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The Ever Present Question

My wife askes in the kindest of ways “Do you feel like it is getting worse?”

In this middle stage of dementia, I manage to track my cognitive abilities multiple times a day because the analysis defines the strategies, the plans ahead.

Especially after exercise, there is the fool’s gold syndrome where the fresh flow of blood through the brain brightens the day, makes you wonder whether dementia has lost its punch or maybe is even transitory. The temptation is to plan the day like a normal person filled with tasks and people. But if I do, I’m always sorry — trapped, exhausted, and upset that I took the bait.

The standard default position is heavy headed like I got up from a deep sleep and have yet to throw off the cobwebs. Then there is the uh-oh moment when a bit unaware, I find myself in the deeper snow that you thought. Unable to move as nimbly and panicking a little.

The unfriendly cognitive position occurs when I know I have run aground. I am unable to process the words coming from you or leaving me, and so, therefore, I am unable to track the conversation. I told someone yesterday that I was beginning to not be able to track his story and it would be best to abandon it for now. His reply was amusing. “Let me just finish this one part”. Nothing left in the mind but muck. Not even the ability to reflect that it is muck. You are in the muck, period. Like the out of control feeling when you are sliding on ice in your car in a place you have never visited before. And of course, in this metaphor, you are in the car alone. Keeping it together is a little tricky. You know that hanging on is important, but you don’t know how to.

So when my wife asks is it getting worse, the measure is reflecting the frequency, proportionally, of these various dementia states. I told her that using this model, I knew it had progressed in the past three or four months. The changes weren’t A-Ha moments, but a gradual change of scenery. It’s a bit of a balancing act, watching what I can influence and remember that in a larger view I can’t.

I joke out loud that I will never win another marital argument. First, I can’t process the give and take fast enough. And usually, at the critical point of advocacy, my wife will use dementia. “You are not remembering this correctly”, she will say. What am I going to say to this? Zero is the answer.
But on a high note, if your family is asking is it getting worse, you are probably in the early stages and the changes that you feel are written on your forehead in thick magic marker, are not discernable to another person. They are fighting their own battles.

The scary part is when the episodes of confusion become so frequent they run together and form a new reality. We have nothing to compare it to, so it becomes real. Then they won’t need to ask the question anymore.



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