Tuesday, 18 April 2017

The Unfairness of Caregiving

I've been trying to remember the first time I felt the outrage of injustice. I recall that in about grade four, I was playing outside my school when the bell rang to announce the end of recess. It was winter and the snow was piled up high beside the school. Unbeknownst to me, there were basement windows behind the snowbank and the day before when I'd been away sick, a note had gone home with all the students warning all students to keep away from the snowy barricades in case a shift in the weight of them smashed the hidden windows. Being unaware of the all-school directive, I decided that the snowbank was the perfect place to play 'King of the castle' and of course, I was the King.

The bell rang and along with a couple of my friends, I was called to the principal's office. I had no idea what I'd done wrong, but I knew I was in trouble. It was inconceivable to me that I should be treated like a common grade-school criminal. I was innocent! I decided to try distraction combined with a firm assumption of the moral high ground. I asked the principal if, by any chance, he knew the time. This was a mistake. Far from making him realize that he had the wrong girl, he got really angry and gave me a double detention. I was furious.

I've always been outraged by unfairness. I can't shrug it off. So I've been wondering about injustice in my own life experience. Most of the big injustices in our family haven't happened to me - they've happened to others who have developed care needs because of stroke (my Dad), disability (our son Nick) or age (my Mom). I've had to come to grips with the unfairness of illness and disability and sometimes it's been hard. But I realized that railing against the frightful injustice of what IS doesn't make anything better.

Have I experienced unfairness in caregiving? Of course. I think every caregiver does. And the biggest unfairness is the absence of personal choice when everything in our society tells us that we should have the right to choose how we spend our time and our money. We should be able to do what we want when we want, at least some of the time. But often in caregiving, we don't have that option and it feels very, very unfair.

I've worked hard at understanding my life in a way that makes me feel happy and fulfilled. But I don't underestimate the sense of unfairness that I've experienced and I know others experience it too. Caregiving is unfair because it's tied up with loss. But sometimes loss is just 'what is' no matter how painful and we have to accept it in order to understand that our family life and our role in it both have great value.

I think outrage is the appropriate response to injustice and unfairness. Where would we be without activists or advocates to make the world a better, kinder place? But caregivers who are in it for the long haul have to curate their unfairnesses carefully. We need to pick winnable battles.

That said, I hope that by some miracle of technology, my old school principal is reading this and is now sorry for giving me that double detention.

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