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Launch of “Caring in Canada: Survey insights from caregivers and care providers across Canada,” May 2024

I was invited to be part of the launch for the Caring in Canada report on May 1, published by the Canadian Centre for Caregiving Excellence. The report provides survey insights from caregivers and care providers across Canada, and includes policy recommendations for improving the experiences and lives of caregivers. As part of a small panel, I was asked to give my thoughts in response to some prepared questions. My notes below!

     

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Can you share with us the impact your caregiving journey had on your life and your career?

I had a son named Owen, who had multiple severe disabilities all his life. He died at 12 about 14 years ago.  

The caregiving I provided was for a child. My child. It was exhausting, sometimes exhilarating, often strange and absurd. But I always knew my role was both important and necessary. I loved my son and I knew that the caregiving was an expression of that. I know for many people it’s a hard circumstance to imagine… but honestly, if you’ve ever loved somebody, you’ll have a sense of what that feeling might be, the honour it is to care for someone you love.

But something I didn’t have the time or wherewithal to reckon with, was loss. Not just loss of my hopes and dreams for the family I had envisioned, and also for my own life. My ambitions, my career plans, who I wanted to be in the world.  At some point I transitioned from parent – which I enjoyed –  to what another friend calls “medical mom” – which I struggled to embrace.  I lost my sense of self. And here I am, 14 years after my son’s death, contemplating the impact. 

To put in more concrete terms: I have a 12-year hole in my career and it wouldn’t take much math to get us to understand the financial impact that had. But it was also a 12 year hole in the development of my own goals, and in living a life that included experiences beyond my family obligations.  Between trying to  earning a living, sustain personal relationships, even just trying to eat and sleep…  it was like trying to do all that with one hand tied behind my back.

The original question was, what is the impact on my life and career? Well, personally, I think I’m now tougher than I would have been otherwise, more resilient. Not just because of the emotional and physical efforts required to care for Owen but because of the bureaucratic hurdles and the non-stop advocacy. It all thickens your skin. And the total impact on my career – hard to say. But I will say it’s been 14 years since Owen died and I’m only just now at the place I was hoping to be 25 years ago. And the window for my earning potential and opportunity to save for old age is much much shorter now. That resilience is coming in handy. 

What are your impressions of this new data?

I was very happy to not see the words “self-care”!!

It was interesting to see the diversity of caregivers represented. I think we make a lot of assumptions about who caregivers are, based on our own experiences – that’s what I did anyway – but it’s so important to see the actual reality of gender, language and age representation. It really hits home how pervasive and also invisible caregiving responsibilities are.

The noted increase in mental health related disabilities is really concerning. As challenging as things like physical care and disease management can be, a lot of us are kind of at sea when it comes to supporting people with mental health related disabilities.  My mom has Parkinson’s and lives in private retirement home so her care needs are met. But the Parkinson’s related dementia, depression, paranoia – I often feel overwhelmed and out of my depth. And I’m not sure her frontline support workers know how to manage it either.

What do want policy makers to know about care issues?

Care needs are constantly changing – stage of diagnosis, intensity of care and support that’s needed, and also the life stage of the caregiver – therefore supports need to be flexible, individualized, scalable.

Jennifer

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