by Samra Jones Bufkins
I’m going to start “Caregiver Logs” (inspired by Star Trek’s Captain’s Log) as part of this blog, describing incidents and behaviors we experience. For the first few posts I’ll be going back in recent time.
I’ll venture into the TMI zone here, because people need to know that hostility, agitation and aggression are very common aspects of dementia. Most of the time, however, my hubby is his usual sweet self. But then, there are those unexplainable times, like this one.
We’ve had a frustrating toilet clog (I think he put a night light in the toilet) that I was going to work on in the morning. Last night about 10:30 I gave hubby his night pills. Then he went toward the master bath and I said “it’s stopped up, please use the other one.” He said “ok, thanks.”
After he’d been gone forever, I went looking for him. The round trash can from the living room was in the foyer and the door was not closed and latched–somehow I didn’t hear the little alarm when it opened, either. I looked for Bill and found him in the kitchen. He had taken his red t-shirt (which he had put on OVER the orange flannel shirt he was wearing) off and put on a blue one from the laundry room. As usual, all the lights were on, including in my office.
I took him back to the bedroom and went to use the other bathroom. When I returned he had messed up the covers really bad and was laying on top of them. When I suggested he’d be more comfortable under the covers, the got THAT LOOK on his face and yelled, as if it was my fault, “I HAVE TO PEE!!!”
I said to use the other bathroom because this one is stopped up, and he said “ok.”
He returned a few minutes later and I went out to turn off all the lights AGAIN (note to self–get more Alexa-operated switches.) I came back into the bedroom and he was not in bed–he was just sitting on the broken toilet. (I was only gone a few seconds.)
I yelled “NOOOOOO!” and told him AGAIN that toilet does not work and he said “ok,” and pulled up his pants.
“What am I supposed to do?” he cried plaintively.
I said “use the other bathroom.” He screamed “I DON’T KNOW WHERE THAT IS.” (It’s the one he uses the most, because it’s closest to both the living room and kitchen.)
I took him by the hand to lead him to it and he resisted, pulling back. I finally got him into the living room and was heading toward the powder room when he jerked my arm and said “F*** YOU, B****!”
I couldn’t say anything, so I started to try to lead him again, and he grabbed both of my arms, and screamed “I WANT TO GO TO BED, B****!” Somehow I remained calm and said “I brought you out here because you said you needed to pee. Do you need to pee?” He said “yes” so I led him toward that bathroom again.
After he came back to bed, I went out to turn all the lights off AGAIN. I was gone maybe 15 seconds. When I returned, He was headed for the toilet in the master bath. Once again, I took him to the other one. This time I waited in the living room, then when he came back, I turned off all the lights again and checked the toilet. I saw no evidence he used it. The water was clear and the tank was not refilling (he usually doesn’t flush, anyway.)
When I came back into the bedroom, he had kicked the covers off again. I asked him why, and he yelled “IT’S HOT IN HERE.” It’s the same nighttime thermostat setting I’ve had for months, and he’s usually cold.
I got in bed, finished watching Colbert, and fell asleep with a purring kitty by my side.
At 3 am I was awakened by Bill rummaging in the closet. I asked what he was doing, and he said he needed some clothes. I got up, showed him where his pajamas were, but he didn’t want them. He wanted his jeans and another flannel shirt. Because I wanted to go back to sleep, I let him put them on and go to bed.
I still haven’t found the pajama bottoms and flannel shirt he wore to bed–probably wadded up and stuffed into a bookcase. Yes, hiding clothes is a thing now, too.
At 5:30 am he woke up and was wandering around the room. I turned the light on and the jeans were now inside-out. I asked him why he was awake and he shrugged. I told him we needed to sleep more, and he came back to bed.
Getting him spiffed up to go anywhere is tough, but that morning he had a doctor’s appointment for the clinical trial he’s been accepted into. It’s for a double-blind, placebo-controlled investigative drug they HOPE will help reduce or eliminate this kind of agitation.
So do I, and I hope he gets the drug rather than the placebo.
The study is also charting caregiver reactions to these behaviors, so I get a thorough interview and assessment each time we visit. FINALLY! Somebody in the scientific/pharmaceutical community is looking out for us.
Author’s note: Agitation and confusion are often indicators of a urinary tract infection (UTI). I had already ruled this out using home test strips, which can be found in most pharmacies where home pregnancy tests are located. The strips don’t test for everything the doctor’s office tests for, but they can help you avoid unnecessary trips to the doctor or urgent care clinic.
The author has not been compensated for the mention and/or link to products cited in this blog.