Relatives of dementia victims call themselves members of ‘the club no one wants to join'. The Caregivers' Club follows three families — their heartbreak, humour and frustration. It’s a devastating but ultimately inspiring journey thousands of families will be forced to take as Canada ages.
They are called the forgotten ones because despite all the media coverage of dementia, those who actually care for loved ones at home, or accompany them through institutional life, are largely ignored or taken for granted. They are the unseen and unsung everyday heroes, who manage in surprising ways, to stay strong and carry on without appreciation from society — or even their own patients.
CAREGIVING IN CANADA
- There are currently 564,000 Canadians living with dementia. For each, there are one or more family members who provide care.
- In 2016, Canada spent $10.5 billion in out-of-pocket and health-care system costs on dementia.
- Costs for patients with dementia are estimated to be five and one-half times greater than for those who are dementia-free.
- The number if Canadians with dementia is expected to double by 2031.
Coping with dementia, including Alzheimer’s disease, is so much more difficult than dealing with a physical ailment, in large part because you never know what the loved one is thinking or going to do next. The great gift of human communication is extinguished. One caregiver calls it a ‘big gaping hole of unknown.’ People ask 'Does he recognize you?' Caregivers often have no idea. They must satisfy themselves with fond memories and yet sometimes a fragment of the original personality suddenly and briefly flares to life. Is that you? Do you know me? Can you see what is happening to you, to us?
Despite these hardships, caregivers learn to cope with compassion, perseverance and humour. One caregiver says, “I always knew I was in this for the long haul. I love my husband dearly. He’s still my soul mate.”
Another says, “Love doesn’t make it easier: it just keeps you there.” Another says, with a laugh, “What sustains me? Living in denial.” No wonder almost 80% of all caregivers suffer from depression and some even die before their patients.
In The Caregivers’ Club you’ll get to know three middle-aged caregivers – Domenic, Karen and Barbara – each taking care of a spouse or parent who can no longer take care of themselves. All three are connected to Baycrest Health Sciences in Toronto, where occupational therapist Nira Rittenberg provides advice, support, and consolation. All take you far beyond the practical problems of navigating a seemingly fickle healthcare system and into the psychological challenges of coping with the deterioration of their loved ones. Their stories unfold over a one year period as they navigate the erratic stages of this cruel and relentless disease.
The Caregivers’ Club is a candid, intimate portrait of their daily struggles with a disease that steals the personality — the very soul — of the ones they love. Domenic turns to yoga as therapy for the stress of caring for a wife with obsessive behaviour. Karen joyfully shaves, feeds and dresses a palliative husband who remains silent. Barbara juggles a career and three young children while pleading with support workers not to quit because of her mother’s anger towards them.
During the filming, one of our families suffers an almost unbearable tragedy, leaving them to mourn not just the mental loss of a parent but a sudden physical death. In an instant, what was one person’s burden must be borne by the children.
The Caregivers’ Club is a compelling and cautionary tale, one that’s only just beginning for an entire generation.
written & directed by
Deborah Palloway, CCE
director of photography
original music composed by
Michael Grippo, CSC
Deborah van Gelder
office production assistant
home video & photos provided by
CHATS Richmond Hill
Dr. Morris Freedman
Herb & Nancy Kumar
Reverend Vincenzo Rosato
The Rittenberg Family
Susan and Sheldon Abramovich
Aviva and Marcus Abramovich
Alzheimer Society of Canada
Baycrest Hospital & Health Sciences
for the CBC
general manager, programming
executive director, unscripted content
senior director, documentary
director of production
executive in charge of production
director of finance