Local caregiver shares her story in CBC doc
Although their story has been told, Karen Gillespie continues to share about her family’s journey with dementia in an effort to raise awareness about the illness and the services needed for it.
The Welland resident has spoken with Niagara’s daily papers in the past, but her newest effort in advocacy is participating in a CBC Docs POV episode called The Caregivers’ Club.
The full length documentary, by filmmaker Cynthia Banks, follows the stories of four caregivers, one of whom is Gillespie. Three of their stories, including Gillespie’s, is included in the 45- minute CBC episode.
Gillespie said the film crew came into her home for a firsthand look at how she cares for her husband Jack, who was officially diagnosed with early- onset Alzheimer’s in 2012. She has been his caregiver, however, for nine years. One of their daughters, Meghan, has moved back home to help with Jack’s caregiving as well.
Gillespie said it’s the first time their story has been told from this perspective and it’s something she’s eager to share.
“It’s not about me,” she said of being a part of the production. “It’s about being a caregiver and representing lots of caregivers that don’t have the opportunity to be involved.”
As for how Gillespie got involved, she said she and the other caregivers have used services at Baycrest, a health sciences centre in Toronto.
The filmmaker said she wanted to have a balance of stories for the documentary, which is how she chose the people she did. They are each at different stages in their caregiving roles and have different challenges they have faced or are facing.
To her, the production is what it is because of their raw and real stories.
“This is probably the most powerful documentary I’ve done in my entire life,” said Banks, noting her 25 years of experience in documentary filmmaking.
The reason she wanted to do the documentary at all was because of a personal connection to caregiving and dementia. Her father, who died last year, had dementia and was cared for by her and her mother.
She, like many other caregivers, was struggling to navigate the system.
“It started because I was angry at the health care system and I kind of wanted to expose the crises,” she explained.
Instead, the documentary became a way to “show the human faces of what happens to caregivers.”
Gillespie said most people have no idea what it really means to be a caregiver and how much of a toll that takes on someone’s life.
She said for her it’s very much about doing the best she can with the lack of services in the area. Because her husband, only in his 60s, has early- onset Alzheimer’s, many of the programs in Niagara available to other Alzheimer’s patients just aren’t available to him. It’s up to Gillespie to fill in those voids.
But she knows she’s not alone in this.
Her hope is that through watching the documentary other caregivers will realize they’re not alone in having to take on all of these unexpected and time- consuming roles either. She hopes they will realize they’re not alone with their frustrations and sorrows of learning to navigate becoming a caregiver and what impact that will have on their lives. She thinks caregivers may even pick up tips from what they see of her and the other participants’ stories.
Banks said she was particularly impressed with Gillespie, calling her the “ultimate caregiver” because of all her knowledge of the system and tricks for day- today life.
Overall, Gillespie feels the documentary has been a very positive experience.
It was more work than she had anticipated, but well worth it. She said she also felt respected by Banks and the film crew.
“I’m happy that Cynthia decided to spend this year of her life doing this and that we got to know an incredible and professional team of people that came here,” she said.
Being a part of the documentary has also brought her a sense of connectedness with the other participants and everyone else involved. She hopes the viewers will connect with their stories as well.
Banks said she wants to use the fulllength version of the documentary to get the conversation going about caregivers. She said much of the focus is often on what dementia is, but she said the caregivers are important and need to be heard, too.
Her goal is to take the full length film across the country and use it to raise money for a grant program for caregivers.
The 45- minute Docs POV version of The Caregivers’ Club will be available online at http:// cbc. ca/ CBCDocsPOV on Jan. 12 at 5 p. m. After that, it will air on television on Jan. 14 at 9 p. m. January is also Alzheimer’s Awareness Month.
Previews and more information about the episode is available at cbc.ca/cbcdocspov/episodes/thecaregiversclub.