“I didn’t think I’d be changing my mom’s diapers, brushing her teeth and helping her sponge bath in my 20s,” Kathryn Fudurich says. The 29-year-old is talking about her 63-year-old mother’s decline following a diagnosis of early-onset Alzheimer’s almost a decade ago. “My values and priorities were just immediately changed. I feel like I have all the wisdom that people get later in life.”
Fudurich is one of the young adults in the new documentary Much Too Young: The Untold Story of Young Caregivers & Alzheimer’s. Co-directed by Christopher Wynn and Russell Gienapp, Much Too Young shows the day-to-day heartaches and surprising joys of caring for a once-vibrant parent. There is also a Much Too Young virtual reality app that uses immersive storytelling to take viewers deeper into the hidden world of people with Alzheimer’s.
Wynn’s earlier film, Forgetful Not Forgotten, documented the last six years of his father’s life after his diagnosis at 57 when Wynn was in his late 20s. “I didn’t really focus on how it affected me as a younger caregiver,” says Wynn. But while promoting his film, he met several families affected by the early onset of the disease. “I thought, ‘Wow, I should really do a follow-up project,’” he says. “Even though it’s a small percentage, there’s still a lot of families dealing with this disease at a younger age.”
Much Too Young explores Alzheimer’s from a new angle. Wynn says Alzheimer’s is perceived as an old person’s disease, where the main caregiver is a spouse in their 70s or 80s with middle-aged children. With Much Too Young, he hopes to educate and engage a younger demographic, not typically interested in this topic: “If I don’t have the disease in my family and know there’s a film about other 20-year-olds, I’m more inclined to [be interested] just because they’re my age.” As he points out, the incidence of Alzheimer’s is rising dramatically, and these young adults could be future caregivers – or develop Alzheimer’s themselves.
Wynn credits co-director and cinematographer Gienapp for capturing the intimacy of family dynamics. None of the scenes are staged, and there were no re-takes. “He wanted to keep it organic,” Wynn says. Adding to the poignancy are reels of family movies juxtaposed with the harsher scenes of today. In one old clip, Moira Fraschetti, diagnosed at 50, is celebrating Christmas with her children. Her daughter, Kathleen Fraschetti, recalls that Christmas. Her creative engineer-turned-stay-at-home mom sewed matching fancy gowns for her and her siblings. “We had these ridiculous hats with little tassels on the ends,” she laughs. Now, Fraschetti guides her mother through the simplest of tasks, such as setting the dinner table and buttoning her blouse.
The unique challenges of young caregivers
Having a parent with early-onset Alzheimer’s poses unique challenges for the young caregivers in Much Too Young. There are time-consuming physical tasks that parents typically do for their infant children. As Fudurich patiently struggles to get her mother ready for bed, she tries to converse despite her mother’s gibbering: “Shut up, shut up. She doesn’t want her shucking jobs. She doesn’t want … johnny, johnny!”
As the young caregivers discover, their priorities change quickly. Chris Wekeles, a graduate student at the University of Toronto, explains: “Before all this happened … I had an idea of what I wanted to do. And where I wanted to go next.” But juggling his studies with caregiving is difficult. “I always feel like I’m not doing enough at the lab. And I always feel like I’m not doing enough at home,” he says. “That’s when it’s most stressful.”
Unlike cancer, which is more in the public eye, Wynn says there is far less acceptance of Alzheimer’s and far less support. This often leaves the caregiver feeling profoundly alone. “It’s hard for people to offer their hand or their ear for support when they have no idea what it’s actually like at home,” Fudurich says. “They think, ‘Oh, your mom is a bit confused’ when your whole life is crumbling and being rebuilt in a completely different way.” Ironically, the one person who could have understood her pain was her mom. She used to be the “constant go-to,” Fudurich says. “She was never the person who didn’t have the answer.”
