• The Caregivers’ Club

    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.

    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. It is a compelling and cautionary tale; one that’s only just beginning for an entire generation.

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