January is Alzheimer’s month and the way we raise awareness of this disease during this month here on FERNTV is to bring coverage of the documentary film The Caregivers’ Club which will be airing January 14th at 9PM on CBC. Director Cynthia Banks brings this emotional but intriguing film about several families and their everyday journey of caring for their loves ones who are battling with this unpredictable disease. The Caregivers’ Club not only gives an up close and personal perspective of the victims of Alzheimers but as well as the acknowledgement of the continuing battle for the caregivers who are almost at an instant forgotten. Director Cynthia Banks brings The Caregivers’ Club in a time where many of us can relate and a lot of us have to prepare for. We spoke to Cynthia Banks to discuss the importance of The Caregivers’ Club…
FERNTV: How did you become involved in this production The Caregivers’ Club?
Cynthia: The idea for The Caregivers’ Club began because I was angry with the healthcare system and the lack of understanding and services for dementia patients. In March 2016 my father was dying from dementia. He was in the hospital and I walked into the room one day and he was strapped down on the bed and my mom was crying in the corner. A social worker was telling her that they were planning on sending him home. I said ‘No, he’s not. For 10 years everything has been about him and now it’s going to be about my mom, his caregiver.’ I thought it would be good to profile three formal caregivers, a PSW, a nurse and a Doctor but as it developed I found that the more emotional stories were of the family caregivers, the foundation of our healthcare system.
FERNTV: Where there many families that you had to pitch to in order to get display the difficulties of dementia and Alzheimer’s?
Cynthia: The most difficult part of this documentary was researching and getting caregivers to participate. Dementia within a family often comes with a stigma attached, as well caregivers don’t have the time to lend to filming a documentary over a year. Most institutions, hospitals, community supports and groups would not help us because they didn’t trust our ‘message’ or ‘language’ or they didn’t want to break confidentiality – all those things that make it difficult for a journalist/filmmaker to penetrate this fortress of a system. Finally, we landed at Baycrest Health Sciences and Jonathan MacIndoe, Senior Communications Officer and Nira Rittenberg, Occupational Therapist went above and beyond the call of duty to find us caregivers. After that it was a matter of explaining my vision and promising that I wouldn’t impact their duties and try and stay out of the way as much as possible. In the end, I became very close with all of the participants.
FERNTV: Why do you believe these families said yes for them to be filmed?
Cynthia: I think each of them had their own individual reason. Karen wanted to expose the deficiencies in the system and also share helpful caregiving tips and strategies, Dom was shy but wanted to show how challenging the journey could be and Barb wanted to express to give other caregivers hope “If I can do it, you can do it and if you can do it, I can do it” as she says in the film. In fact, they all wanted to share hope I think.
FERNTV: You have done many documentary films in the past but what is the first thing that comes to mind that stood to be different when you were filming The Caregivers’ Club?
Cynthia: I’ve never become so close to the participants in a documentary. I’ve never cried so much as I have in the last year. I cried in some of the pre-interviews, I cried in the car after leaving their homes, I’ve credit with them as we shot, as well as in the edit suite, coming to terms with the awful journey my mom and I had to take with my dad. And I’ve never experienced such a devastating tragedy in the middle of filming when tragedy strikes one of the families. I had to take some time off after that.
FERNTV: Where there many times that you had to put down the camera because the scenes were just too emotional?
Cynthia: No one ever told us to turn the camera off. There was always an understanding that if they wanted us to leave or shut off we would have but it never happened. I tend to hold my emotion in my gut and not breathe! So there was a lot of scenes when I would just hold my breath to get through.
FERNTV: Which family in The Caregivers’ Club did you relate to the most?
Cynthia: I could relate to each of them. I could see a lot of my mom in Karen because they both just try so hard to make everything right. I understood Dom and the exhaustion he was feeling with some of the behavioural challenges he was dealing with because we went through behaviours with my dad at the end and I could definitely empathize with Barb because she is an adult/child caregiver watching her mom become less and less independent and regress into childlike qualities and that’s really hard to do.
FERNTV: What did you learn most about Alzheimer’s the disease itself?
Cynthia: It is unpredictable and there is no ‘right’ answer. Every person and every stage is different and needs different strategies to cope with. I also learned that we need much more research and answers. They still don’t know what and if some of the medication works.
FERNTV: What is coming up for you next in terms of films?
Cynthia: My films are usually based around social issues/fears that have gotten under my skin. I’ve got a few ideas to pitch but right now I’m taking the feature length version of The Caregivers’ Club across the country and turning it into a fundraising initiative to provide grants for 6 – 8 extra hours of extra help a week to the most physically and financially needy Canadian caregivers so they can take care of themselves. Many caregivers are in crisis and we need to help them immediately. If you can help us please donate to: gofundme.com/thecaregiversclub