Heading Into Uncharted Territory

I have come to a heartbreaking understanding that we have likely entered the “mid-to-late phase” of Mr. Dewey’s LBD. The hallucinations that hit hard last month are frequent. The incidence of behavior best described as dementia-related psychosis is more frequent, and triggered by seemingly small events.

Yesterday, for example, we were on our way home from our nephew’s graduation in Knoxville. An urgent need for a pee came on. We stopped at a gas station and he got out and frantically sped to the bathroom, just in time. That little moment of panic stuck to him though. I opened the door to the shop, but he pulled me back in and said with great urgency, “We need to get permission!” He pulled me over to the counter and stepped in front of a waiting customer, who kindly stepped back for us. John rush up to the counter and said “WE HAVE A MEDICAL EMERGENCY!” I asked the attendant to just tell him it was okay, which she sweetly did. That seemed to calm him, and we were able to leave the store and get back into the car. He remained agitated for some time after, until we had gotten back to JC, and into our own car and headed for home.

Speaking of agitation, he has been more agitated more frequently and more severely these days. it includes a meanness that I have never seen before, and is the thing that I have been dreading most of all; seeing that sweet, patient, constant man becoming something utterly foreign to us both. It is disconcerting, and heartbreaking. I’m finding this link useful in understanding what is happening, and in both calming my fears and preparing me to help him through these episodes.

It’s difficult to fully appreciate how miserable this must be for him, not being able to see what he sees, how he interprets any given moment or action or comment. I can often see that he is struggling to understand a situation. Heading east from Knoxville yesterday, he and I in the back seat, he was quite conversational, philosophical even, but using language the others of us struggled to comprehend. He spoke the phrase “… I would like my remains…” before trailing off, having lost the rest of the thought. So I asked him, “What do you think is happening right now?”

“We’re going to my funeral?”

“We’re going home! You aren’t dead, you know.”

“Thank Fucking God!” he said, with visible relief. Later, when just the two of us were heading towards home, and still during the agitated state, he asked me to reassure him that he wasn’t dead, then said “And you’re not dead.”

“Nope. Not dead.” A few minutes later and the agitation had subsided, and he was my sweet Mr. Dewey again.

One thing has become apparent over the last weeks: he does better when he’s at home. The longer we are away from home, the more confused and agitated he becomes. Spending the last 14 months almost exclusively at home and just the two of us has changed how he acts among people and in unfamiliar territory.

I don’t know if there is a correlation between this “waking up” from the isolation of COVID lockdown and the shift in his condition, but the timing makes it feel so. In addition to the hallucinations, the psychoses, and the deteriorating verbal ability, motor skills are failing, and even eating has become difficult. The physical act of getting food from plate to hand to mouth is difficult, and I’ve found I need to feed him more and more. His ability to maintain his balance or recover from a “toddle” is slipping. All these things point to a shift into this new phase of the disease.

We have an appointment with his neurologist tomorrow, and will discuss this change of course and see what we need to do to navigate through it. There may be dragons ahead.