‘MY MOM WAS MY EVERYTHING’
The tragedy of early onset dementia
The title Much Too Young is particularly apt. This heartwrenching yet insightful documentary not only focuses on those afflicted with early onset dementia, but also on their children who have been thrust into unanticipated roles as caregivers at much too young an age.
It’s no coincidence that Much Too Young makes its broadcast première Thursday — World Alzheimer’s Day — at 9 p.m. and midnight on TVO. The documentary will also be available across Canada, beginning Friday, on www.tvo.org and muchtooyoung. com.
There are nearly 600,000 Canadians living with dementia, of whom 16,000 are under the age of 65. Both those numbers are expected to rise significantly in the years to come. Local directors Christopher Wynn and Russell Gienapp found four families, one in Montreal and three around Toronto, in which a spouse in their 50s was diagnosed with dementia and kids as young as 10 were trying to deal with the fallout.
Kathryn Fudurich, a 27-yearold singer and filmmaker, puts it best: “My mom was my everything. And then suddenly I had to be hers.”
Kathryn was 21 when her 55-year-old mother Patricia was diagnosed with Alzheimer’s. Though she tries to be as upbeat as possible in dealing with her mother, formerly a teacher, and her volatile mood changes, Kathryn’s life is hellish at a time when she would normally be trying to make her mark in the world and enjoying life with her contemporaries.
In one of the doc’s most moving moments, Kathryn deftly performs a stirring composition she has written for her mother. Therapeutic for sure, but there’s no denying the pain expressed in her music.
“It’s so hard to process all this,” Kathryn confesses on camera. No doubt.
The situation is no different for Kathleen Fraschetti, who was 20 when mom Moira was diagnosed with Alzheimer’s at 51. Or for Chris Wekeles, who was 25 when his 57-year-old father Peter was told he had Alzheimer’s.
Needless to say, Chris, married and a grad student in Molecular Genetics at the University of Toronto, has had a heck of a time balancing school and family life: “Taking care of a parent and having aspirations — they both can’t happen.”
At least the twentysomethings Kathryn, Kathleen and Chris have the coping mechanisms and maturity to try to deal with the ever-changing conditions of their parents. But one has to really feel for Aurelie Bouliane.
Aurelie was all of 10 when her 51-year-old dad François was diagnosed with Frontal Temporal Dementia. A self-described daddy’s girl, Aurelie, now 13, finds it particularly tough not just trying to accept François’s condition but also trying to relate to her friends who are consumed with far different issues — like coming of age. Though reluctant to complain and content to spend time doing puzzles with her dad, Aurelie is, essentially, being deprived of much of her youth.
The doc’s co-director Wynn has no difficulty relating to the plight of the young caregivers. It was about 17 years ago when Wynn left a burgeoning career as a film-commercials editor in Toronto to return home to Montreal to be with his dad John, who had recently been diagnosed with early onset Alzheimer’s at the age of 57. Wynn, 28 at the time, not only decided to tend to his dad’s needs but also to film his final years. John had been a larger-than-life figure, full of enthusiasm and prepared to enter into blissful retirement with his wife. Chris was able to capture John’s sad decline over a seven-year period in both compelling and loving fashion, and the resulting documentary, Forgetful Not Forgotten, serves as a frightening eye-opener to the ravages of dementia. Following the documentary’s theatrical and TV release, Wynn was ready to move on to other projects, but ended up being a go-to person on the subject, speaking to groups around the continent.
And when presented with the possibility of doing a follow-up documentary on the dilemmas of others dealing with early onset dementia, he was unable to resist.
“We were lucky enough to find families who let us come right into their worlds,” says Wynn, 45, whose co-director Gienapp is also the doc’s cinematographer. “It took a little time, them getting used to us and trusting us.”
And there’s no holding back on the part of the young caregivers here. Wynn and Gienapp capture the grim reality and, too often, the futility in trying to help once-proud and strong parents. Their roles have been completely reversed, with kids acting like parents for parents now acting like kids.
In order to allow viewers to immerse themselves more into the lives of some of the subjects, Wynn and Gienapp, with the VR team at The Digital Generals, followed-up with the Fraschetti family to create four virtual reality short-film experiences — also available on Thursday.
They’ve also designed a dedicated mobile app that delves
deeper into the world of those dealing with Alzheimer’s on a daily basis.
What the documentary also underscores is the fact that most Canadian families in the same position as those depicted here can’t afford to place their parents in long-term private-care facilities. Nor are there enough spots available in public-care facilities to handle all those in need. Which explains why families must come together and partake in the process at home.
“It’s not just the financial aspects, either” Wynn says. “In the film, we see systems come into place where the kids rally with their parents trying to keep the (afflicted) parents at home as long as they can.
“What makes it more complex is that there are a lot of young families with a spouse who is still working. So the kids are really required to step in to help, even though they are going to school and trying to get on with their lives. It can be so disruptive.” To say the least.
Wynn has pledged that he won’t be doing another film on the same subject. “Unless it’s about me,” he half-heartedly jokes.
“Forgetful Not Forgotten took me eight years to make. Much Too Young has taken me four and a half years. And I was very lucky to have gotten them made at all. These were inspiring and uplifting projects, but I’m not running out to do another. I think I need to change gears a bit.”
So the kids are really required to step in to help, even though they are going to school and trying to get on with their lives. It can be so disruptive.