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

Tuesday, May 29, 2012

Green Thumb

It’s 6:30 in the morning and I’m at the breakfast table reading the newspaper when my eyes veer from the print to catch the sunlight streaming in the window. Tommy, who is asleep upstairs, has raised the blinds to make room for seedlings he placed on the sill.

I leave my chair to read the tiny sticks stuck in the dirt. There are three Tomato Super Marzanos, two Habanero Hot Peppers, one Cayenne Long Slim Hot Pepper, one Super Chili Hot Pepper, two California Wonder Bell Peppers, and one Cucumber Pickling.

It was yesterday when my husband sped through the aisles of the garden center with me, and a green-uniformed salesman, following after. “Tomatoes,” I called out behind me. “This way,” the man said, and reversed our directions until we ended up in the proper row. And so it went with the rest of the plants now on the sill.

Tommy has had a green thumb as long as I’ve known him. When we first met in 1996, he was living on the second floor of a friend’s two-flat with a back yard and a garden. But because he worked a full-time job, he never had time to till that soil, plant, or reap.

When we married in January of 1998, outdoor gardening was out, so my new husband started with indoor plant maintenance.

“These need watering,” he said as he inspected my sorry potted plants. Moving along the  dieffenbachia, schefflera, palm, and lily, he dug fingers deep into the soil and shook his head. He went to the kitchen, filled a pitcher with water, and after dousing, asked for a rag to dust leaves. My plants perked up. I was grateful to have a custodian assume a role not in my DNA.

As soon as we moved into this house, with its big yard surrounded by fencing, Tommy surveyed his land and staked out plots for a vegetable garden. When Burpee catalogs arrived in the mail, I’d hand them over. He’d grab them as if they were letters from a long-lost relative.

Every day my husband would tend his garden. I’d watch as he inspected, watered, fertilized, and pampered. “Looking good!” I’d call out. He’d turn to my voice, wave a spade, and grin, “Not too long now,” he’d say.

I’m not sure who was sunnier in those scenes. Me, witnessing my husband revel in a simple hobby long awaited? Or Tommy, blooming into a proud landowner?

When his crop yielded vegetables to rival a farmstand’s, he’d place a half dozen ripe tomatoes and several hot peppers in a plastic bag. “These are for the boys,” he’d say, referring to his golfing buddies who savored his garden’s output.

He’d stop neighbors.  “I’ve got tomatoes, peppers, cucumbers, and potatoes,” he’d say, looking as proud as a 4-H winner. “Want some?”

But this year, our idyll was threatened. When the seed catalogs arrived in the mail, I handed them to Tommy. Instead of snatching them, he pointed to the coffee table. I dropped them there.

Later, when I saw him stuff them, unopened, in the straw basket on the side of the couch, I asked, “Too much work?”

“Yes” was the nod. I wondered: had the lapses in his brain that ended his speech, also turned his cherished pastime into something too complex. I didn’t press him further.

Then, something changed. It started with the cemetery. “Honey,” I said, “we have to get plants for my parents’ graves.” This was our annual Mother’s Day ritual. We’d buy a few cubes of Zinnia, pack a kit with a kneeling pad, spade, water bottle, and Wet-Naps, and head out for Waldheim.

At Home Depot, instead of stopping at the few posies for the graves, Tommy placed three hanging baskets and several flats of assorted flowers in his cart. “Front porch for the baskets?” I asked him. “Back deck railings?” He nodded, “yes.” My heart lifted.

The next day I saw him heading out the door. “Where are you going?” I asked. Then, I wrote, “Walk” “Bike” on a Post-it. I waited for him to circle an answer. He shook his head, “no” at each.

He took the pad and pencil and wrote “herb” under my two guesses. I knew what he meant. A landscape nursery was only a few blocks from our house.

“The garden center!” I said. “You’re going to the garden center? Vegetables?” He nodded, “yes.”

“I’ll go with you,” I said, grabbing my sunglasses.

