Sunday, January 17, 2016


The Alternate Reality

I looked at the calendar today to realize it’s already the middle of January.  Wasn’t it just New Year’s Day a couple of days ago? I feel I’ve lost time somewhere.  I guess that’s what stress does, makes you lose track of time.

I’m having trouble getting past something that happened Wednesday of last week (at least I think it was Wednesday of last week). 

Joe and I were having a routine early afternoon, Joe napping as I putter in the kitchen.  I hear the sound of a chainsaw, which I think must be the gardeners trimming the beautiful palm that graces the common area in front of our home.
I decide to say hello to the gardener so I head out the front door, making it only a few steps before I see his workers have cut the tree in half.  With no prior notice—no warning at all—they have just destroyed the tree. 

I run into the house to get my phone and call the person responsible.  The noise I’m making wakes Joe from his nap, and he follows me back out to the yard just in time to see the workers wrestling the tree’s carcass to the ground.

By now there are several people surveying the “crime” scene, and quite a lot of noise.  I’m upset over the loss of the tree and for having been too late to stop it from happening but by the time the person responsible arrives, it has become a catastrophe in Joe’s cognitively altered mind.  In fact, I have never seen him quite so agitated and angry about anything.  It is the first time I have feared he might completely lose control of himself.

I guess looking back at what happened, I shouldn’t have been surprised by the level of Joe’s distress.  I know since Al parachuted in the parts of Joe’s brain that control emotion, reasoning, and problem solving have been disrupted but, until this incident, I hadn’t seen such an extreme manifestation of it. 

Considering all of the elements involved, what happened last week was a perfect storm, a recipe for trouble within the Alzheimer’s mind; the disorienting noise of the chain saw, loud conversations happening faster than comprehension allows, an abrupt awakening.  It would be hard to concoct a worse situation for Joe.  It was the mother-load for overstimulation, enough that it would take him several days to recover.  (Mostly he just slept.)

As a caregiver, I try hard to protect Joe from trouble spots in our environment, but I know that’s unrealistic. Stuff happens.  A while back I dropped a pan on the tile floor in the kitchen and was surprised at Joe’s extreme reaction.  I had to remind myself that when he processes a loud sound, there is a lag between hearing the sound, interpreting it as something harmless (not an explosion), and being able to relax again.

When people hear the word Alzheimer’s, most will immediately think of memory loss (forgetting words, names, or events).  That certainly is a big part of it but there are other losses that may be equally difficult for a person, and their caregiver, to cope with.
Imagine losing the ability to perceive time or the passage of time, looking at a clock and not being able to understand how time is moving. It sabotages your ability to plan, to be on time, or even to know if you’re late.  You might get up the middle of the night and, thinking it’s morning, start breakfast, or turn on the shower. Or worry about being late for an appointment that is actually scheduled for many hours later.  It doesn’t take much to understand the stress that would create for your spouse/caregiver.

I should be careful talking about losing perception of time.  Based on what’s been happening lately, maybe I’m the one that is losing her perception of the passage of time. 

Come to think of it, I’ve been at odds with time my whole life.  When I was a child time wouldn't move fast enough.  Years later, after I'd worked for 25 years, I used to say that I didn’t need more money, I just needed more time; time to do the things I wanted to do…time to be with my family…time to rest and enjoy what I worked so hard to get…time to think and plan…time to create.

Here I am now wishing I could roll time back; go back to the time before Al stuck his nose in our business, before all the craziness and worry, before we started down the rabbit hole with Alice (really Al) into the alternate reality that is Alzheimer’s.

“If I had a world of my own, everything would be nonsense.  Nothing would be what it is, because everything would be what it isn’t.  And contrary wise, what is, it wouldn’t be.  And what it wouldn’t be, it would. You see?”  
The Mad Hatter
Lewis Carroll, Alice’s Adventures in Wonderland &
Through the Looking Glass