Tomorrow, I’ll be speaking with the Parkinson’s Foundation of Manitoba Canada. We’ll gather in Winnipeg and talk about what it’s like to be on this journey. Husbands, wives, those with Parkinson’s, sons and daughters–we’ll huddle in a room, learn a few things, introduce ourselves, and crack a few jokes.
Yes, that’s what I said. Jokes. Because one thing I know is that one weapon you need to fight the fatigue and frustration is to be able to make a joke out of anything, especially the things that bug us, confound us, and are generally considered off limits. And let’s face it–life is funnier when you have someone to share it with.
There will be close to 200 caregivers tomorrow gathered in one room–and it’s my “job” to give them hope, to give them a few minutes of feeling like they’re part of a tribe–they’re in the “in” crowd. Caregiving is cool because it’s a community of people who care, really care.
As an author and speaker it’s my job to point out the ridiculous, the hilarious, the over-the-top so insane moments that come with Parkinson’s. And as I watch these tired souls nod, chuckle, nudge each other, and smile…I feel like I did something meaningful with my own experience.
I’m so blessed to have had such a difficult mother! (Did that just come out of my mouth?) I’m so glad she was a pistol–because she taught me stand up for my self, and at times, to stand against her. Our difference made me define myself, and even the the hurts we inflicted on each other are now a part of our fabric–and they’re part of what I share and weave into my stories.
If I didn’t tell the truth, these caregivers would know. It would be like trying to lie to a front line sharpshooter about the realities of war. I’d be shot on the spot. I think they call this friendly fire.
I’ll share about our numerous mother-daughter fights. How she told me how to drive, how to cook, how to dress, how to make her bed. When she’d get really bossy I used to say that a small country was missing their dictator. We learned how to deal with the tremors, the pauses, the hiccups of “P.D.” as my mother called it–with humor, patience, and grace–depending on what was needed at the time.
I’ll even go up to the edge of decorum and dangle my toes over–share how I thought of rigging up a large spotlight in the corner of the room so she could “go to the light.” And then I’ll take them where they’re afraid to go alone. We’ll talk a little about their own lives, their own dreams-on-hold, and what it will be like later–after their loved one is no longer on this earth–how they’ll love and remember them and incorporate them into their being–and figure out who they are and where they are once again.
And I’ll encourage them to look around–at their “peop’s.” This room is their tribe. There’s someone here they could email or call. There’s someone here who knows a thing or two about their particular current issue–and how we help each other at our points of need.
That’s the power of community. As isolating as caregiving is, it also makes us vulnerable–and that’s a good thing. We meet, come to gether only where our lives intersect.
I know how tired you are. I know you don’t consider yourself good company.
But you need people–and they need you. You can start giving back now (what, you didn’t realize this was part of the bargain?) There are new caregivers every day. They’re your neighbors, your cousins, your friends, and they need your wisdom, advice, and your “here’s what not to do” list. When life presents you an opportunity (and it will), I hope your ears will perk up and you’ll remember this blog, and you’ll know it’s time.
Finding your tribe means you are willing to step into the circle.