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How 3 ‘Determined’ Green Bay women are giving a voice to anguish, resilience of Alzheimer’s families with film 10 years in making

Date
February 25, 2021

GREEN BAY – It started as a lunch meeting between two strangers 10 years ago at Not By Bread Alone, but for Therese Barry-Tanner, the inspiration for making a documentary about families affected by Alzheimer’s disease began long before then.

Her mother was diagnosed in 2001, shortly after her parents’ 50th wedding anniversary. She spent years helping her dad care for her, until he was no longer able to. On the day Barry-Tanner and her sister arrived to help move their mother to a nursing home, he told them he wouldn’t be going along.

“He couldn’t do it. He couldn’t take her there. My sister and I had to do it,” Barry-Tanner said. “Hardest day of my life.”

The emotional pain her dad suffered as a caregiver also took a physical toll. He had become so focused for so long on the care his wife needed he had neglected his own health. Less than a year after Barry-Tanner’s mother moved into a nursing home, her dad was diagnosed with terminal cancer. He died six months later.

Two years after that, in 2008, Barry-Tanner lost her mother.

The passage of time has done little to lessen the hurt that comes with sharing that story — one that’s not uncommon for Alzheimer’s families. It still brings her to tears.

“You can hear in the depth of this emotion that I felt very strongly that these kinds of stories, that what really happens in families, the way that it really is, not the way that they say it is, but the way that it really is had to be told,” she said.

That’s what brought her to lunch that day in 2011 with another Green Bay woman, independent producer Eileen Littig, and how “Determined” began a decade-long journey just now culminating in exposure on the film festival circuit, including virtual screenings with a ticket through April 4 at the Green Bay Film Festival.

“Determined” tells the story of three women participating in the Wisconsin Registry for Alzheimer’s Prevention, or WRAP, the world’s largest family history study of Alzheimer’s disease. The University of Wisconsin-Madison research group that began in 2001 is made up of primarily middle-aged adults with a deceased or living parent with Alzheimer’s, a factor that makes them 2½ times more likely to get the disease than those without a family history.

Through cognitive testing done every two years, laboratory tests, blood and spinal fluid samples and information on each person’s diets, sleep habits and physical activity, the aim is to track the characteristics and habits of people at high risk for the disease and observe them as they age. Why do some get Alzheimer’s and others do not? Is there anything that can slow the onset or progression of dementia?

Barry-Tanner has been one of the human research subjects of WRAP, which now numbers nearly 1,600 participants from 33 states, for more than 15 years.

She knew she wanted to make a film that melded the science of the study with the personal stories of the people in it, but there was just one problem: She’s a documentary aficionado but had never made one. So she took the advice of a friend and reached out to Littig, who has produced a long list of social justice programming for Wisconsin Public Television, including 25 years as producer of “Teen Connection.”

Not only was she interested, but she also happened to know a director who might be. She slid a piece of paper across the table to Barry-Tanner with a phone number on it.

“Call this woman,” she said. “By the way, she’s my daughter.”

Melissa Godoy is a Green Bay East High School graduate who lives in Cincinnati, where she has her own production company, Cinema Sol, and teaches documentary production and screenplay writing as an adjunct professor at the University of Cincinnati and Cincinnati State. With her mother, she co-produced “Do Not Go Gently,” the 2007 award-winning documentary on creative aging narrated by Walter Cronkite that aired for 12 years through American Public Television. She also worked as line producer for “American Factory,” the 2020 Oscar winner for Best Documentary Feature.

“I called (Melissa) on that Saturday and she said she was interested. I couldn’t believe it. I almost fell over,” Barry-Tanner said. “The first call I made to a director and I got a ‘yes.’”

“It was so intriguing to me,” said Godoy, who at the time was just finishing up several years of doing hands-on creative work in nursing homes with with Alzheimer’s. “I was just on board immediately. We had no funding. All it was was a concept, but I just thought it was marvelous concept.”

It was one call, one letter at time to get funding for the film

All three women were united in Barry-Tanner’s vision of a project that would help to elevate Alzheimer’s disease to the same heights as breast cancer, heart disease and AIDS, both in public awareness and research funding.

“The National Football League was giving a whole month to (breast cancer), and we just thought nobody wants to even bring up the word Alzheimer’s,” Barry-Tanner said. “We need to raise the bar.”

According to the World Health Organization, about 50 million people worldwide have dementia — a number expected to reach 82 million in 2030 and 152 million by 2050. But because it happens to primarily older populations, people often don’t want to talk about it. There’s also a misconception that normal aging leads to dementia, Godoy said. It sometimes gets written off as old age.

