*Primary Progressive Aphasia, a degeneration of the part of the brain that affects speech.

Tuesday, July 31, 2012

The Turn Around Tango



It’s 5:00 p.m. and the dance my husband and I perform daily -- which I have dubbed “The Turn Around Tango” -- is about to begin. Music would be nice, but our duet is staged in silence.

I’m in the kitchen preparing dinner. A pot of spaghetti is nearing its boil on the stove. I remove a colander from its place in a cabinet and set it in the sink. When the timer rings, signaling al dente, I lift the pot by its two handles and turn around to dump pasta and water into said colander. Alas, the pockmarked utensil has vanished.

In his fancy step, while my back was turned, Tommy has removed the colander from the sink, placed it back in the cabinet, and exited. He has not done this to vex me; this I know. He just can’t help it.

I remain standing -- a tricky move because I am holding the caldron with padded gloves, steam is clouding my eyeglasses, and I have nowhere to toss its contents. I hold this pose for a beat, then swivel and return the steaming pot of spaghetti to the stove.

Early on, when I first encountered my husband’s stealth move, I would try this: “Honey,” I’d say, “Please come back into the kitchen and get the colander out of the cabinet where you put it. I need to drain the spaghetti.”

Tommy would return, a contrite grin on his face, and perform his well-practiced steps. But, I no longer make that request. I have memorized my moves: button lip, pot back to stove, retrieve colander, return to sink, lift pot, dump.

Our Turn Around Tango takes place in other areas of our house and at various hours. A pantry door opened to extract garlic and Italian spices, is closed before I get out the first dash. Same for refrigerator when soy milk is used for my Cheerios. Ditto the garbage can lid I keep open while doing kitchen prep.

The reporter notebooks I use for Trader Joe’s and Target shopping lists are invariably returned to a neat stack after I have separated and laid them side-by-side for easy entries. All it takes to cue my spouse is for me to turn my back.

“Don’t you get mad?” I was asked by a friend. “Don’t you want to scream at him? Tell him to leave your stuff alone?”

I answer, “I think it helps Tommy when I remain calm.” I believe this to be true. My husband shows no rage in dealing with his illness.

To this friend, who has had her own frustration with a stubborn, aging relative, I say, “I’m a patient person. This comes naturally to me.”

But, I fear I lie. I can recall many instances when I am anything buy patient. See me drumming the table of a restaurant until the waitstaff comes for our order. That’s me at the hot dog stand, stewing, while the proprietor chats it up with the customer in the front of the line. And yes, that’s me fuming in any and all medical offices while waiting for my name to be called.

So, how am I able to remain saintly with my husband? What good would it do to seethe or explode? His condition prevents him from veering from his compulsive, neat-making routine. The pattern of his dance steps is imprinted on his brain; he cannot do otherwise.

As for me -- petite and compact -- I’m quick on my feet. Over the years, I’ve been able to practice my moves. Sometimes, I stumble if the steps are too difficult. Often, I wish I could get one maneuver down perfectly before another is introduced into our lives.

Thus far, I’ve kept up with my creative dance partner. The trick is to let him lead.

3 comments:

  1. Thank you for this blog. My mom was diagnosed with PPA a year ago. She still says yes and no or I don't know. She gets upset very easily and it makes me so sad to see because I know she can't help it and its not even really "her". Is or has your husband ever been combative or does he have behavioral issues? How do you deal with it?

    Again, thank you for sharing your story throug this blog.

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    Replies
    1. Thank you for reading and commenting. At this time, my husband has not been combative. His primary challenge is his aphasia. I hope you will read the blog archives as I have earlier written about the behavior aspects of FTD/PPA. My thoughts are with you.
      Elaine

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