What do we say to the God of Dementia?
Updated: Dec 9, 2020
Last week dementia reduced me to nothing more than primal rage; spitting bitterness, hissing hatred, flinging frustration at any who dared come near - hoping to infect all within my sphere in some twisted effort to decrease my suffering by increasing everyone else's. I'd say that's an epic dementia fail. Hell, that's an epic humanity fail.
But I'm not built for constant anguish. My temperament is not compatible with days awash in tragedy; grieving for Mom, for myself. My nature wants to nurture my hopes and dreams; comfort Mom's misery and fears, not be chained deep down in a dungeon of mourning for what was but can no longer be - for her or I.
Mom wants to be dementia free. Not gonna happen. I want to be taller and the mistress of an indestructible fire-breathing dragon so I can wreak havoc on all who have ever opposed me. Also not gonna happen. (Which means you ex-boyfriends can now breath a sigh of relief.)
But what did happen was an outpouring of empathy, words of encouragement, and a few flat out "Quit your whining and Arya-up, sistah!" responses after last week's Care Surviving post, from friends near and online communities afar, giving me the leg up I needed to square my shoulders, conjure up my sunnier side, and get back in the ring to slay another dementia day.
Besides the confidence boost I got from the peanut gallery, this caregiving upturn was also aided by getting a lot more sleep this week, and with more shut-eye I was able to rise up every morning as soon as I heard Mom moving around, effectively nixing the pre-dawn incontinence by wrangling her half-awake self to the toilet pronto. Another plus? Our little home town threw down a heap of cool, made-for-Mom events which made keeping her engaged (sometimes happily... sometimes not) a lot less challenging.
We attended a free dress rehearsal for dementia folks and their care partners of the Oregon Repertory Singers concert "Shadow & Light; An Alzheimer's Journey" by composer Joan Szymko. Using interviews and research, Ms. Szymko created a masterful work that bespoke the pain and hardship of cognitive change while illuminating the beauty of loving and caring for someone with dementia. It was fantastic.
My one criticism: If you're going to offer dementia folks and their carers a free opportunity, don't do it at 7:30 at night! Sundowners is either ramping up, or the day's energy is quickly waning.
Mom was anxious when we got there, finally relaxed into the music, and then fell fast asleep prior to intermission. Doh!
The following day we hit the Northwest Quilting Expo. Mom has made so many beautiful quilts in her lifetime I was sure a stroll through exquisite traditional and modern quilts would rock her world. Well... not so much. She did enjoy touching as many quilts as she could before we were scolded mightily that "pawing at" the exhibits wasn't allowed (she's very tactile these days and as this was my first quilt show I didn't know museum rules applied). And she was pretty enamored with lunch, the hot dog being a huge hit! But she turned sour quick with my attempts to wipe ketchup off her hands and face.
The quilt show wasn't the huzzah I was going for, but I did have fun forcing her dementia brain to "Stand still, Mom!" in front of a multitude of quilts so I could take her picture. An afternoon of being tortured by her daughter might not do much for Mom, but it entertained the crap out of me!
"This is your brain on dementia."
(Approximately the 335 quilt that I posed Mom in front of.)
For the last couple of weeks I had been hoping to take Mom to the Downton Abbey movie as the PBS series was a favorite of her and Dad's, but was lamenting to MotherMinder that I suspected our days of sitting in one place for a two-hour stretch were most likely behind us. MotherMinder immediately suggested we all go together - genius! So, with the exception of a few squirming-in-her-seat outbreaks (subdued with double-sided hand-holding and expertly timed distributions of M&Ms), MotherMinder and I kept Mom in the theatre and mostly awake for the whole film!
After my miserable caregiver performance last week, I know what my dad would have told me, "Who ever said life's fair? Life's unfair. There's plenty other situations out there way more unfair then this one. Get over it. Get on with it."
Or in other words, "Not today, God of Dementia. Not today."