Soon, the plants that line the sill will be embedded in backyard soil. My green-thumbed husband will water, tend, and reap vegetables for his buddies, our neighbors, and our table. We’re keeping our fingers crossed.  

Produce would be nice, too.

Tuesday, May 22, 2012

Do You Have A Visual?

On the day my daughter and I were combing the aisles of Ocean State Job Lots, we weren’t seeking the retailer’s “quality brand name merchandise at closeout prices,” but instead were searching for Tommy.

“I don’t have a visual,” I shouted to Faith.

“Me neither,” she said.

The tour of the 40,000-square-foot warehouse in Boston was Faith’s idea to keep my husband and I entertained during our visit to her hometown. She knows Tommy is frugal, and thought he’d enjoy browsing. It was there I was teaching her an exercise I call, “Find Tommy.”

I don’t think my husband deliberately tries to lose me. But now, during our trip, perhaps he had had enough of my hovering, my reminding, my suggesting, and decided to give me the slip.

Even if Tommy was just teasing me with his disappearing act, I worried because his condition has left him vulnerable if he should get lost. Hence my hunt.

At Job Lots, as Faith and I were mid-search, I shouted to her, “Check pet supplies.” 

“Nope,” she called back.

“Weed and feed fertilizer?” my daughter yelled. She knows Tommy loves gardening, so that section seemed a good bet.

We threaded the aisles as if in a maze. Down through household cleaners, up through bed linens, past golf shirts, until I spotted his Red Sox baseball cap.

“Hi Honey,” I said, as I latched onto his elbow. “Having fun?”

I gave no hint as to the game Faith and I had just competed in. My husband is a proud, physically-fit, 75-year-old, who bravely copes with his handicap.

I, on the other hand, am often muddled.

Consider this incident that occurred on the day we were to attend a children’s musical with my 10-year-old granddaughter in a major role.

“You must explore Jamaica Pond,” Faith had said on our first day as she dropped us off at our Bed & Breakfast lodgings. “Just turn left from your front door, cross the street at the light, and you’ll be on the trail. It’s a one-and-a-half-mile circle.”

Tommy, a committed exerciser, who regularly walks two miles around our neighborhood, brightened when he heard my daughter’s suggestion.

Jamaica Pond is indeed a beautiful area, with sailboats lolling on the water, parents pushing strollers, athletes jogging or running, and dog owners tugging leashes.  As soon as we dropped our suitcases in our room, my husband and I turned left from our front door and headed for the stoplight.

Before we reached the corner, Tommy started to cross. “Honey,” I said, as I dragged him back. “Look at these cars speeding by. You can’t cross here. We have to go to the light.”  We didn’t do the complete circle, just enough to give us a taste.

On the afternoon of my granddaughter’s show -- our primary reason for coming to town -- I was relaxing on the bed when I looked up to see Tommy lacing his gym shoes.

“Where are you going?” I asked. He pointed in the direction of the pond. “But, I don’t want to go,” I said. “I’m resting.”

He continued to point and indicated he was planning to leave without his hawk-eyed wife.

“You can’t go alone.” I said. I jumped from the bed. This time, I had a visual: in my mind’s eye, I saw him cross in the middle of the street. If he did make it to the other side, I pictured him lost. I envisioned a police search, a missed performance, and a daughter miffed at my messing up the evening.

But then I thought: I’m overreacting. Maybe he can handle it. I stuffed his pockets with the B&B’s address, my business card, and his cellphone.

Then, Tommy decided to shave. He used a Bic razor because he forget to bring along his electric. When he emerged from the bathroom, his chin was bleeding. He was heading for the door.

“Honey,” I said. “You’re bleeding. You can’t go out like that.”

I pulled him to the bed and applied Neosporin and a Band-aid. The words, “what were you thinking” suddenly slapped me. If Tommy didn’t notice, nor care, that he was bleeding, how could he travel safely on his own to the Pond?

“I’ll go with you,” I said. I put on my gym shoes, we turned left at the front door, crossed the road at the light, and did a 20-minute trek.

