Sunday, April 19, 2015


We are all fallible, impulsive creatures, uniquely adept at messing things up.  Yet we also hold superpowers strong enough to create what was once unthinkable, unimaginable.  We can go “where no one has gone before”. 

It’s ironic.  The human brain, through it’s billons of cells, can interpret sensations from your body, combine them with sights, sounds and smells from the outside world and arrange them all into a single incredible life; yet all told it weighs only about three pounds and has the texture of firm jelly. 

But what’s even more incredible is that something as mysterious as Alzheimer’s disease can effectively erase one’s living awareness of the world. 

The erasing sometimes takes years to detect.  But, once it starts it’s unstoppable, at least in today’s world.

I picture Joe standing at a long chalkboard writing out life’s memories as they occur, while Al is some distance behind wielding a big eraser and busily rubbing things out, a little here and a little there.  Occasionally, Al jumps ahead and erases something Joe has just written.  It goes on and on.

I suppose most spouses dealing with Alzheimer’s have that moment, the “magic eraser” moment.  It’s the day our loved one is diagnosed and we know that “Al” will be part of our lives for the rest of our time together. 

So as caregivers, what do we do?

We do what all humans are capable of doing; we show emotion, maybe cry and get mad; then we adapt and we evolve. We make mistakes and we learn.  (Then we go back to step one and repeat.)

The first thing I learned was how much I didn’t know about Alzheimer’s.  It was frustrating because Al made himself (as the uninvited guest) very much at home with us.

There really is something to the old adage, “information is power”.  The more I understand about Al, the more I feel I have some say in what he does to us; that perhaps with good information and a good plan I can maintain some amount of control.

Now “control” is a relative term. It’s defined as “the power to influence or direct a people’s behaviors or the course of events.  To exercise restraint or direction over; to hold in check; to curb.”

Okay, so maybe “control” is a little overreaching.  But the ability to have some influence is not.  The everyday decisions I make as Joe’s caregiver directly influence his physical health as well as his emotional and psychological well-being.  It’s a caregiver’s power as well as their burden.  But it certainly doesn’t mean that I can thwart the magic eraser.

Couples influence each other all the time, it’s not extraordinary. But generally if a couple makes it and stays together, it’s a two way street, the old give and take. 

With Al around, that balance is disrupted.  And that’s what creates the struggle for a spouse who is also the caregiver.  I sometimes have to remind myself that Joe isn’t the problem, Al is the problem.  It is the disease that is the disruption.

For me, battle lines are drawn.  I think I understand what Joe and I are up against.   So every day we put on our armor and ready the defense.

Right now our best defense is a healthy diet, regular exercise, proper sleep, good medical care, and the support of family and friends. 

It would be helpful to have a Jedi Lightsaber.  (I’m thinking that might just trump the magic eraser.  I believe I saw one for sale on Amazon.)

That reminds me, a few laughs are part of the defense. 

A couple of weeks ago Joe decided to grow a beard.  He has done this only one other time in his life.  So we weren’t sure what it would actually look like. 

I’m happy to report that it’s quite nice and almost entirely white.  But I’ve also noticed that it’s chameleon-like, and depending on the color of shirt he’s wearing the beard changes colors.

The other day while we were out shopping at the mall (Al isn’t wild about malls), Joe sat at the front of a store waiting for me to return.

A skylight eventually floored him with light which reflected onto his aqua colored shirt turning his beard a lovely minty green and drawing the attention of passing shoppers.  

I came out to meet him and just had to snap a picture.  I’m thinking a purple shirt will be nice for tomorrow.