Dementia Exiled: Part 2
Updated: May 16
Shelter from the storm without. No shelter from the storm within.
From what I know of refugee camps, we had a pretty great set-up during our exile! There was light, there was heat, there was a clear circular path that Mom could tread from kitchen to living room and back, and as we constantly kept forgetting to pick up the cat food bowls, Mr. Bones was utterly thrilled at his change of fortune.
We also had the kindness and humor of Julie and David, along with David's cooking and Julie's extensive wine cellar coupled with her overwhelming enthusiasm for Girl's Night on the porch each evening after Mom went to bed, our glasses brimming with liquid friendship.
We kept our pandemic rigor up when we arrived, but as Mom would not keep a mask on we gave up soon thereafter, tossing social distancing to the wind as well as our clothy coverings for the remainder of our stay.
But for all that was wonderful there was still a dementia mom in the house ready to wreak homespun havoc. The first night she touched everything! I was vigilant, guarding family photos, stacks of work documents, other peoples food/drink/electronics, but boy is she fast when something catches her eye. David got a brightly colored dish towel out per my request and I let everyone in on the trick of replacing whatever Mom got her hands on with the towel.
Right off the bat toileting became hugely traumatic. The adorable little guest bathroom - rubber duckie themed with a clawfoot tub - was a torture chamber for us both. A low toilet (actually, a normal height toilet without the installed booster we have for Mom at home) was our cruelest nemesis.
Repeatedly, Mom would be a half-inch away from achieving a perfect landing, then panic and stand up because she didn't think anything was there, my frustration meter spiking through the roof each time.
And the tub made it impossible for me to maneuver around her to assist in the various activities you help a late stage dementia person with. There were too many stairs up and down to get her to the other bathroom options in the house, so we made do with much yelling and screaming, and a little bit of pushing and kicking thrown in for good measure.
Sunday morning (wifi enabled!) I checked the outage website; the goal post had moved, power would now be restored end of day Monday. That meant another night imposing on Julie and David.
It was also Mom's birthday - all the unopened cards loved ones had sent and the cake mix and frosting I had bought to make her a chocolate cake were an impassable ice and snow storm away.
I called The Boyfriend in the Basement and MotherMinder, both still wrapped in frigidity at home. TBitB had managed to keep a fire going in the living room and used our kitties for additional heat; he didn't want to leave them opting instead to stay put. But MM had experienced an uncomfortable night in the cold and decided to brave the slick streets to make her way down I-5, back to her town that hadn't seen a single snowflake.
That afternoon my friend Pony and her husband brought us a care package from a grocery store run that included chocolate cake mix! The birthday was back on!
Mom, somewhat annoyed and then somewhat amused
during a forced birthday dance with our host.
She seemed to enjoy her birthday with strangers that night, or at least the chocolate cake! After tucking her in bed, Julie and I sat outside watching the second storm pound a fresh batch of freezing rain throughout our region.
That's when transformers started to boom and blow.
That's when the dimmed warmth of a neighborhood in slumber began to flicker.
That's when Julie and David's entire area lost power.
I had just enough chocolate cake and wine in me to not lose my shit. Oh sure, a mild bout of gut-wrenching stress attempted to repeatedly stab my brain with a terror laden "What now?" reverberating through my skull. But my defense mechanisms came to the rescue, replying with a sleepy "I'll figure it out tomorrow" as I snuggled up to a snoring Mom in bed.
Luckily, the power went off and on throughout the night, eventually restored for good mid-morning. Unluckily, things were about to get a lot worse.
I woke at 6:15 am that morning to a freezing room with Mom standing in the middle, pajamas and pull-ups at her knees, holding herself and shivering. When I sat up with a groggy "What are you doing, Mom?" I saw the fast moving puddle of pee at her feet.
I stumbled through getting discarded clothes and bedcovers out of the way of the flood, floundered through a very frightening and noisy toileting session with her, you know, in the actual toilet, muddled through a quick mop up, and finally got her back in the warmth of the bed.
Once we woke up at a proper time and the heat had returned to warm the joint up I did a full-cleaning of the morning's mishap. But that day continued to be straining - now J&D's neighborhood look similar to the one we had fled, last night's ice tearing down branches and trees, turning the snow berms left by the weekend plows into tiny glaciars, impossible to get over and out. We were stuck.
