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| Joe and Al at the gym June 2015 |
My Inner
Self: What are you afraid of?
Me: I’m not sure I understand the question?
My Inner
Self: Yes, you do. You know exactly what
I’m getting at.
Me: I’m not afraid of anything.
My Inner
Self: I can feel when you’re afraid. You
start getting tense and your breathing changes.
You did it just this morning at the gym, remember?
Me: I was
working out. My breathing always changes
when I’m working out.
My Inner
Self: Yeah? I think it was more than that. I think you were worried about Joe and Al.
Me: Why would I be worried about them? We go to the gym all the time.
My Inner
Self: You’re worried about how much
longer Joe will be able to manage the gym with Al. You noticed how much trouble he had this
morning getting the recumbent bike going.
You watched him wipe it down over and over to the point that people
around him noticed. You thought he
seemed more confused than usual.
Me: Oh, that was very helpful. Thanks for pointing it out, as if I need to be
reminded.
My Inner
Self: Hey, I know it’s tough. Watching a loved one go through this isn’t
easy. Remember who you’re talking to.
Me: Great, now I’m talking to myself.
I suppose
all caregivers go through internal struggles like this. We try our best to stay positive and find a
brighter side, but when you see the lights dimming for your partner, sometimes you
have to look really hard and squint a little to see that brighter side.
Joe tries to
hold on to things but the “Magic Eraser” is hard at work, relentlessly changing
our lives one little loss at a time. Sometimes
things are gone without me even realizing.
The other day Joe tried to fold a towel and it was as if he had never
done it before. Now, folding laundry is
something Joe has helped with for 35 years.
I know that sounds trivial, but it’s an example of how subtle the
changes can be; one day you can do this simple little thing, the next day you
can’t.
Yesterday I
pulled up iTunes on the computer, plugged in my earbuds and sat by myself to
watch the film “Still Alice”. I had
wanted to see it but had been stalling, unsure if I would feel better or worse
after watching it.
It turns out
I very much liked the film. I
appreciated the authenticity of the portrayal of a person struggling with Alzheimer’s
and its impact on the family. It
reminded me that what we’re experiencing isn’t unique, that we’re not
one-of-a-kind. I’m not sure why I find
that comforting but I do. Anything that helps
me keep perspective has to be good, right?
I certainly
understand why Julianne Moore won an Oscar for her performance. I was particularly struck by a scene where
Alice gives a stirring speech at an Alzheimer’s Association symposium. By now in the film she is displaying significant
memory impairment. With great care, she
quotes from the poem by Elizabeth Bishop, ‘The Art of Losing’:
“The art of
losing isn’t hard to master; so many things seem filled with the intent to be
lost that their loss is no disaster.”
The art of
losing…I really had to think about that.
From birth to
the end of life we’re gaining or losing something. I once had a doll that meant the world to me,
but I grew up and now I have no idea what happened to it. There was a point where I could do a one-handed
cartwheel and “to the floor” back bend. Gone! Really gone! Joe
and I spent almost two years remodeling a beautiful house high on a cliff, then
sold it and moved to another city. It
brought me to tears then, but now I rarely think about it.
In the large
scope of things, who cares if Joe doesn’t remember what he ate for lunch, the
word vitamin, or how to spell spaghetti (that one always gets me, too)? It’s unimportant whether or not he ever finds
his fancy blue socks or the sunglasses he lost last week. It’s all right if he reads a book but the
next day can’t tell me what it was about. If he can no longer operate a cell
phone or a remote control or drive a car, our world won’t end. I‘m not going to worry too much about any of those
things. There will be many losses, there
always have been.
These days when people
ask me how Joe is, I have a standard reply, “Oh, he’s okay, about the same,
just more memory stuff.” What I really
should say is, “He’s lost a little more here and a little more there, but he’s okay. He still has a lot left.”
By the way, I
think I’ve become addicted to the computer game, “Words with Friends” (the
cousin to Scrabble). Ever since my
daughter told me she spelled a 111 point word I can’t stop. I’ve been staying up late madly spelling
these obscure and ridiculous words, sometimes with people I’ve never met. I may have to find a support group for my new
affliction.
