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

Tuesday, May 15, 2012

Take Care of Yourself


It’s 8:45 in the morning and I’m at the living room window watching my husband enter the passenger side of a car that is not mine.

The driver is an attractive young woman. In some other scenario, I’d be the jealous wife, tearful at Tommy’s choice of a new companion. But since this is my life, and the driver is my aide, my feelings are of relief, not wrath.

Hiring someone to spell me from full-time chauffeuring was sparked some months ago by directives from friends and relatives. “Be sure to take care of yourself,” they had said when they learned of my full-time responsibilities. Primary progressive aphasia, a brain degeneration that has shattered my husband's speech, has also changed me into his interpreter, advocate, and guardian.

To be honest, when I first heard that “take care of yourself” advice, I thought, easy for you to say.  That sounds petulant, I know, but I wondered how I could do that with my home and work responsibilities, our budget, and my stubborn spouse.

Then, I had a second thought: I deserve it. So, I decided if I could be untethered from driving, let’s say, by arranging a substitute for the three days I ferry my husband back and forth to the YMCA, I could count that as fulfilling my loved ones’ order.

I went online and booked a taxi that would pick up Tommy at 8:45 in the morning on Mondays, Wednesdays, and Fridays, and drop him at the Y at 9. Then return at 11:45 to get him from the coffee shop around the corner of the Y. I arranged a month of these round trips.

“Honey,” I said on that day before my first day of Taking Care of Myself, “I’m going to a spa early tomorrow.  A taxi will be outside at 8:45 to drive you to the Y. Be sure to be downstairs.”

“Okay,” he said. He looked glum.

The next day I left the house early. Tommy was still asleep awaiting his own alarm. Off to the spa I went. First a massage, than to my locker to change for more pampering. As soon as I twirled the combination lock, I heard my iPhone ringing. This was not a welcome sound.

“Come home!” Tommy struggled to get out. (He still had words back then.) I looked at my watch, it was 9:15.

“Honey, what are you doing home?” I said. “Didn’t the cab arrive to get you?”

“Come home!” he repeated. “The cab left!”  This is what I figured: the cab arrived at 8:45 as ordered; Tommy was slow getting downstairs. The driver may have phoned the house, but Tommy didn’t pick up. The driver left.

“I’ll be there as fast as I can,” I said. As I raced past the receptionist, I tossed, “cancel my next appointment.”

“No cabs!” Tommy said as soon as I walked in the door.

“No, no more cabs,” I said. I went online and deleted the remainder of the taxi drives.

I returned to full-time chauffeuring until recently when I decided to try again. But, not with a cabbie.  And this time, I was less ambitious and sought only one day off, not three.

The job description I dictated to everyone I knew went something like this: Wanted, male or female to spell me one day per week. Own auto essential. Medical background a plus. Patience a must.

Enter the attractive young woman who met all my requirements. When I first introduced this new chauffeur to my husband, he gave her two thumbs up.

Today, with Tommy's comely driver at the wheel, I've elected to use my three hours to stay home. I will not shower, nor put on make-up. I will dress in sweats, sans underwear. I will not leave the house or get into a car. I will not drive back and forth, back and forth. I will not watch over anyone but me, and the dog.

That's Step One in Taking Care of Myself. For Step Two, I will go back online and schedule a taxi cab to pick me up on a day my husband will be tucked in for a long morning nap.

I will be downstairs on time and give the cabbie -- who is a driver that is not me -- the address of the spa I had abandoned all those months ago. I will head to the receptionist's desk and once again book a massage, a manicure, and a pedicure. And as I luxuriate, I will pray that my iPhone keeps her mouth shut.






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