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Caregiving
By Stephanie Watson

Caregivers Share Stories in New Documentary

Film Stills from It's Not a Burden courtesy Greenie Films

Michelle Boyaner, a Los Angeles–based filmmaker, is on one of her many car trips with her 78-year-old mother, Elaine. There are always doctors' visits to keep and errands to run.

“I think I should leave Serenade Lane to you,” Elaine announces from the passenger seat.

“Do you remember what happened to Serenade Lane, Mom?” Boyaner replies, referring to her childhood home.

“I sold it,” says her mother, suddenly remembering.

On another car trip, Elaine wants to know, “Did we sell my house?”

“You sold your house in 1983,” Boyaner patiently responds.

On a different day, a different car ride, Elaine exclaims, “We have to sell it!” Boyaner sighs.

This conversation, repeating in almost Groundhog Day–like fashion, occurs throughout It's Not a Burden: The Humor and Heartache of Raising Elderly Parents, a documentary written and directed by Boyaner. Made before the pandemic, the film debuted on June 1 on iTunes, Apple TV, and other streaming services. Working with Barbara Green, her life partner and a cinematographer/editor, Boyaner spotlights a scenario familiar to anybody caring for a parent or friend with dementia—the daily effort to keep loved ones grounded in reality while their connections to the world gradually slip away.

The idea for the film came to Boyaner in 2015 as she compared notes with Maxine Lapiduss, a friend in Los Angeles who was caring for her own elderly mother. “Normally we would be talking about what was going on in the world,” she recalls. “Instead I was telling Maxine about a new medication that my mom had been prescribed. And she was like, ‘Oh, my mom was on that. It was terrible.'”

Boyaner thought that if she was having this kind of discussion with friends, other people must be too. That spring, she and Green began chronicling Boyaner's day-to-day caregiving missions—going to her mother's adult group home and taking her to the beauty salon, for lunches out, and on a seemingly endless series of errands. They also captured Boyaner's frequent visits to her then 77-year-old father, Morris, who lives in his home with one of his daughters, is a compulsive hoarder, and has type 2 diabetes, high blood pressure, and chronic obstructive pulmonary disease.

The film's subject is commonplace, as nearly 42 million Americans provide unpaid care to an older adult. “If we could create this collage of different experiences,” Boyaner says of her objective for the documentary, “wouldn't that be a beautiful gift to share with other people who are walking this same path?”

She and Green collected 18 stories and pieced them together to create a portrait of caregiving. Some people in the movie are sole caregivers; others share duties with in-home aides or nursing facilities. A few manage the responsibility from thousands of miles away. But all are committed to helping their loved ones live out their remaining years with grace and dignity.

One story follows Paula Michaels of Sherman Oaks, CA, who became the primary caregiver for her mother, Tricia, by virtue of geography: She lived closer than her two sisters and had been more involved in her mom's care since their father's death four years earlier.

As her mother's memory faltered and she needed round-the-clock care, Michaels hired part-time caregivers. But even when these aides were on duty, Michaels was too. “I was always on call,” she says. “More than once, a caregiver urgently called me and said, ‘Your mom locked me out of the house. I don't know what to do.'”

During one particularly difficult day shown in the movie, Tricia wanders through her home, opening and closing cabinets, turning a light switch off and on, and drifting in and out of a bedroom, constantly looking for something but never finding it, and becoming increasingly agitated as she struggles with her thoughts. Michaels trails close behind throughout and eventually puts a comforting arm around her mother and says, “We're having a tough day today.”

Instead of correcting her mother when she was confused, Michaels learned to meet her in her own reality, an approach Boyaner adopted with her own mother. “For a long time in the beginning, I was my mother's editor. I was circling things in red and correcting her,” she says. “Paula taught me to join my mother in her world.”

Juggling Act

In another part of the film, Michael Woolbright, a single father in Huntington Beach, CA, is seen caring for his aging mother while he raises two teenage children. He was one of the 11 million so-called “sandwich” caregivers—those tending to both their children and their parents—in the United States. As depicted in the film, he would wake up at 6:30, get breakfasts and lunches ready, check email, and drag his kids out of bed. He would drive them to school, take his mother to a doctor's appointment, and later drop the kids off at Scouts and theater rehearsals. Squeezing in work after they fell asleep, he kept going until his head hit the pillow or he fell asleep in his chair.

“I was just go, go, go,” Woolbright says. “If you have to get things done, you get them done.” But he realized he needed limits when he had two heart attacks. “It was my body's way of saying, ‘Stop it!’”

His experience was not unique: Almost 20 percent of caregivers say their responsibilities have affected their health, according to the AARP Public Policy Institute. Close to two-thirds consider their situation stressful, per a 2015 study by the AARP and the National Alliance for Caregiving. Boyaner says none of the caregivers featured in the film complained, but “everyone was exhausted.”

For Dawn Kirk-Alexander—who lives in North Hills, CA, where she balances her career as a documentary filmmaker with the day-to-day needs of her mother, Shirley Haymer, who has dementia—a support group has been a lifesaver. “I find myself welling up and crying. All the emotions I've felt but held in come to the surface,” she says. “I'm so glad I have the support group so I can let it out.”

Another person who appears in It's Not a Burden, Evette Ramirez of Provincetown, MA, had to care for a parent from a distance. At least two or three times a year for a decade, she would fly cross-country to see her father, Robert, in Phoenix.

As her father's Parkinson's disease worsened and he needed more help, Ramirez visited more often. Each time, she powered through as much as she could—paying bills, refilling prescriptions, driving her father to physical therapy, and handling anything else that needed to be done. Her visits were so regimented her father started calling her “drill sergeant.”

When she couldn't be there in person, Ramirez managed her dad's medical appointments and prescription refills through daily phone calls. “It was a challenge, especially because there were glitches,” she says. Occasionally problems arose when she wasn't there, like when one of Robert's medications caused him to hallucinate. Luckily, a neighbor was able to step in to help. Ramirez says it was a constant struggle when she was away, and she always felt guilty when she left.

Yet, as the documentary's subtitle suggests, caregiving isn't just stressful and sad. The filmmakers made a point to depict funny moments as well: For example, when Boyaner is about to leave her mother alone in the car for a few moments, she warns, “Don't talk to strangers.” “Unless they're tall, dark, and handsome,” Elaine quips.

Laughter was both a bond and a coping mechanism for Lapiduss and her mother, Esther, who was 96 when they were filmed. “My mother had always been hilarious and fun and upbeat,” Lapiduss says. But after she was diagnosed with dementia, Esther grew dark, angry, and withdrawn.

“My goal was to keep her as amused as possible,” Lapiduss says. She and Esther, who was once an entertainer, often sang silly songs together. “Even though she didn't know what day or year it was, she always knew the song.” Lapiduss did whatever she could to bring more light into Esther's life. “I could make a joke and hold her hand or sing a song,” she says.

A common thread runs through all the stories in the film. “It was this sense of responsibility, this sense of love,” Boyaner explains. “My parents did this for me; I want to do this for them.”

Ramirez says of caring for her dad: “It was just a given that I would do this for him.” To Michaels, caring for her mother was a privilege that taught her about giving, gratitude, patience, and love. “I always tried to see the beauty and joy in every moment with my mom, even though many of those moments were profoundly sad, emotional, and raw,” she says.

Through their respective journeys, the caregivers learned to forgive their parents for any past conflicts and to forgive themselves for any mistakes they made in taking care of their parents. “I don't think any of the caregivers thought they were slam-dunking it,” Boyaner says. “Everyone was doing the best they could.”