Growing older always involves some kind of loss. For my Mom, it meant giving up her beloved car. To Mom, a car has always represented freedom and independence. She fancies herself as a kind of Canadian Thelma or Louise – ‘I’ve had it up to my ass in sedate!’ would be her motto (that’s a line from the movie). I know that for her, looking out the window at an empty parking spot below makes her feel sad and powerless.
I still drive. I have my health. My particular sense of loss comes from letting go of my role as our son’s primary caregiver. My entire adult life was spent looking after our children, especially Nicholas’ high needs. I was his caregiver, but I was also ‘CEO of the Nicholas Wright Corporation’ – I was expert in advocating for him, managing his daily care, coordinating school affairs as well as therapies and home helpers. Caregiving was my identity.
Now, Nick lives in a care home with a fabulous group of young and strong professional carers who are also friends. I no longer have the strength to re-position Nick in his wheelchair. I can’t recite his complicated medication regime anymore. My confidence in giving our son the care he requires to live and thrive is shaken – I can’t do it anymore.
So, what is my new role? I’m not sure. One thing I do know: since Nicholas moved out of our home in the summer of 2011, I imagined that I could still look after Nick – I just didn’t have to at the present. But until recently, I thought that if anything at his home went awry, I could bring our young man back home with us and things would go back to the way they were, with me at the helm. Now, I know that’s not true. I’m just too old for the job and that frightens me.
I’ll get used to these new thoughts in my head, I know I will. And a good part of feeling comfortable with my own frailty is trusting those who are looking after Nick now. I need to remind myself that I do trust everyone on his care team and I need to tell myself it’s OK to take a back seat. Because magical thinking and caregiving aren’t great companions. But amid the harsh realities of aging and shed identities, there has to be laughter and sometimes, the opposite of sedate. For that, I take my lead from Nick.
Donna Thomson is a caregiver, author and activist. Her book, The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (House of Anansi Press, 2014) is available from all major booksellers in the USA and Canada.