Adding to the sense of isolation, Fudurich says, are the visuals typically seen on Alzheimer’s resources – “two smiling, white-haired people with sunshine in the background.” They remind these caregivers of their grandparents, not their parents. While there are support groups, it’s hard for younger caregivers to feel a sense of connection with other participants. Wekeles says, “I can’t relate to a caregiver who is probably my parents’ age. They know just as much about what it’s like to be a 26-year-old as I know what it’s like to be a 60-year-old.”
Several years ago, Fudurich took matters into her own hands. With a few other young caregivers, they created the Memory Ball. This annual Toronto gala raises awareness and funding for support programs. The gala has helped young caregivers find each other. Fudurich and Fraschetti are now friends. “It’s nice to know that there are other people who are in a similar situation,” Fraschetti says. “Because before meeting Kathryn, I hadn’t known anyone who had a parent with Alzheimer’s.”
Creating empathy and action for a growing problem
Much Too Young sheds light on a growing problem. “I just think it’s an eye-opener for a lot of people,” Wynn says. Fudurich participated in a screening at a conference for healthcare professionals and was surprised that even this group had little appreciation of the reality of her family’s situation. She thinks the film does a very good job of showing what have become, of necessity, daily routines. “I’m not a nurse,” she says, adding, “There’s not enough assistance out there to give one-on-one care to everyone.”
The documentary is currently available online through TVO and is coming to the Knowledge Network in British Columbia. More screenings are planned, many at chapters of the Alzheimer’s Society across the country. “We knew the Alzheimer’s community would be receptive,” Wynn says, “but we hope to grow bigger.” He and Gienapp want to take the film to public and nursing schools, international conferences and beyond. And they want to attract American and UK broadcasters, and stream through Netflix. “That’s our hope,” he says.
Much Too Young is not really a film about Alzheimer’s. “It’s a film about families; it’s a film about love and about caring,” Wynn says. There is scene after scene of young caregivers finding joy in the parent they have, rather than the parent they lost. Fudurich says that at the beginning of her mom’s disease, “I was so desperate for her to go back into mom mode.” And now? “Looking at each other and her smiling is what I want.”
Facts
- Alzheimer’s is the most common cause of dementia.
- More than half a million Canadians are living with dementia today; in the next 13 years that number is expected to double.
- 16,000 Canadians under the age of 65 are living with dementia.
- 8 million informal caregivers, including adult children, provide 75 percent of dementia care in Canada.
- The annual combined direct (medical) and indirect (lost earnings) cost of dementia in Canada is $10.4 billion.
- By 2031, that figure is estimated to rise to $16.6 billion per year.
(Source: Alzheimer Society of Canada)
Caregiver Resources
Alzheimer Society of Canada: Alzheimer Societies offer support, information and education in communities across Canada.
Memory Ball: Annual fundraising and awareness gala hosted by the Young Leaders Council of the Alzheimer Society of Toronto. Facebook and Instagram @MemoryBallTO
Baycrest: Online resources for people with dementia and caregivers, including coping strategies and support groups.
Dementia: A Caregiver’s Guide: A book to help caregivers support their loved one while making time for their own self-care. Order it via the Baycrest eStore.
The Change Foundation: Health policy think tank has information for young carers, including inventory of Ontario services and resources.
Young Carers Meetup: Alzheimer’s Society of Toronto program meets bi-monthly to provide emotional support and resources; option to join online or by phone.
The Memory Clinic: Stories of Hope and Healing for Alzheimer’s Patients and Their Families by Tiffany Chow, MD. Offers advice to caregivers on providing compassionate care. Available at bookstores.
All-Alzheimer’s: This new inspirational website targets Toronto caregivers and covers everything from what to do in an emergency to sourcing meal delivery services and tapping into dementia-friendly arts and entertainment. Founding partners Barbara Allan, Chloë Arnould and Liliane Vidicek all have cared for a loved one affected by Alzheimer’s or dementia. Their goal is to show caregivers that “Life can continue with joy!”
Originally published in Issue 01 of YouAreUNLTD Magazine.