“A disease that really wreaks havoc with the mind is so much different than the other kinds of diseases that are out there, so I do think there is a stigma,” Barry-Tanner said. “A disease that robs you of your memory and your mental capability is something people just don’t want to even sometimes know about.”

The filmmakers spent a year raising the money needed to get the project off the ground. They cast a wide net. Barry-Tanner wrote countless letters to foundations around the state and went through donor lists one name at a time. She did cold calls and then followed up with letters. Littig tapped it into her funding connections from previous projects.

The Recall Foundation in Milwaukee provided the initial $50,000. Major funding from Bader Philanthropies in Milwaukee paved the way for other donations, many of which came from northeast Wisconsin, including the Greater Green Bay Community Foundation, Green Bay Packers Foundation, Forget Me Not Fund, Oneida Nation and Wochinske Family Foundation. Individuals and families also contributed in memory of a loved one.

“We would get from $25,000 to $25. We had many donors that were $25 or $100,” Littig said. “The people in northeastern Wisconsin, they couldn’t have been better in helping us. It was wonderful.”

Filming families over 5 years captured their love and loss

When it came time to cast the film, Barry-Tanner had received approval from WRAP to send a mailing to the 1,500 participants at the time explaining the project. Thirty-three expressed an interest in sharing their experiences for the cameras. They were whittled down to six through auditions. Barry-Tanner, Littig and Godoy and associate producer Jo Hillman traveled the state to interview each, ultimately choosing three.

The decision on who to feature didn’t come without some spirited back-and-forth among the filmmakers at a coffee shop in Oshkosh on the way back from the final visit. There was a compelling case to be made for each, but they knew they wanted the stories to be different but relatable and the people to represent diversity in race, age and geography.

“Determined” showcases the resilience and courage of Barb in Spooner, her father adamant he care for his wife in the late stages of the disease at home; Karen in Milwaukee, struggling to raise her young son after her mother’s death; and Sigrid in Madison, determined to adopt a lifestyle of physical fitness she hopes can stave off the disease that killed her mother.

All are in the study to help find a cure.

The eight-woman film crew would get to know them well during five years of shooting from 2013 to 2018. “Determined” is told with an observational filmmaking style that allows viewers to see the families as their lives are unfolding. Interview segments are sprinkled in.

“Ultimately, they had to really be willing to just let us in and be a fly on the wall for those verite scenes. They had to agree to ignore the camera and just be themselves and trust,” Godoy said. “… “The stories of the families, those are very deep and engaging. We had no idea how they would unfold, and they just did.”

There’s the joy of seeing a child graduate and the heartbreak of losing a spouse of 59 years. Visits to the gym and visits to the cemetery. Moments of tenderness and hope,  moments of frustration and fear.

“All these characters, the people in it that made them so wonderful is they were able to show their ugly sides. Every single story had some arguing or some bad things that wrong people could be judgmental about it. But they’ve shared those journeys and they went down to those depths and came back up in the end,” Godoy said.

Next up: An eye toward national, international distribution

Barry-Tanner remains in touch with all three of the women. She and the other filmmakers have joined them for podcasts to promote “Determined” at festivals. They’ll do a virtual talk-back session on March 13 as part of the Green Bay Film Festival (more info at gbfilmfestival.org).

COVID-19 has forced some of the festivals the film is set to screen at to be postponed, including DOCUTAH International Documentary Film Festival in St. George, Utah, and the Raw Science Film Festival in Los Angeles. The filmmakers also have submissions pending at other fests.

They plan do community screenings with organizations that have a connection to Alzheimer’s. They’ve just signed with a distributor trying to find them broadcast opportunities in the United States, Canada and Europe. The film’s fiscal sponsor, the Center for Independent Documentary in Boston, is also helping to get the word out.

From the start, WRAP co-founder Dr. Mark Sager encouraged Barry-Tanner, “a total rookie” filmmaker, to think beyond Wisconsin, with the project. There’s a need for it to be seen everywhere, he told her.

“From that day we have thought big,” Barry-Tanner said. “It’s a daunting task, and I’m glad I didn’t know how daunting it was.”

At the same time, she says there has never been anything in her life more affirming than the idea for the project. At its heart has always been the story of her parents that inspired it.

“This whole film would not be meaningful without Therese’s experience. It would be nothing,” Godoy said. “She drove this because of that emotion and her experience.”