did. A few months into filming, Laury was diagnosed with frontotemporal dementia, a progressive condition that causes the brain's frontal and temporal lobes (which are responsible for language, personality and behavior) to shrink. Viewers see how Laury's ability to communicate with people, look after her daughter, Talley, and care for her own needs begin to diminish at an alarmingly rapid rate. One scene shows Laury attempting to fix an after-school snack for Talley. The minutes tick by as an increasingly frustrated Laury tries to figure out how to operate a blender. In another segment, Laury sits on a rock in the park with her friend, Nicole Quinn, smoking a cigarette and venting her anger at the whole situation.
One of Connie's main roles was helping Eric persuade Laury to consider hiring a home health aide to help her out during the day. "Not a dud; some drag of a person. Somebody fun, like you!" Connie tells her friend in the film. "Who doesn't want to hang out with you? You're fun!"
Laury's group of devoted friends had initially tried to fill in the gaps, taking turns spending time with her while Eric was at work. But the emotional toll of the task was becoming too much for them. "By the end of the day, we would be sobbing," Connie admits. "There's a reason that people are trained to be caregivers." So she and Eric set out to find someone who would be able to be "like a girlfriend" for Laury. They ended up trying out three different caregivers; all of whom were competent, but none of whom were the right fit.
Eric was soon forced to make the painful decision to move his wife into an assisted living facility. The couple had two young children and Laury's decline was affecting them greatly. Indeed for Connie, the most difficult scene in the film is one where Talley is holding hands with her babysitter, walking down the street and chatting animatedly, while Laury walks several feet ahead, head down, seemingly lost in her own internal world. "To see that, it just kills me every time," admits Connie. "I was around her first and foremost as two moms—that's how I met her. As a mom myself, seeing another mother not being able to parent thet way she wanted too was heartbreaking."
Filming stopped after Laury moved, but her group of faithful companions continued to visit her in assisted living, despite the emotional turmoil they experienced seeing their forty-something friend living in a community of older adults. When she was just 52 years old, Laury's dementia claimed her life.
A different take on dementia
Unlike many other portrayals of dementia, there's a lightness infused into "Looks Like Laury" that intentionally mimics the spirit of the woman whose life is being chronicled. "We weren't doing a lot of crying, Connie says, "We were doing a lot of laughing."
Comical moments do crop up in the film. During one scene, Connie invites Laury over to her place to do some holiday baking. Laury perches on a stool in Connie's kitchen, holding a frosting-coated knife poised over a naked chocolate cake. As the two women chat about the genius of Betty Crocker, Laury suddenly licks the utensil clean, a satisfied look on her face. "Now, Laury, no one wants that after you've licked it," Connie says gently, handing her friend a clean knife. As soon as the second knife has frosting on it, Laury repeats the action with unabashed relish and both women dissolve into laughter.
"Laury wasn't crying," says Connie. "She was always smiling and laughing and walking really fast. She didn't have time to be crying. I hope that people get that from the film. What a vibrant person she was. This disease strips you of everything, but it doesn't take the core away. Even at her sickest, her essence was definitely there, and she was laughing, she was laughing at the end."
Media interest in Alzheimer's and other forms of dementia has never been greater. Actress Julianne Moore recently won an Oscar for her role as the Alzheimer's-stricken professor, Dr. Alice Howland, in the movie "Still Alice."
Dementia makes cameo appearances in many other popular films and television shows. Jimmy, one of the inmates in "Orange is the New Black," demonstrates the classic signs of cognitive impairment—saying inappropriate things, believing she is still in her 20s and having conversations with her deceased husband. When the wardens determine that her dementia is so advanced that they can no longer care for her, Jimmy is given "compassionate release" by being driven into town and dropped off on the street. It's an action that is disturbingly reprehensible, yet reflective of how people with dementia are sometimes treated by society.
"Has dementia gone mainstream in the media? Yes," Connie says. "That's scary that it's something we're all dealing with, but these stories are contagious and when people start talking, the dialogue really begins. Let's get this conversation going."
Connie saw firsthand how participating in the film project helped not only Laury to cope with her condition, but her friends and family as well. "Everybody was sort of dealing with it individually prior to shooting. Once we started shooting, everybody started coming out of the woodwork with the same confusion, frustration, sadness and loss," Connie remarks. "And once we started talking to each other, we felt so much better." She hopes that the film will help bring awareness and support to other families who are dealing with dementia.
"I wish that I had this film when I was going through my relationship with Laury. Because it's really lonely, it's really isolating. It's not only that way for the person who's ill, but those around them too. You don't know how much the person knows; how much the person feels. Because of that it's like walking on thin ice. This film is like someone holding your hand through that journey."
Laury's friends are convinced that that's the way she would've wanted the documentary to turn out. "I think she would be beaming," Connie says. "She would be so happy that her story was out there and that people were sort of looking to her as a friend, holding her hand as she leads them along. She was a pioneer woman."