That evening, we had front row seats. My eyes didn’t leave my granddaughter for the entire musical. Well, maybe once or twice. He thought she was terrific, too.

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.

Tuesday, May 8, 2012

Grateful He’s A Tightwad

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.

Tuesday, May 1, 2012

Learning to Un-Drive

Tommy and I were stalled in traffic, classical music was playing on the car radio. It seemed a good time to finally ask the question.

“Honey,” I said, turning to my husband, silent in his passenger seat. 

“Do you miss driving?” 

That question had been a pest in my brain ever since I took away his car keys. I knew I had to force it out, place it before Tommy if the guilt ever were to leave. 

Needling in my conscience: How could I have deprived him of driving, of a skill he had worked so hard to accomplish? How could I have robbed him of his independence when so much had already been snatched way? 

Tommy turned towards me, shook his head “no.”  Then, he raised his hands and turned two thumbs down. 

“You don’t miss it?” I said. I wanted to be sure I understood his meaning. I wanted to cleared of my crime, off the hook. 

Another head shake, “no.” 

I thought it ironic I was the one who took him off the road, when I was the one who had put him there. 

It was 1999, the second year of our marriage. I was in the driver’s seat; Tommy a passenger because he didn’t own a car, had no license. 

“You’ve got to learn how to drive,” I had said. “I’m tired of doing all of the driving.” 

He was 64 at the time and took up the challenge as if he were a teen yearning for a shot at his dad’s wheels. 

After a series of lessons, Tommy got his license. I watched as he placed it in his wallet,  tender and proud as a dad tucking his newborn in for the night. 

For a time, we shared my car, but soon, like that teen he resembled, he wanted his own. To dealerships we went, inhaling new car scents as we circled autos, debated exterior colors, interior upholstery, and the wisdom of a sunroof. 

Finally, Tommy choose a champagne-colored sedan with power steering, power windows, a fob keychain that unlocked and relocked the doors, and cup holders. 

“I love it!” he had said, sitting upright in the driver’s seat of his new car, hands at two and ten o’clock as instructed. I was happy for him, and for me. I’d now have my car all to myself. 

At the beginning, when we’d go out together, we’d use his car. We were like many married couples; husband in the driver's seat, wife a passenger reading the map, tuning the radio, or day dreaming out the side window. But, after awhile, I couldn't abide Tommy's driving, 

"Red light, red light!" I'd shout and stamp my foot on my imaginary brake. 

"I see it, I see it!" he'd say, and we'd both bounce towards the windshield as the car came to an abrupt stop. 

Eventually, I took the coward's way out. When Tommy was at the wheel, I'd settle into the passenger seat, close my eyes and keep them shut until I heard the ignition switch turn off. 

As the years passed -- without me alongside harassing or zoning out -- he started to have a few scrapes. Then three red light tickets in a row. And finally, the brain degeneration he was diagnosed with in 2009 slowly began to rob him of speech. 

I worried, how could he explain himself to another driver if he were to have an accident? To a police officer? Neighbors who knew of his condition and had witnessed him leaving the scene of a fender bender, worried about their young children. I insisted he stop driving. 

Of course Tommy protested, who wouldn’t. He surrendered when I threatened to have his car battery removed. And, when I promised I’d drive him whenever and wherever he wanted to go, he fished his keys from his pocket, held them in his fist for a second, then dropped them in my palm. 

The following week we sold his car, the champagne-colored, full-featured, with sunroof, sedan he loved. 

True to my word, I now drive my husband whenever, wherever. In my car, with me in the driver’s seat and Tommy in the passenger’s, I chauffeur him back and forth to the YMCA three days a week, to the golf store for putting practice, drop offs at the bowling alley or golf course to meet his buddies, to Home Depot or the garden shop for his supplies, and to doctors’ appointments. 

Although I had once complained about being at the wheel full-time, and I have returned to that role, I’m not resentful. Tommy said he didn’t miss driving. He repeated it with two thumbs down.