It was almost a decade ago that photographer Maggie Steber realized that her mother, Madje Steber, was not going to get better. Although her mother had always lived independently, her dementia had gotten to the point where that would no longer be possible.
“I started photographing my mother as soon as I realized I was going to have to move her out of her home in Austin,” says Steber. “She would never let me photograph her before. When her defenses were down—and I’m sure some people will say that’s not right—I started photographing her.”
The project was originally intended as purely personal, a way for Steber to cope during her mother’s illness and a way for her to remember her mother in later days. There was also video, filmed as Madje Steber’s condition deteriorated, which would allow the photographer to remember how her mother moved and sounded. But along the way, says Steber, she realized that the project could be more than something she would dust off and look at when she wanted to remember. After a shorter project created for AARP and then a period of time away from the work after her mother’s death in 2009, Maggie Steber (in collaboration with MediaStorm) made a film, Rite of Passage, which will premiere June 11 at Galapagos Art Space in Brooklyn, N.Y.
Steber’s film involves photos and video taken at difficult moments and at beautiful ones—moments when Steber says her mother came out of herself and lost her shyness. Her mother’s reluctance to be photographed was, she thinks, a result of her youth and beauty passing; “it was so lovely to have these pictures where she was happy and beautiful again,” she says. The photographer hopes that those transcendent moments will teach viewers that illness comes in waves, that stages will pass and—perhaps most of all—that if you are willing to be a “warrior” on behalf of your loved one, they can have a positive end-of-life experience. Nobody told her how to navigate doctors and medications, and part of her goal is to help others with the research that accompanies a loved one’s death. “If you can stick with it,” she says, “there’s this rather remarkable gift at the end.”
Part of that gift is knowing that you’ve done what you could. Steber says that she was aware from a young age that her mother, the single mother of a single child, would die one day and that she had a responsibility to be there for it. And she was: “I was able to hold my mother while she took her last breath,” she says.
The other part is meeting your parent all over again, with all the barriers down. Steber says that, as her mother lost touch with the past, they lost touch with the mother-daughter relationship. “They don’t recognize you anymore. They fall in love with somebody else. They think the caregiver is their daughter,” she explains. “That’s a little startling, it hurts a little bit, but I started to see her as Madje.” It’s difficult for children to see their parents as individuals separate from themselves, but Madje became a whole woman to Maggie, someone who told marvelous stories, someone who had been a scientist and would have wanted her last days to help ease medical confusion, someone who could have become a friend if they had started out as strangers. “I just fell in love with her,” says Steber. “I know I would have just really enjoyed knowing this woman.”
Steber’s photographs and videos were made in order to preserve just one woman’s memory of a mother, but she says she hopes that her decision to share will help other people decide to look for those gifts of memory. “It doesn’t come easily, but it’s worth it,” she says. “You have to live with that for the rest of your life and I just think if you can live with the happier memories, the discovery and seeing somebody blossom even as they’re disappearing right in front of you, you have that to hold onto. And maybe it is the best thing you’ll ever do.”
Maggie Steber’s Rite of Passage premieres June 11 at Galapagos Art Space, along with Phillip Toledano’s A Shadow Passes, another film from MediaStorm about the loss of a loved one. More information about the event is available here.
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Write to Lily Rothman at lily.rothman@time.com