For additional funs the outage website now politely refrained from offering any restoration estimate leaving me with a full-day of walking Mom: kitchen, living room, foyer, kitchen...
The phone call with The Boyfriend in the Basement the next morning included a few appeals to start spending the nights with us, and not because he was running out of firewood, but because I needed help with Mom (uh... World's Worst Girlfriend). But to no avail; his days were spent trying to get an enormous tree limb off our carport, and Sir Sarcasmo and Ms. Wonderpants were kinda losing their shit in the cold and dark. He couldn't abandon them.
But then Mom passed out.
After a futile call to the power company (screw the website I was now going straight to the source), after her oatmeal and meds, after toileting and getting dressed, I was following up breakfast with a plate of sliced bananas and found her standing in a corner of the foyer trying to move forward through the wood - and then she just fell back into my arms. The dead weight of her damn near bringing me down in the process. David and I managed to get her to the sofa, her face drained of all color, her eyes blank, her throat gurgling.
I fell to pieces.
I thought it was the end.
When the EMTs got there a half-hour later her color had returned, her eyes could focus, her blood pressure and blood sugar levels were normal. They cleared her as not dying at that very moment and headed out. I called TBitB and told him I didn't care if an entire forest landed on our house I needed his help NOW.
Mom waiting for the EMTs.
Perhaps she just wanted to let this new batch of fellers
know she was in the neighborhood?
The next couple of days went alright. TBitB is always a comfort to Mom and as the snow and ice melted we were able to get Mom out in the van for her daily drives, observing the chaos and clean up while having a much needed break from the hours of continuous shuffling through the house.
Plus we could get to our house during the day, hang with kitties, and use our bathroom that Mom knew even though the ICY COLD TOILET SEAT was a shock to her system, invoking some startling clear expletives from a woman who hasn't spoken a full sentence in years.
I would rub my fanny all over it before it was her turn, but it was still one chilly commode.
Meanwhile, my daily calls to the power company resulted in a piece of new information: no crews had been assigned to our outage. Turns out, it was too big, with too many repairs needed to bring the whole thing back online, so after covering the public services they had moved on to residential areas that could be fixed the fastest.
But with the unfamiliarity of her surroundings Mom's stress levels were rising. It was imperceptible at first but behaviors long since abandoned were coming to the forefront again. My stress level was working it's way on up the charts too. I didn't notice either of us were being stretched to the breaking point until Wednesday night.
Mom fell. Hard.
Landing on her butt and banging her head on the kitchen cupboards. She tripped on a rug J&D had continuously offered to pick up, but I kept saying no as I didn't want to inconvenience them anymore than we already had. (Idiot.)
She couldn't walk, collapsing into us when we got her off the floor.
TBitB and I used a wooden chair as a makeshift stretcher, maneuvering her through the house to the guest bedroom, smashing our own fingers in door frames a few times in the process (youch!). She yelled in pain, and once we laid her on the bed repeatedly fought to get up which gave her more pain.
TBitB was utterly amazing, calming her while gently running his hands over feet, ankles, knees, and pelvis to locate the source of her agony. He thought it her hip. The hospice nurse who arrived within the hour confirmed it: a fractured left hip.
Now, it's one thing to know your dementia loved one's POLST and other end-of-life wishes by heart, but it's a whole 'nother thing to make the decision on their behalf to refuse treatment. Once the hospice nurse explained the process to do imaging on the area to confirm the diagnosis (painful), and doing so was the first step on surgery route (an utter nightmare with Mom's dementia), I said no.
But an option that was available to us was to take her to the hospital for comfort measures only, and keep her there until we got our power back and could take her home.
My stomach had tied itself in a million knots since her fall, my brain a hurricane of fear, "What if I can't keep her still?" "What if there's internal bleeding?" "What if there's brain damage and she lapses into a coma?" "What if Julie never has me over for wine again?"
I had done the best I could to keep her safe outside of her own home, but it wasn't enough. With the option of hospitalization until our power was restored I saw a tiny star of hope twinkle, piercing my firmament of fear. I would turn her over to medical professionals for the remainder of our exile. They would keep her safe. I about fainted from relief.
P.S. After experiencing a week of non-stop dementia action Julie and I decided that the next time I call with some wacky scheme involving her home, before pronouncing her usual consent she will ask, "Are any of you actively dying?" and if I respond in the affirmative that's gonna be a hard "NO!" from her.