Photo Credit: BC Family Caregivers.
Yesterday was the International day of the book. I liked the effort of UNESCO to recognize my work as an author. The organization’s top dog said, “Books give shape to the wealth of human experience”. I like that. She added, “they express the search for meaning and expression we all share”. Even better. “And so books can drive societies forward.” Best of all.
The Dwindling was in part my way to weave all the tendrils of my grief into something that would honour the hard journey my parents took to the end of their lives. But I also believe that in sharing their story i can “drive the society forward” if in only in my own tiny way. The power of one.
But I wish that there was a “Speak Truth to Power” day. That phrase, first used by Quakers half a century ago to help the powerless confront totalitarianism has new meaning now.
As caregivers, speaking truth to power gets us beyond the value of our service, and nudges us to stand for something more significant. Our lived experience gives us the right to speak. Our passion gives us the clout. My goal is simple. Using what I've learned about late life care, make it better for those coming down the road. And some of those future folks are us. Short of a lightening strike or some other quick end, it is likely we will all need some level of care for some length of time in our late life. So speaking truth to power also has something to do with us.
But how to go about it? As an individual, I’m staying focussed on a few talking points and use them as a lens for commenting on what comes up in the news or by other means. My bottom line is that caregivers need and deserve more recognition, respect and support for what they do. And a greying society needs to hone its priorities so it can deliver more appropriate late life health care than has been the norm in the past. I do it by speaking. Blogging. Tweeting. Commenting on line. Podcasting. Not shying away from conversations anywhere. Supporting other caregivers. Being known for my views. Being a thought leader. Being a change maker. Standing for something. Not being shy. But staying knowledgable. And "catching them when they are being good" as well as challenging slips. That's how I'm speaking truth to power these days.
But there’s an alert. That power might push back. It might drag its heels or ignore me. It might belittle my idea. Or shame me for sounding off. . This. fear of retribution too often holds me back.
My mother was acutely aware of the risk of complaining when she was in long term care. “You catch more flies with honey”, she would say. But in silence she also endured service gaps that were unacceptable from my caregiver perspective. Even years later, I feel a flush of frustration when I think back to some of my advocacy jousts. “Follow the channels”, I would be told. “Get in line” "The policy says..." The worst was “Who do you think you are?” which never failed to silence me in shame, for a time. What right did I really have to push for anything to be different than it was? Advocacy was always stressful for me. Caregivers I speak with now agree. They say they walk on eggs and hate being passive, then lash out at care providers and cringe in guilt. They admit that both modes are unhelpful during caregiving. And afterwards, they struggle with residues of frustration or anger.
That’s the power of a book. Readers get new oomph during their caregiving, and feel less ambiguous in their recovery when it is over, They see themselves reflected. “That happened to me too” is a reassuring recognition. They feel less freakish for those hard to acknowledge, let alone reveal, feelings that plague them through and after the caregiving experience. Or the joy. As UNESCO says, books give shape to human experience, including the experience of caregiving. But again, beyond a soothing story shared, how do you answer the call to speak truth to power. Go past the power of one to the power of many?
My blog will look for stories of collaboration in addition to everything else that I find worth talking about. Maybe I’m a voice in the wilderness in seeing that change is necessary and possible and urgent. But I believe by combining our resources and energy we'll have greater impact. When we improve the landscape of care in the here and now, it will be there when we must traverse it someday.
So you want to be part of the change? Bravo! Let me suggest a start. On May 9th, join a Canadian webinar, 10am Pacific Time for just 90 minutes. The webinar is about turning up the volume about the essential role of family caregivers. I hope it’s also about exploring ways to work together to make things better. Three thought leaders, from British Columbia, Nova Scotia and Alberta will share their perspectives. And so, I hope, will all of us.
Register by clicking on this link.
I hope to encounter you there!
it's about the journey
Caregiving was my first and finest journey. Writing this book about it was the next. It lends support to other caregivers who say, "that happened to me too." I'm on another journey now, advocating for caregiving and an activist to bring on better ways of thriving as we age. It's all brought me purpose and meaning, Come along and get some of that too! I'd love to share your stories. Boldly speaking out about our experiences makes us all part of the change we want to see. So
Join me! Let's talk!