In his shoes

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.

Is there anything harder?

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.

Birds gotta

There is a compulsion inherent in  Burt ‘s symptoms.

Erratic behavior and disorganized thought lead him into patterns.

  • “I love you.”
  • “You’re the worst. Well, look what you did to me.”
  • “You nearly killed me there.”
  • “You saved my life.”

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.

Anxious

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?

A deep dive

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.

A new low

Every progression brings a new dread. Burt has Lewy Body. I remind myself, and things could stabilize or revert to an earlier….

There was a glimmer of that last night. For all his earnest outpouring of ideas and his studied tone, most of his talk made no sense.

As it is so often these days, our conversation was overlaid with the bitter taint of my sadness.

He has hit a place where he no longer realizes that his thinking might be muddled.

The other night, for instance, stuck in his recliner, he couldn’t figure out how to get up, yet he said, “I am up.”

Everything looks normal from where he sits.

In many ways, I am glad for him.

He no longer carries the burden of “What’s wrong with me?”

My job is to accept what he says at face value, try to deflect the obsessive delusions that might trouble him, and to find the misplaced necessaries.

It helps if I am cheerful and refrain from yelling at him.

Ms. Fix It

I am a fixer. I feel it as a plus and a negative. My husband’s dementia is leaving him more broken each day.

I can’t fix that. How can I help? How can I avoid doing harm.

I am out of the house, joining an aerobics class or having coffee with a friend. He calls or these days has his aide dial for him.

With each sweet sad call I receive from him I see how much he is breaking, reason and sense falling away.

He plays with time (and each call has a focus on time) as if it were a toy and a mystery. Running the winder on his beautiful Hamilton watch as if it were a rag doll. He calls to ask what time it is.

He asks when I am coming home and when his aide is leaving, or that is what he means although he asks when she’s coming.

He calls to find out “just one more time” when “they,” his lone PT who has Capgrased into a couple of guys, are coming. Each time he asks he receives the answer with the same astonishment, “at 4pm,” he repeats, voice rising in surprise.

Like me Burt’s OT likes to fix things. It’s in her job description but it’s also in her modus operandi.

Our apartment and Burt’s equipment for daily living have benefited from her interventions.

She can’t fix his dementia or make his diagnosis go away.

She can  implement small changes that add comfort to his care.

I can gather inspiration from that.

Cognitive decline

The way in which Burt’s reasoning works these days is odd and irregular. Much of his thought processes take him in divergent directions. He sees no contradiction.

If I weren’t so stricken by his illogical theorizing, I would find it all quite fascinating.

As it is, his decline (euphemistically and paradoxically called disease progression) just brings me sorrow and sadness.

Burdens. Joys.

Gratitude is a “thing” for the 2020s Era, but it is also a very powerful tool.

This way of seeing and being opens us up to joy and enjoyment.

I feel free to be grateful even for my sadness and my sorrow.

With that, I feel even greater gratitude for pleasures, joys, and enjoyments.

Burt is the one suffering, but he shows gratitude and appreciation.

The journey is hard, but I experience it upright and [for the most part] standing steady.

I am grateful to have outlets; I also appreciate the others in my support groups who work to understand their journey in caring.

I write, I journal, I try to make sense and keep perspective on our journey.

I am also grateful for the gift that my skill at writing has become. I use that gift not just to document our life but in poems and essays beyond that.

This poem belongs in both my worlds. It’s sad, and it brings me joy.

Your memories

He told me all his stories, so
That when this day came, I’d
Be the one who remembered.

This older poem touches what  meaning memories play in our lives. They connect us to our shared past, but they are not who we are or were.

I remember 

Memories, his,
Mine, and ours,
Overlap neatly,
Sometimes, other
Times the edges
Don’t match, the
Fillings spill
Out, fall away
And crumble, as
Ephemeral as the
Air and passing
Into a jumbled
Past, celebrated
But forgotten.
Remind me when,
Remind me what

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