Tommy is on bended knee before me holding a Capezio ballet slipper in one hand. We are both laughing. The scene reminds me of Prince Charming when he finds his Cinderella and the perfect foot to fit the glass slipper.Read More
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.
I’m in the audience of a medical conference on Frontotemporal degeneration (FTD) and Primary Progressive Aphasia (PPA), little-known illnesses to most, sadly familiar to me. The auditorium is filled with caregivers, and members of the healthcare field.
Every since my husband was diagnosed in 2009, I’ve become well-versed on the PPA version of the condition. But I figure there’s always more to learn, so here I sit hoping to catch news of some miracle cure.
I listen to speaker after speaker. Yes, awareness is building. Yes, research continues. But, no, no hope yet for reversal of Tommy’s loss of speech. I slump in my seat, discouraged.
A speaker steps on stage to introduce the topic of bvFTD. My attention sharpens; this version is new to me. I learn that the “bv” that precedes FTD stands for “behavior variant.” Those burdened with those added initials, “can experience excessive spending with a lack of awareness of its implications,” she says.
Then, hands are raised in the audience, microphones are passed, and the horror stories begin -- of loved ones’ shoplifting, impulsive buying, and falling prey to Internet swindlers.
“I came home and there was a boat in my driveway,” says one caregiver who has risen to her feet.
The microphone goes to a man who volunteers, “She bought a new car, never discussed it with me.”
I overhear a woman seated in my row who says to someone on her right, “My husband sent money to Nigerian scammers, and when I stopped it, they started harassing me.”
And there was more: sweepstakes, mail orders, contests, door-to-door salespeople, lotteries; all spilled out as examples of bvFTD misery.
“My God,” I say too loudly. To myself, I think, even if my husband could still talk, or use computers, he’d never get bvFTD because he’s a tightwad.
As I lean back in the cushioned seat, I recall a scene that supports my logic.
“I like it,” Tommy had said as he stared at the new Timex I fastened on his wrist.
“You do?” I said. I stood back, hands on hips, and studied him as he twisted it upright so its white face was easily visible.
I was pleased at my husband’s reaction because this watch, which I had purchased at Nordstrom’s for $65, replaced the Pulsar he had worn for 40 years.
Throughout our marriage, I tried to get Tommy to give up that elderly timepiece. But, he always insisted on new batteries or fresh bands to keep it alive.
“Nope, this is dead,” was the last repairer’s diagnosis.
“Please let me buy you another,” I had said to Tommy. “I promise not to spend a lot.”
The Pulsar wasn’t the only long-held possession I’ve attempted to pry from my husband’s hands, and replace with a newer version. I’m still unsuccessful with his balding brown leather wallet.
“Look, Honey,” I say whenever we pass a display of billfolds. “This looks just like your old one. It’s not expensive. How about it?”
He’ll shake his head “no,” put a hand on his pants’ leg to verify I haven’t pick-pocketed it, and pull my elbow to move me along.
Naturally, our differing views on spending money showed up early in our marriage. Although Tommy and I both grew up in households with little cash, my father was careless with money. I caught that gene and in my marriage to my first husband, a doctor, my lineage had a field day.
As for Tommy, paychecks were parceled out for necessities. He skipped college, and went into the Air Force to help support his widowed mother. After the military, he worked to pay rent, utilities, his YMCA membership, and to build up a small savings account. No car, no credit cards, no up-to-the-minute fashions, no travels.
When we wed, I tried to spoil him with a joint checking account, credit card, and a few doodads that I was happy to bestow on my penny-pinching husband. And while Tommy enjoyed these gifts, he never became infected with my loose-spending ways.
Now, as I sit in the auditorium, riveted by tales of depleted savings, unwanted merchandise, and giant credit card bills, I feel sympathy for those who cope with the wreckage left in bvFTD’s wake.
For myself, I admit to new gratitude. True, no miracle cure awaits my husband, But his frugality, thus far, has kept us both from drowning.
Our booth at Dappers is all set with napkins and silverware, catsup and hot sauce, and miniature capsules of flavored creams that my husband Tommy likes for his morning coffee. Linda, our favorite waitress, has taken care of this.
As we approach the setting, Tommy gives my shoulder a squeeze. It is a love tap, I know. We remove our jackets and caps and toss them in a corner of our benches. I extract Tommy’s reading glasses from my tote bag while he parcels out the Sunday paper. Once settled, Linda approaches with her order pad and pencil.
Every Sunday morning, since we first met in 1996, Tommy and I have eaten breakfasts out. We are creatures of habit. We like predictability. We are not the sort who seek out the latest place. Routine makes us comfortable, like a pair of favored slippers.
The Lakeview Restaurant on Ashland Ave. in Chicago, was the first diner we went to as a couple. Tommy, who had lived in the neighborhood for at least 20 years, was a regular. Before I entered the picture, he would sit alone at the counter reading a paperback until one of his cronies would take the stool next to him.
When Tommy first brought me to the Lakeview, he held my hand as he introduced me to his waitress. “This is Elaine,” he said, loud enough for the other customers to hear. He tightened his grip on my hand, as if he feared I would get away.
Two years later, he held both our hands aloft to show our wedding rings. “My wife,” he said. The other diners turned their heads to learn the source of the jubilant voice.
I can’t remember the name of our Lakeview waitress, but Tommy likely could. Although he was diagnosed with Primary Progressive Aphasia in 2009, a dementia that robs the victim of speech, the disease left his memory intact.
Soon after we married, something stirred me to shake predictability and prove I could surprise. After living in the city all my life, I convinced Tommy we should move to a small town. Although my husband was content where we lived in Chicago, he wanted to keep his dopey-dreaming wife happy. So, he helped pack.
We found the Geneva Diner in the small town 40 miles west of Chicago. Every Sunday morning, we’d settle into our regular booth, and chat up the college student who was our waitress. But the regularity of Sunday breakfast in this bucolic spot -- where there were only a handful of Jews (like me) and even fewer Democrats (like both of us) -- couldn’t make up for my feeling I had made a giant mistake.Exactly one year later, I dragged Tommy back to Chicago.
Once again, my husband, who had planted a vegetable garden and said he could have remained in Geneva, went along with the move. Perhaps he believed that the vow we took in 1998, “Till death do us part,” meant following his wife’s foolish whims.
We settled in the Independence Park neighborhood on the city’s northwest side. I felt free of the itch for change of scenery. I was finished with surprises. All I wanted was the familiar, the lovely predictability of everyday life.
“Do you want to see a menu, or do you know what you want?” Linda at Dapper asks. She knows we don’t want to see a menu, but never fails to give us the option. She looks to Tommy, pencil poised. She has been a witness to my husband’s steady loss of language over the past three years, but has never given a clue there is a problem.
She waits as Tommy voices something that resembles the first syllable of a breakfast dish. Dear Linda catches his choice. She doesn’t turn to me -- as some people do to decipher what Tommy is trying to say, and I’ll tell you, I don’t like it when they do that -- she just says “got it.”
When Linda leaves the table, Tommy passes to me my favorite newspaper sections. He taps my hand. I take this to mean he is happy to be engaged in this predictable, ordinary Sunday ritual. Then, we begin flipping pages and reading. With our lack of conversation, we appear to be an old married couple who disdains chat in favor of the print before us.