Over the last several weeks, I’ve written about three episodes of confusion:
- when I was following directions to put a cabinet together with my son,
- when I was finding my seat in the train, and
- when I was figuring out what happened to the laundry.
It’s starting to sink in that these episodes are, indeed, getting more frequent. I’m beginning to get some sense now of what it might be like to be confused much of the time and, even more difficult, not be able to snap out of it on my own.
I have a baseline level of mild impairment that I’m used to: I lose things constantly. I frequently can’t find the right word. I not only forget to keep appointments but, when reminded, forget I ever made them. That baseline level of impairment is slowly increasing certainly but very slowly and only over a period of months.
The episodes of confusion are completely different: One minute I’m at baseline, the next minute I’m bewildered by what’s happening around me; and five minutes later I’ll be just fine again, even curious about what just happened to me. The episodes always seem sudden; they come out of the blue with no precipitating events. I’ve never noticed myself sliding gradually into one. By the time I notice, the confusion is full-blown. Returning from the deeper confusion to baseline, however, seems to take a bit longer, perhaps a few minutes.
I’m getting used to these spells and they haven’t bothered me much so far. But as they get worse, I wonder if it won’t be much more difficult for my family, friends or caregivers who will have to relate to me and respond to me without being sure of my level of confusion. This variability in symptoms is a hallmark of Alzheimer’s. So if you were to experience me during one of my episodes, you’d have a tendency to relate to me the next time as if I’m always so confused. On the other hand, if you experience me only at my good, baseline times, can you be prepared for my cognitive level suddenly dropping through the floor? Can you trust me to handle money or the finances or to take the vacuum cleaner apart to fix it? The underlying question will be: Do you treat me and trust me as if I were at my day-to-day level and, if so, how do you factor in the fact that I may become suddenly more confused? Life together may be a real roller coaster.
In this context, think of the decision about when to stop driving; it may be the most difficult one in the entire illness, especially for men. Right now, I’m a competent driver; people are comfortable riding with me and no one would think to suggest giving up my driver’s license. But what if I’m in the middle of traffic going 70 mph on the Interstate when I have an episode of confusion and I don’t know quite how to handle it? Should I be evaluating my driving ability on the basis of my baseline impairment or on the basis of how I am at my most confused? All logic tells me to that I should evaluate myself for driving as if I were at my worst.
That’s a scary thought!! But maybe I need to face it without flinching.