The village makes the difference.
Updated: Apr 30, 2019
There are times in this dementia journey that if Jeffrey Dahmer were to show up at the door and offer to watch Mom for a couple of hours, I would grab my hat and coat and flee for freedom hollering back, "Now, you promise not to eat her, Jeffrey? You promise?" But I doubt I would hang around for the answer. A caregiver alone is a caregiver in the isolation zone, and that's the worst part of the job. Last April I wrote that It takes a village... to help someone to the end of their lives, and how we went about building ours. The last two weekends have been an exercise in why a dementia village is crucial to caregivers - as Monsterland descended on Stumped Town Dementia, our villagers, sans pitchforks and torches, were the only thing that kept me from becoming an angry mob of one.
A couple of Thursdays back, Mom began sniffling and sneezing in the evening. By Saturday morning she had a 103 temperature and was super shaky, barely able to walk. Off to the emergency room we went, Mom, The Boyfriend in the Basement, and me. A bad cold I could handle, but the high fever and unsteadiness on her feet scared the bejesus out of me.
Guess what scared the bejesus out of Mom? EVERYTHING ABOUT THE EMERGENCY ROOM! Guess what form her fear took? THAT OF A MAN-EATING TIGER WHO ALSO POSSESSED SUPER HUMAN STRENGTH AND USED IT TO DESTROY ALL TECHNOLOGICAL AND HUMAN FORMS OF LIFE WITHIN HER REACH!
Mom fought, and fought hard, every process they needed to do from the gentlest touch of the stethoscope, to the Tylenol suppository to get her temperature down fast. (Ok, that one came as no big surprise...)
Finally they determined that Mom did not have pneumonia (with the verdict still out on demonic possession), and was good to go as soon as the doctor came by one last time. The professionals vacated the room leaving me and The Boyfriend in the Basement to keep Mom calm while waiting.
Even though they had tipped the bed up, Mom never once stop attempting to writhe and wrestle her way out of it. She would pull herself up using the side bars, cursing and yelling, only to be gently restrained and returned to her original position by the two of us. Lather, rinse, repeat. At one point she threw her legs over my shoulders in attempt to get purchase. Honestly, I didn't even know she could do that! We were physically exhausted with trying to restrain her, and emotionally spent from hours of trying to de-stress her distress.
As she began another attempt to catapult herself out of bed, my temper flared. But before I could shove a pillow over her face and suffocate the life out of her, The Boyfriend in the Basement joked, "Gloria, you are gonna have abs of steel by the time we get you home!"
Mom spit out some verbal jumble of a curse. I, however, started laughing, and wanted to leap over the bed and give him a big, fat, sloppy kiss for diffusing my anger. I was still emotionally drained but we spent the remainder of our time there with lighter hearts, a few smiles, and an occasional giggle at the absurdity of it all.
Last Friday night was Mom's Opening Minds through Art - Art Show, her fourth one. My Aunt Ginny, who we don't see often due to distance, was going to attend for the first time, and I was excited to have her stay a few nights with us, as well as get to share in a wonderful evening with Mom.
Ginny arrived on Thursday. Not having seen Mom in over a month, Ginny was terribly disheartened by her dementia progression, and as Gin has her own health issues to tend to our cousins protectively offered to take her elsewhere for the night so she wouldn't spend an evening in bad spirits. But Gin stuck it out, found pleasure in our interactions with Mom, and was entertained by Barnaby Bones and Olive's antics. All of us were unaware of the shit-storm that was only hours from making landfall...
At 6:30 am Friday morning I heard the dogs crashing and smashing into each other. I got up hurriedly to put a stop to the puppy party, but as I stumbled up the darkened stairs I stepped in a cold squish. In the dim pre-dawn light I saw dark matter oozing through my toes - Olive had had an accident. In fact, Olive had had many, many accidents, all up and down the upper hallway, on the stairs, and on the front door landing.
It seems she had eaten quite a bit of cat litter the night before and apparently it's akin to colonoscopy prep for dogs.
Before we could get the lights turned on everyone was suffering from poop-foot. As Mom had dried poop cemented to her feet, we realized she must have gotten up in the night, been the first to step in it, and then returned to bed. Ginny, The Other Girl, and I joked about how we sure "...like to show a guest a good time 'round here!", and I was glad to see Gin laugh, more at ease than the previous evening. I let The Other Girl get coffee and breakfast while I bustled around preparing for Mom's shower.
And that's when the real fun started.
Mom was ON FIRE about taking a shower; every single step was met with fury, cursing, towel throwing, door shaking - she was leaps and bounds more combative than she's ever been. I finally exited the bathroom in defeat. The Other Girl provided a few minutes of redirection then she gave it a go, to no avail. As we took turns tag teaming Mom (dementia or no - we were determined she would not spend a day with dog shit on her feet), we three kidded each other about Mom waking up as Mussolini, a one-party dementia dictator, and then morphing into Hitler, wreaking dementia destruction on any member of the household who insisted on making her shower.
It was horrible to see her so enraged, her little body shaking with anger, her brain having no strategies left to dissipate her fury, yet I was grateful. Grateful that I wasn't alone that morning. Grateful that with Ginny and The Other Girl there we could make light of this ludicrous situation, have a perspective other than "I hate my life." So one old woman doesn't want to take a shower? It's not the end of the world.
But were I by myself that morning, from poop-foot to furor, I would have felt like it was.
Eventually The Other Girl got Mom to sit down so she could washcloth the poop off her feet before sending her out in the world. We went on to have a Winston Churchill-like Mom show up at her art show that evening, and an aunt who although saddened by her sister's progression, also got to experience her smiles, joys, and pleasures.
Villages are hard to build. A lot of people actively avoid one that's centered around dementia, but if you can manage coaxing a villager or two to you and your care partner's world, this dementia journey will sometimes be an easier ride.