Burt has obsessed about working for a while now.
I was encouraged this morning when he seemed ready to relinquish his dream of a job. Like everything in our lives these days that didn’t last long.
He developed a new interest in taking in laundry after that and conflated his cousin with the guy who has a job for him.
My expectations of not having to keep burrowing down the rabbit hole are always met with disappointment.
After nearly four years riding with Lewy, I should know better.
Well, yes, it is a good thing that they’re not scary. Burt’s hallucinations are mostly benign. A group of pals and co- workers he’s gathered into our home. They make him feel connected, I think, and less alone.
His dreams and delusions seem, on the other hand, to be frightening. He is always lost without money on some form of transportation.
While he was in the rehab facility, he was barefoot and sometimes naked on the subway just about every night.
With this dream re-emerging recently, I dove into reality. “I was with you last night. I’ve been with you every night. This must have been a nightmare you were having.”
It’s surprising that he was able to acknowledge that it might be the case.
Yes, it was a dream, but how do you stop it? he asked me one night.
He might, in a lucid moment, recognize that they’re not real, but his contradictory brain disease forces him to accept his hallucinations, delusions, and dreams as a reality.
In fact, Burt will acknowledge a hallucination but go back to supporting its reality. It is very strange.
It’s that compulsion to believe what he thinks he sees that is stronger than any reassurance I can give.
I am about to cancel a party I planned for our 32nd anniversary.
Parties have been good to (and for) us this past year. Burt loved his 84th surprise birthday gathering. People interested him, and it was a lively event. He insisted I should have one, too, and was able to enjoy the crowd.
The one I’ve been planning for May seems less auspicious. There’s been a slide for him, and that includes his engagement with people.
Not celebrating our marriage with him and our friends is a loss. His decline, of course, is the bigger one.
I started watching cartoons with Burt because they were colorful with plots that were easy to follow. The default mode for him is to misinterpret much of the action anyway.
His “favorites” like Law and Order were too complex. And for my two-cents too violent. I worry about how he’s processing events on Columbo.
We watch some old sitcoms, although there too he’s not always on top of what’s doing. He loves The Three Stooges. Yes. Violent slapstick, but nobody gets hurt (except arguably Curly).
May I digress a moment: last weekend he was watching his “boys” hit each other over the head while I was on the phone with his daughter. She said it was good to hear him laugh. “He’s got a great laugh.”
Lots of the cartoons we started with, like Tom and Jerry, were slapstick and full of (cartoonish) violence. Then along came Bluey.
Not only do they tell sweet stories, but the voices are all so pleasant.
In truth, when asked if he’d like me to put on the cartoons, Burt always says, “I’ll always watch them with you.”
And as with all things, Lewy, some days he’s more attentive than others.
The things that annoyed you when he was well will still be maddening when he’s ill.
You are not a saint, and your spouse’s diagnosis does not make you supra- human.
Leave the saints to religion and on tapestries at the Cloisters.
Cheerful caregiving is an art and an act. You can do it. You are an artist.
The above is a peptalk – to myself – and a prayer of contrition.
I transgress too often; my emotions make me lose my patience with Burt’s symptoms.
Oh, let me be honest when I am impatient it is with (aka against) Burt. I take my anger at the disease out on him. I regret it and rail at myself.
It is difficult living with this disease.
It is so complicated being human.
By way of apology for my impatience, I also dedicate a poem I wrote today to Burt. It’s called Lunatic. In truth, Burt has proved inspiration to many other poems, including this one about days that are extraordinary.
It was a purely serendipitous occurrence. I got up to go to the bathroom in the middle of the night.
I leave the lights off, not to disturb Burt. My hand accidentally brushed against the switch. I turned it off again, and the sudden darkness blinded me.
I reached for what I thought was the sink to steady myself and felt a wall.
When I became reacclimated to the dark, I realized I was touching the far corner of the room.
I experienced complete disorientation. It actually frightened me, if only momentarily.
It was a visceral awakening to how Burt must feel.
Watching your love wallowing in confusion, delusion, and hallucination is hard. Even heartbreaking.
Hearing that somewhere in there, he knows of what he suffers is worse. His understanding may lack exactitude and science, but he is aware.
Commiseration is the best and the least I can do.
Knowledge of his condition is imperfect in every way. It frightens him and casts a pall of depressive brooding over him.
Right alongside his self-awareness are the requests to call his mother and tell him where his father went.
He is periodically jolted into the realization that they are both dead. Likewise, he is surprised (mostly happily so, I am happy to say) that I am actually his wife.
Like with other contradictions in his mind, that fact doesn’t stop him from wanting to call some other wife.
There is a compulsion inherent in Burt ‘s symptoms.
Erratic behavior and disorganized thought lead him into patterns.
We bounce back and forth between adulation and despair.
The hallucinations are so much a must-be that it brought us into a fascinating discussion the other day.
Burt told me that he thinks there wasn’t a fire and that it may have been in his mind. He asks for the word that describes when he sees people who aren’t there.
I assume he will now distinguish between his imaginary friends and lovers and the actual inhabitants of our world.
In that instance, I look forward to not being questioned, “Who’s the guy? You sit right next to him. He’s here all the time.” Or “Come on, you know her. The girl who looks like you. What’s her name?”
Within minutes of his realization, he is engaging with that nameless guy. Right after making his conclusion about hallucinating, he started talking about (and to) some guy and the other girl (who looks like me) in the apartment.
His brain is breaking, and he has these symptoms. He hallucinates. He repeats illogical stories in which my care for him is lifesaving or not. Time is not just not of the essence; it’s a complete mishmash. He has Capgras syndrome; not only are there multiple wives, but his OT no longer works alone, so now it’s “when are they coming?”
His awareness and insight that any of this might not make sense is fleeting. They were back. At first, just those two. I know there will be more. It was out of his control. He couldn’t help it.
Burt’s anxiety is a symptom of his LBD. My anxiety is also a symptom of Burt’s LBD.
There are so many potholes on this wintry road of ours.
Presently, I anxiously await the total eclipse. Anxiously, but not in a good way like the media paints it.
I worry.
Will I be able to keep him safe and prevent his staring at the sky?
Will the darkness increase his agitation and anxieties?
Will hallucinations increase the barrier we experience in communication?
Burt’s dementia started with explosive symptoms from the get-go.
He was listless for a while but quickly proceeded to mimic schizophrenia.
[This in no way excuses the doctor who offered this up as a diagnosis. As the neurologist’s team said 80 year olds don’t suddenly become schizophrenic.]
These next phases included delusions and Capgras Syndrome.
We were standing in the lobby together when he asked a neighbor if she’d seen me. He was constantly misplacing me.
Sometimes, when he looked for me, I would say, “Let me see if she’s back from the store.” I would come back through the door and be recognized.
Other times if he found me, he assumed I was one of multiple women, all of whom claimed to be his wife.
He welcomed my company and told me long stories about his career and life. He flirted.
He wanted to go back to his other apartment. This entailed walking around the hallway and back to our door. He would discover that this was his home.
He resented the little people living in our apartment. They were not only using his electricity but also impinged on his privacy. In anticipation of our move to a larger space upstairs, he gave them a talking-to and forbade them from following us.
I had worried what to do if these hallucinations didn’t clear out with the change. To my astonishment, Burt found a way to solve that problem.
I assume that some of his medications helped in reducing some of these early symptoms.
Unfortunately, time and the progression of his disease have brought Capgras, hallucinations, and delusions back into our lives. His illogical thinking is more pronounced as well.
I had been basking in improvements and happier experiences. I can only hope that this dip will bring an upturn and not be with us for long. Or maybe it will be what it will be.
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