Thanks to Oregon Care Partners, I attended a care partner training seminar in June with none other than dementia rock star Teepa Snow! If you're unfamiliar with this energetic burst of dementia advocacy and care giving savvy she is the founder of Positive Approach to Care, and in possession of a lifetime of personal and professional experience with cognitive decline. AND she is my go-to for caregiver YouTube vids when we're sinking into a stink-hole of dementia fails.
Learning from her in person, I realized her true gift is taking what you already know about dementia caring for your loved one, and tweaking that perspective enough to open up new ideas to improve the dementia journey for both of you. For instance:
Let go: of how it "used to be," of how it "should be," of how you "should be"
"Be a partner, not a boss. Be an advocate, build a team."
When your brain's been repeatedly bounced off a caregiver brick wall "back off, change something, and try again."
There's were lots of practical solutions presented:
"Substitution. Not subtraction." When taking something from a dementia person, (like when Mom's about to throw a banana peel out in the yard), hand them something in trade at the same time ("Hey, Mom, will you fold up this dish towel for me?").
Visual cueing with your hands when there are activities you need your dementia person to do - like mime taking a drink or pulling off your shirt as prompts for these actions.
Approach and hang out on a dementia person's dominant side (dominant side usually corresponds to being right or left handed). Also, try to remain to the side of their body as opposed to directly in front of them which is perceived as blocking/aggressive.
In addition, Teepa also peppered her talk with continuous statements of encouragement and support:
Dementia caregiving is very hard work! - CHECK, totally know that
Your emotional state affects the person you are caring for - CHECK, totally know that too
You are just as important as the person with dementia - Oh... uh... Wow. I haven't felt like that in a long time. Did I ever?
Using plain talk, partner work, dementia scenarios, and lots of humor, Teepa kept the all-day seminar lively and informative. She covered so much, including when to acknowledge that family caregiving may no longer be the right choice for either you or your dementia person.
Her words were "Not give up, but let go of care." That struck me as a truly generous gift to bestow on my fellow caregivers in attendance, and I imagined there were people in the audience who needed to hear that particular advice at that particular moment; a blessing of permission to make a tough decision.
But for myself, I was inspired to care partner greatness! I headed home to start my Mom shifts for the week armed with renewed vigor, bolstered strategies, and new tools to launch myself on the path to caregiver glory!
Four days later, this happened:
(Warning: An "F" bomb and a bit of food stuck in my teeth
may make this video objectionable to some viewers.)
That's when I realized reacting to my mother with seething scorn, rather then responding with caring compassion was no longer an uncommon occurrence.
That's when I realized I'm the one who needs to come to terms with the fact that Mom and I are no longer good for each other. That being her hands-on caregiver isn't working.
That's when I realized Teepa Snow was talking to me.