Sometimes Alzheimer’s Takes the Wheel

In the weeks since I wrote my last blog post for the Fisher Center, Jeff and I and our Alzheimer’s-flavored world have been sucked into a vortex. Maybe I thought I was taking steps based on a decision-making process, but that’s not quite right, because with each step it became inescapably obvious that I couldn’t have stepped in another direction if I’d wanted to. The fateful march of Alzheimer’s has funneled us in its chosen direction, and here we are.

Jeff still “pants-googles.” (See my last post if this seems a mysterious term!) He also floor-googles and chair-googles. He can read secret messages on almost any solid surface, it seems. In February though, the unfathomable world running through his head began leading him to action. Action which often involved heading purposefully down the street toward a high-traffic road during rush hour. Or taking off on paths unknown in pursuit of “the old weather station” (your guess is as good as mine,) or “the bunker” (where we’re going to hide when the WW2 Zeros begin zooming over our neighborhood.)

Suddenly, my damaged, but formerly gentle and compliant spouse was resistant to my efforts to steer him toward home. And even home has failed to be reliably identifiable as home. You hate to uproot a cognitively impaired person who still knows his bedroom, and can still find the bathroom, but what happens when he can’t? We reached this point in February. Any comfortable chair will do. All bathrooms are the same, provided someone helps him find it. 

And as for the “who” of the “who-what-where” which can become so jumbled in Alzheimer’s-world…I have become any number of “whos.” Sometimes I am Jeff’s sister. Sometimes I am his doctor. Sometimes I’m my own mother, and sometimes I’m the tomboyish arch-nemesis of his childhood. And sometimes I’m me. Sometimes several of me, actually, as he often states that there are “so many Emilys that it’s hard to keep them straight.”

There are a couple of commonly held principles when it comes to the placement of an Alzheimer’s-stricken loved one in an assisted living type of home. One is that almost everyone who eventually encounters this need “waits too long.” The other is that “it’s going to be harder on you (the caregiver) than it will be on him.”

As for waiting too long, I’m not sure what that means, and I’m pretty sure I didn’t do it. I believe it’s an expression of the common problem that many elderly caregivers wait until they’ve done damage to themselves before facing the fact that they can’t do it alone. In our case, Jeff fell off a cliff. I caught him with the scooping action of a quick move into assisted living. The way these ducks lined up in a row was startling, as wait-lists are common, and the need rarely pops up so suddenly except in the event of a health crisis. (Whether that be on the part of the ill or the well spouse.)

As for principle #2, that it’s going to be harder on me than it is on him…gosh, I hope so. It has been less than a week, and my emotional condition has been tumultuous at best. Jeff’s feelings?…Well, I’m going to be guarded in any sort of answer to that. This move has, of necessity, corresponded with a very confusing time to be living in his head, and there’s a period of adjustment ahead. I am appearing with enough regularity that I hope he’s deriving a sense of continuity from my presence. So far, since his move, I’ve been Emily. (One of the multiple Emilys, mind you, but a known quantity nonetheless.) I am instigating showers, as I think he may react with less willing enthusiasm when this activity is proposed by a younger aide. We took a lovely walk today. Tomorrow perhaps we can resume lunches out a couple days a week, as long as his state of mind allows it.

But now, two things are different. One, is that he is in a place where he cannot take off and get lost or do himself harm. Two, is that I can begin to add features that aren’t about caregiving back into my life. I don’t know what yet. I’m going to go to a yoga class this afternoon. But not before I stop by and provide, with my presence, some more familiarity in Jeff’s world. It’s my most important pose.