The Caregivers’ Club
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
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.
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?
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.”
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.
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.
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.