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All These Precious Things

Updated: Jun 16

When we have dialogue, try to remember, it's me talking. He responds. He listens. Giggles sometimes. Sometimes he scratches the spot on his head that, if his finger could go through his skin and skull and touch his brain, it would land directly on the haziness the MRI showed in 2017 when he was diagnosed with aphasia. He scratches the spot that gives him trouble. The spot on his brain deteriorating from frontotemporal dementia.

I can't not notice this.

 

"Just cough."


He can't clear the gunk out of his throat. Again. He choked. Again. On water this time.


"Cough. Like this." I act out a cough. "Do that. When you breathe in, cough out."


In a perfect world, he wouldn't be choking.

In a perfect world, he would remember how to cough.

In a perfect world, his hands wouldn't show signs of contracture.

In a perfect world, I wouldn't have to mix 6 scoops of thickener instead of 5 scoops into his drinking water.

In a perfect world, my husband would still be the man who swept me off my feet with a boat ride across the strait, with late night calls, with dancing and flowers and shows of affection that would make Hollywood blush.

In a perfect world, my husband would not have this horrible disease--a disease working to erase every last bit of him.


I stand him up, lean him over the bathroom counter and we do the Heimlich maneuver again. I have taken to the maneuver even when the coughing is from drainage and not from aspirating on food or water.


It works. It clears out the esophagus enough.


"Feel better? That always seems to work, doesn't it?"


He giggles. The giggle is more like an acknowledgement than one of humor.


Both hands balance him still. They fist with contracture.


"Give me whatever is in those pinky fingers." I talk to him as though he's my child.


He giggles and drops the invisibles (that's what we call them now)...


I have no idea what you're giving me. Do you know that? Can you see it?

He giggles.

Well, I can't.

And I put the invisibles into my pockets.


"Someday, down the road, these things all appear."


He understands me. His face is awestruck by the notion. He looks as though I've said something magical. He believes this will happen one day.


And the mystery of the brain continues to unfold. He can't speak but we communicate.


I ask him what he wants. He either snubs me or giggles. A giggle is a form of yes.


I point to food on the bedside tray table. "This or that?" And he stares down what he wants. "Okay. That." And he gets it.


To compare, it's similar to how Joey communicates with me. By staring at what he wants so hard--with Joey that means anything I am eating--and so intently that whatever he wants finally makes its way from my hand into Joey's mouth. Yes. I'm that big of a sucker.


Back to meal times. They take anywhere from an hour to an hour-and-a-half. He chews with deliberateness. He knows choking is bad. He sips his thickened water with deliberateness. And yet, even as careful as we are, he chokes.


If we follow the ALZ.org clinical stages of dementia, he is in the final stage, stage 7. Additionally, there are six substages, A through F, in this final stage. His dementia lands somewhere between D and F because it swings back and forth. Each stage has an average time duration.


"The most frequent proximate cause of death in persons with Alzheimer’s is pneumonia. Aspiration is one common cause of terminal pneumonia. Another common cause of demise in AD is infected decubital ulcerations. AD persons in the seventh stage are also vulnerable to all of the common causes of mortality in the elderly including stroke, heart disease, and cancer. Some AD persons in this final stage appear to succumb to no identifiable condition other than AD."

"That's right," I say. "I'll go into the closet and find thousands of your treasures in all of my pockets because someday they will all suddenly become things I can see."


Again, he giggles.


Now faith is the substance of things hoped for, the evidence of things unseen. ~Hebrews 11:1

God bless you all.









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GK Butler
GK Butler
6月22日

💓 I see now.

GK

いいね!
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