Sunday, August 2, 2015

ALZHEIMER'S: THE EDGE OF REASON

Joe at the edge of the Canyon June 2015
 

The word edge typically means the place or line where something stops, but if I say I'm on the edge of my seat you know that I'm ready for something, I'm anticipating something.  I'm also edging if I move carefully, gradually, and inch my way.  If I have an edge I might have an advantage that makes me successful, or I could just be upset or angry.

It's very hard to reply on words when they can mean so many different things, yet we're stuck with them.  Language, whether written or spoken, is our single most important form of human communication.  Or it is?

If you take away words or the ability to understand words, can you still communicate?

Several years ago Joe and I spent a month on the island of Curacao in the Caribbean.  We rented a villa that came complete with a Polish cook, housekeeper, and butler (quite a treat for us).  Only the butler spoke English.  A couple days into our stay, the cook tumbled down a flight of stairs and broke her leg.  I was the only one there when it happened, and of course I speak no Polish, Dutch, Papiamento, or any other language other than English (I'm not proud of that).

In spite of having no words with which to communicate, I managed to get us to the hospital, complete a complicated insurance process, and describe the incident to the doctor.  Consequently, the cook got treatment.  Back home in Oregon, as I was telling this story to my daughter she said, "So Mom, when did you learn to speak Polish?"  Of course I didn't.

That was the first time I really understood that words sometimes aren't necessary.  If you don't have words, you just do what it takes to communicate.

I was reminded of this after Al moved in and words began to fail Joe.

At first Joe struggled to find the right word.  Then the right words started to go so he began substituting words that had similar meanings; "patient" might became "client" or a "steering wheel" would come out "driving circle".  If I listen intently and patiently (which I sometimes don't) we still do fairly well with these creative modifications.

Occasionally no words come to Joe, so in that event he goes with whistles or clicks combined with hand gestures, and generally still manages to converse.  You might not know this, but a twirling index finger and a left side nod of the head with raised eyebrows means, "Where's the restroom?"

A while back I read that when caring for someone struggling with Alzheimer's, touch is a very effective way to communicate.  It's true.  I start the morning with a big hug for Joe and before we've spoken a word I can sense his mood.  If I get a "leave me along" response, I know he's had a rough night with Al and I'd better give him a little extra space (maybe another zip code).

A couple of months ago I started trimming Joe's hair and beard, for no other reason than I like doing those kind of things for him.  (Well, that's true, but it's also because going to the barber shop is no longer a pleasant undertaking.)

This week while doing the trimming and shaving I noticed something interesting.  Joe really enjoyed his "spa" experience.  He relaxed and just let me pamper him.  In fact, he relaxed so much that I had to keep reminding him to sit up straight fearing that he might just fall off the bar stool.  In a non-verbal way, I was able to communicate to him that he is okay, that he will be loved and cared for no matter what happens next.  I can say those words to him, but he might not understand at such a deep level with all the other Al chatter going on.

There may be a good definition of the term "the edge and reason" but to me it means reaching the point where logic and reality become thin, cracked, and brittle, and you know that you'd better watch your step in a fragile or unstable environment.  If you're nearing the edge of reason you move carefully, inching your way along.  Since Al seems to have two left feet we know that if we aren't careful he might step into something and pull us over the edge with him.

Words are flimsy and inadequate to describe how happy I am that Joe is here on this side of the edge of reason, looking ahead at it still in the distance.

This week we celebrated Joe's 77th birthday but, just like two kids on summer vacation, today we're off to the pool with noodles in tow.  We're quite a picture.