ALZHEIMER'S--THE DEAR "AL" LETTER

Joe and grandchildren 2004

By age five you probably had it down: 
Don’t talk too loud. 
Say please and thank you. 
Keep your hands to yourself.
Wait your turn. 
Don’t talk to strangers. 
Flush.
Tell the truth. 

These are some of the social rules that kept you out of trouble.  But, if you’re undergoing cognitive changes (living with Al), the simple social rules you’ve applied your whole life can suddenly start to unravel. 

Joe and I are shopping.  It is just before Christmas so the lines at the checkout are longer than usual.  We’re stuck behind several other customers so Joe (and Al) decides to move out of line to sit on a stack of toaster ovens. 

Joe’s right on an intersection of aisles, and is watching shoppers pass.  He sees a mother with two toddlers and a baby coming down the aisle.  (Joe just loves babies.)   As the little family walks past Joe, he stands up and reaches out for the baby.   The mother stops in her tracks, looks startled, then pulls her baby slightly out of Joe’s reach.

Joe hasn’t noticed any of this, and begins to speak to the baby, “Hi there little guy.”  The mother continues to look at Joe.  It takes her a moment to finally decide that Joe isn’t menacing or threatening.  She pauses as long as she can without seeming rude, and then hurries off with her chicks.

I finish up my purchase and join Joe.  “You can’t touch other people’s children,” I tell him, “they don’t know you.” 

Joe looks puzzled. “I was just saying hello. Did you see how cute that little one was?”

At this moment, Joe has no idea that the mother didn’t want him touching her baby.   I try to explain why, but the notion that she might feel threatened just doesn’t make sense to him.

Awhile back, we’re at a restaurant when Joe and Al march to the front of the line and demand to be seated.  Joe has waited long enough.  It doesn’t matter that we’re still four couples down on the waiting list, he’s hungry.

A similar event takes place at his doctor’s office.  We’re waiting in an examination room when the doctor arrives a few minutes beyond our appointment time, the first thing Joe says is, “YOU’RE LATE!”  

I know there’s some term for what’s going on in Joe’s mind.  I’ve read the descriptions of what happens to your “executive function” (kind of the “CEO” of the brain) when you’re dealing with Al, Mr. Faux pas.   But it’s tough to see Joe struggle with awkward situations that in the past he would never have created in the first place.

Joe was plugged-in to social protocols.  He made a living talking to people, selling the tangible and intangible.  He could size up a social situation just by looking around the room. He analyzed the bejesus out of everything. 

It’s frustrating not knowing exactly how to help Joe.  It’s easy to manage the physical things for him like cooking, doling out medications, and driving place to place.  But it’s much harder to deal the social issues.  How do you tell your husband that he’s just offended someone with an ill-advised comment or action, and not seem overbearing?  There’s a fine line between being tactfully helpful and being bossy.  (Joe would say I frequently pole vault over that line.)

Well, I’ll keep working on it.  Somewhere there‘s a balance to be struck.

I’ve been told that writing letters can sometimes be cathartic (to help sort out your feelings and emotions).  I think I’ll try it.

This is my angry “break up” letter to Al.  (The director in me says to read this in a sarcastic Christopher Walken dialect.)

Dear Al,
I assume you were satisfied with your time with us in the Northwest, and that you’ve been enjoying the sunny weather here in Arizona.  However, there are a few things I wish to get off my chest.

First, just who do you think you are, sneaking into our lives and messing up all of our years of planning and preparation for our future?  Do you not understand how you are affecting the lives of our children and grandchildren?

Second, I suppose by now you’ve noticed the pain, frustration and disruption you’ve caused Joe, not to mention the scissors you’ve taken to his short term memory.  

Lastly, you are cruel and heartless, and lack all conscience.  It is without regret that I inform you that we are dumping you.

There is an army coming for you (our posse is armed and dangerous), and we’re going to fight you with our time and our money.

Sooner or later, Al, you will be kaput, a goner, finished, and we will all square dance at your demise.

Sincerely,
Jane Gayer

There, I do feel better.

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