Saturday, January 30, 2016

ALZHEIMER'S: Better Homes & Guardians

Joe at 65 before Al showed up

I used to be an adventurous cook, before Al showed up with his bland palate and convinced Joe to dislike almost everything.  I’m not saying I was ‘Wolfgang Puck’ or ‘Julia Child’ adventurous, but I enjoyed experimenting with new recipes and trying different cooking techniques.

Occasionally, I’d get in over my head with something that was beyond my culinary experience.  I’d see a recipe in Bon Appetit that looked pretty straightforward only to find myself midway into the process discovering it was not, in fact, straightforward at all; there’d be some exotic ingredient I’d never heard of (and had no idea where to buy), or some required kitchen gadget I’d never even seen before. 

Well, that’s a bit like where I am now, trying to provide for the needs of a spouse struggling with Alzheimer’s, with no straightforward recipe that if I just follow, can make things turn out right.

Two years ago, when we first got the diagnosis and Joe was in the early stage of the disease, I remember na├»vely saying something about my ability to handle anything.  I had experience. I knew how to plan, execute and control things.  Right?


I’m not sure anything could have prepared me for the complex and frustrating world of an Alzheimer’s caregiver.  Everything I thought I knew—about motivating, inspiring, or stimulating certain behaviors—should be boxed up and mailed back to Norman Vincent Peale because I’m here to tell you that the rules in Alzheimersville are different.

That doesn’t mean I’m ready to give up, throw in the towel.  I still love Joe and am just as dedicated to him as I was before we started down this road.  I’m simply saying this is hard; hard to see the changes and accept the losses, hard to see the distortions in his reality and to see him slowly disconnecting.  And it’s impossibly hard to accept that no matter what I do or how much I try, I won’t be able to stop it.  I don’t have the recipe for a good ending…there is no recipe.

I have the advantage of being basically a positive person, which makes me hopeful and able to see the brighter side of most things.  But, there are times when negative thoughts invade my psyche and I see Al hovering overhead like a dark cloud ready to drench me.
That’s typically when something inside tells me, “Keep your balance. Stay focused.  A little negativity isn’t a bad thing.”

That’s right.  If I’m traveling on an icy road trying to decide if I should stop and put on chains, it’s a good thing to consider the possibility of sliding off the road.  I suspect you would find plenty of carnage behind anyone with Pollyanna Syndrome, because the fact is, “All things will not have positive outcomes, no matter what.”

With that said, I have something to confess.  After the holidays, I began to notice things in my behavior that I didn’t like, things uncharacteristic of what I’d call my “normal”.  I’d stopped putting on makeup in the morning, and doing my hair had become less important.  Getting out of the house seemed like a chore and I avoided returning calls.  There were days when I just didn’t care that Joe refused to get out of his pajamas, or that the laundry was piling up and there were crumbs under the kitchen table.  I found myself snapping at Joe for little things like not putting his dish in the dishwasher or leaving the light on in his closet. 

A light on in his closet, really?  With all the other issues we have around here, I’m chastising Joe about leaving a light on?  What’s wrong with me?

And then it hit me. I was depressed.

The one who rarely takes anything seriously and prides herself on being well balanced was depressed.  I’m embarrassed to admit it because I didn’t think people like me got depressed.  I’m the one who whistles a happy tune and gets going when the going get tough.   But all of a sudden (well maybe not so suddenly) it was like gravity was pushing down on me and I couldn’t lift it off. 
I know what you’re thinking, “Alas, pity dost not become thee.”  You’re right, I didn’t need pity, and I didn’t need a shrink to confirm my symptoms.   What I needed was a way to overcome that depressed feeling.  So this week, I refinished our master bath cabinets.  It might not be what anyone else would do to overcome depression, but for me it works.  By focusing on a new project it allowed my mind to refresh.  And, any time I make something more beautiful it raises my spirits and gets the old creative juices flowing.  Once that happens, all the other stuff just seems more manageable.  I’ll call it my “Better Homes & Guardians” therapy.

“Mother, what does normal mean?”

“It’s just a setting on the dryer, dear.”