ALZHEIMER'S: WHAT YOU ARE IS

There are days… days when I don’t know what to do… times when I’m discouraged and can’t grip hard enough to stay positive.  Should I just let go and let whatever happens happen?  Does what I do even matter?

These are the questions that run through my overcrowded caregiver head.  Yes, I know being negative won’t solve our problem with Al. It might even empower the son-of-a-b@$%!.  No one said this would be easy; in fact, they all keep telling me it’s going to get harder. 

But there’s a phase that keeps coming up, bubbling to the surface of my boiling pot:

“What you are is what you think you are.”

Over the years I had heard that phrase many times, but somehow it hadn’t sparked much thought.  That probably had something to do with my frame of mind at the time.  I never had to worry much about being positive.  That’s just the way I was, happy and cheerful, thinking I could do anything.  I laughed a lot, too much, sometimes when I shouldn’t have, like during the last week of my mother’s life.

As my dear mother lay struggling to breathe and clear her throat, I’d coach her to cough and spit into a cloth I held at her face.  I’d say, “Mom, just spit, please, please.  It’s okay just spit.” She’d look at me in confusion and stick out her tongue and I’d say again, “No Mom, just spit,” and I’d fake a spit to show her.  This went on several times until finally, looking very serious, she lifted her head, puckered her lips, drew back and spit… right into my face.

I gasped, completely shocked, and looked at her with my mouth wide open.  She also looked shocked as I began to laugh.  Then she began to laugh.  We laughed hard. That was the last time she ever laughed.

So here I am today, having to think about being positive, needing to be positive and cheerful.  It’s just part of my new reality.  Like what happened this week at Joe’s appointment with the new doctor, a geriatric psychiatrist at the research center.  I ached for Joe as he struggled through the tests, knowing that he had declined; that his cognitive abilities had changed, slipped a little farther, and I knew Joe was painfully aware of it. 

As we left the office, he said, “I didn’t do very good, did I?” 

The last thing he needed was for me to be dejected or despondent.  So I wasn’t.  I put on a smiling face and reminded him I loved him and said it was okay, that he really hadn’t done that badly and that others probably couldn’t tell a hippopotamus from a rhinoceros either.  And we laughed.

All the while I’m thinking I’ve been expecting too much of Joe, that I’ve been impatient and annoyed when I shouldn’t have been.  I still have an image of him in my mind as the thinker, the strong capable guy; I don’t like being slapped back into reality and having to face the truth.  The doctor called it “moderate stage” this visit, not “mild cognitive impairment” like we’d started with.  I can no longer refer to Joe’s struggle as early stage anything.  I’m feeling inept as a caregiver wondering if there was something I could have done to slow the decline.  I disappoint myself over and over.

Wait, there’s that phrase again,

“What you are is what you think you are.”

Some forty years ago, Dr. Maxwell Maltz wrote a book called Psycho-Cybernetics. It explained how self-image is such a large part of how we view our limits and capabilities, and that we have the power to change our thoughts and therefore change our lives.  It isn’t just being positive and having a strong self-image that makes the difference, it necessitates actions that support those positive feelings.

I’m going to give it a try.  I’m going to start telling myself that I’m a gifted caregiver and that what I do enriches and improves Joe’s quality of life.  I will remove barriers that keep me from being my best.  I will correct my internal voice when it exaggerates the negative or throws insults at me.  I understand that perfection is a high goal to aim for. I don’t need to start there, or even end there. I know that everything is not my fault or my responsibility.  I will accept help from those who love us.

What I Am Is Not What I Have To Be

I’ll start with small steps.  For years I’ve said to myself that I’m not a morning person.  It’s well after 8 o’clock by the time I stumble out of bed and shuffle into the kitchen for that first cup of coffee.  (Joe typically wakes long before me.  That’s partly because he wakes me during the night, and I don’t easily go back to sleep.) 

Now, if you’re not a morning person in Arizona in the summer time, you will completely miss any chance of going outside without melting in what feels like the surface of the sun.  So, right about now, I must become a morning person. 

Tomorrow morning, I will get up no later than 6 am and have coffee on the patio, just Joe, Al and me and the birds singing in the trees (and the guys that pick up the trash on Mondays).  It will take a while before I will easily roll out of bed and truly become a “MORNING PERSON”, but I will act like one....YAWN