What exactly do we do now?
As we were packing up Mom's stuff to bring her back home from memory care, I asked The Other Girl if it was okay to threaten Mom with moving her back to memory care when she got dementia-naughty at home. This plan was met with a firm negative. I sighed in defeat. It was all I had come up with.
But my sister had more humane ideas for our re-entry to 24/7 care (suck up). You see, the issues that prompted moving her to memory care are all still there: the increased confusion that requires heroic feats of patience, the progression into incontinence territory that demands one (literally) tread lightly through our days, the heightened anxiety and anguish that has to be countered with a survival-mode cheeriness that leaves me gazing longingly at a coiled rope in the garage, directly under a support beam - those are all still very much in play, and as it's dementia, they are only going to get worse. Bringing her back home isn't a "cure" for any of these behaviors.
So we assessed our options and The Other Girl came up with a strategy: we will keep her home through the holidays, utilize all the respite care available to us, and reassess the situation in the new year.
We set this plan in motion by returning to Thelma's Place for respite, but instead of two days a week like pre-memory care, we have ramped up to five days a week post-memory care. That buys us free time from 10am to 4pm each weekday. (If you aren't aware of the true angels at Thelma's Place, now fully integrated as an inter-generational daycare, read this post, check out their Facebook Page, and then enroll your care partner, or find the equivalent in your area.)
We are also searching for in-home care one night a weekend. The Other Girl will be working her restaurant job at the coast on Fridays and Saturdays, but I desperately need to have a weekend night off to still feel alive and connected to friends.
Unfortunately, in-home care is risky. We've tried it before. Agencies don't let you interview the care giver until they're in your home so if they drive both us crazy too damn bad until their shift is over! And it's expensive, especially overnight on weekends. I'm considering posting for a caregiver on Craig's List, but that seems so daunting; I don't want to worry about our stuff get pawed through or stolen, or figure out how to do a back ground check. I'm exhausted from problem solving every minute of the damn day. But that's at the top of the list the next time a second wind blows my way.
So that's our plan. I don't know if it's gonna hold through December. The Other Girl left on her birthday vacation to Portugal on Sunday. (Good for her! Boo for me.) So, I'm only on day 3 of my 17 days without her and as of this moment, I'm ready to put Mom in memory care, or a group home, or a burlap sack and toss her in the river RIGHT NOW.
Yesterday I woke up to a poop smeared kitchen towel, on the kitchen counter, with a big hunk of poop sitting on top of it. As I hustled the towel to the toilet to shake it out, I realized there were smaller nuggets of poop under it which I inadvertently scattered on the carpet leaving a Hansel-and-Gretel excrement trail all the way to the bathroom. "In case you can't find me, Mom, follow the feces!"
This morning it was pee soaked carpet in her bedroom - pee soaked panties in the bathroom. When I got her out of bed she began wiping her who-ha with the night gown she was wearing. When I finally got her to stop that, she grabbed a bathrobe first, then a sweatshirt to continue her lady business.
She refused to sit down and use the toilet before breakfast, peed herself more while eating breakfast, fought me long and hard before getting in the shower, then poop fell out of her as we were toweling her off after the shower. She threw her toothbrush in the sink, refused to put on shoes, and throughout the whole morning would only stop crying long enough to glare at me with true hate in her eyes.
This afternoon went well until we got to the grocery store where Mom resisted getting out of the van. Once she got out, she wouldn't take a single step away from the vehicle. Finally I threw up my hands and said "Fine! Let's go home then!" only to have her recoil at the idea of getting back in the van to leave.
Back home, we topped off this marvelous day with Mom pulling squishy clumps of crap out of her butt and throwing them on the floor next to the toilet while I attempted to stop her, or at least wipe her hands in between dung dives. She fought that too. And that, my friends, was the last straw. I. LOST. MY. SHIT. The only thing that saved us was The Boyfriend in the Basement who, upon hearing me scream at Mom and throw things, came up and rescued us both by taking over Mom, allowing me to get out of the house until I could calm down.
He said to me later "You are her daughter. You need to remove that from the equation and be her caregiver instead." And he's right. I took it all too personally. I blew it. I blew it big time.
As I sit here with 409 disinfectent fumes wafting through the air, waiting for the first load of poop laundry to finish so I can start the next load of pee laundry, I honestly don't know if I can pull this off for the next 15 days, let alone through the remainder of the year.
And yet, as distraught as she was after pooping all over the kitchen yesterday morning, I had my caregiver wits about me (unlike today) and managed to turn it around with the Banana Phone trick, sharing a genuinely hearty laugh with Mom, one that had her shaking her fist at me in mirth.
And I fall in love with her all over again.
I have been more amazed and proud of myself as a care giver than anything else I've ever done, finding depths of patience and skills of compassion I would have never known was in me if not for this. Then there are days like today when I am troubled and tormented by a rage against my mother I didn't know I was capable of. I know the adage, "Hate the disease, not the person," But I failed miserably in that today.
We all do our best with dementia, both those who are in the throes of the disease, and those of us trying to help them, but my current best is not good enough for her, or me. I'm holding on by the skin of my teeth, willing myself more kindness, perseverance, and a back bone dementia will surely bruise but not break. Until her last breath Mom deserves her right to pursue happiness, even if dementia only lets her have it occasionally, and briefly, with her caregiver daughter on the banana phone.
