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

Tuesday, June 26, 2012

All For One, One For All

It’s a perfect day for golf. The sun is shining and the temperature is in the 70’s. There is no wind. Although I’m not a player, the weather delights me because it means Tommy will be hitting the links with his three friends.

This is Tuesday, the day of the week I cede responsibility for Tommy to the group I call the Three Musketeers. I fancy Barry, Hal, and Marshall as characters from the Dumas novel because the way they care for my husband, their motto must be “all for one, one for all.”

I’ve driven Tommy to the golf course, and paid for his round and the rental of a pull cart. After he rolls his clubs onto the practice green, I take a seat on a concrete bench to await the arrival of at least one of the Musketeers.

While my love for the Musketeers could be considered self-serving because they give me a day off, Tommy enjoys their personalities. Each player adds charm to their game that keeps my husband entertained for hours.

Barry is the first to arrive. He is an artist, retired high school teacher, and devotee of dancing and jazz. “You’re here!” Barry says as he approaches my bench. His golf bag is slung over one shoulder like artillery. Sometimes, he can stop by our house to pick up my husband for their weekly outing. But today, other appointments interfered. “Don’t worry, I’ll bring him home,” he always reminds me. All for one.

“Not a problem, I can drop him off,” I tell Barry. I’m sincere. I enjoy this small respite on the concrete bench. I enjoy seeing each Musketeer arrive from the parking lot. But mostly, I enjoy watching my husband on the putting green. His stroke looks perfect -- careful, slow -- as the ball slips through the grass and drops into the cup.

I never join the foursome on the course itself, so I can’t ogle Tommy’s swing. But, I know he still lives by his mantra, “hit ‘em straight.”

“He’s still the best golfer in the bunch,” Hal, aka Tiger, assures me. Hal is a retired advertising and sales promotion executive, which accounts for his proficiency as the Musketeer’s organizer. He sets up tee times and starts the round of phone calls to alert the players.  Hal’s acted in local theatre -- a talent that surfaces when he narrates his latest joke.

The third Musketeer, Marshall, is a retired attorney. He’s the young-at-heart and the eternal optimist in the group. In Marshall’s eyes, the glass is always half full; sometimes overflowing.

“Beats me every time,” Marshall will tell me when I ask how their game went. Each Musketeer is aware I hang onto positive assessments. And a good game brings my husband home with a smile. When he opens the front door, his hand outstretched to show off his score card, his face is as bright as the morning’s sun.

There was a time when Tommy was obsessed with perfecting his golf game on his own, not only on Tuesdays. We bought the expensive cable package because it included the Golf Channel, he subscribed to two golf magazines, and there was never a question as to what my husband desired for gift-giving celebrations. “Book about golf,” I’d tell my daughters when they queried. I’d purchase the same.

I’d encourage this obsession. “Let’s go on the Internet and we’ll search for DVD’s,” I’d say. Tommy, who shuns computers as if they were unexploded bombs, would pull up a chair next to mine. “That one,” he’d say, as I scrolled the offerings. After the DVD’s arrived, Tommy would overcome his aversion and use my laptop as screen.

There were memorable incidents during that time of my husband’s addiction. Errant balls pinged a dent in the bedroom’s sliding glass doors and in one of our living room windows. His determination to use real golf balls when he practiced at the nearby park, instead of whiffle balls, would send me, a neighbor, and the park director to his spot. We pleaded with him to switch; he turned us all down.

This season, all practice in the house and park evaporated. We still have the Golf Channel, but Tommy only lands on it while flipping the remote. No new DVD’s have been ordered. And when my daughters asked about Father’s Day, my answer was, “Sweatshirt, no logo, medium.”

Gratefully, my husband still relishes his Tuesdays with his Musketeers. That’s when Barry, Hal, and Marshall watch over him, and I take off. All for one, one for all. Cue La Marseillaise.

Monday, June 18, 2012

Tools Shed

I use a scissors to slit open the label covering the rigid plastic box. Once it’s removed, I can unfold the top. The box is grey, tough-looking, which is fitting for this Durabuilt 144-Piece Household Tool Kit.

With the kit spread open from the center, the box is exposed. It holds a wrench, pliers, scissors, screwdriver, hammer, and other tools. All packed in a  convenient carrying case.

The case has a handle, but when I lifted it off the store shelf, I found it too heavy, so I cradled in two arms and placed it in my shopping cart. My guilt felt as heavy as the tool kit.

It was just two days ago when I made this offer to my neighbor:  “I”m on a mission to clean our basement and rid it of  junk," I said to John. "Tommy has a wall full of dusty, old tools he doesn’t use. Would you be interested?”

“What do you want for them?” he asked.

“If you haul them out, along with all of the other clutter, they’re yours.”

Of course, I had asked Tommy first. “Honey,” I said, “how do you feel about giving John the tools in the basement? You’ve got enough in the kitchen cabinet for repairs. He plows our driveway in the winter; this would be a way of thanking him.”

Tommy gave me two thumbs up. That was enough to give me clearance for full speed ahead on the de-shedding.

It was a different scenario when we first moved into this house in 2000, two years after we were married. I was happy watching my new husband assemble his basement workroom. He mounted a peg board on a wall, inserted hooks, and one-by-one attached tools he had accumulated over the years.

And he continued to buy more, often calling out to me, “Home Depot” as he rushed out the door. He’d return with just the right-sized hammer, or perfect wrench, or saw, or some other needed implement.

I’d encourage him. “Honey,” I’d say, “I need a shelf for my office. Can you do that?” Any project  I could think of that would get Tommy down the stairs to gather materials would make us both happy.

The piles of wood that my husband accumulated -- and that John eventually packed into the recyclable can -- were stockpiled during Tommy’s alley trips. When we walked the dog, he’d pause at each opening, check to see if anyone had discarded wood, and if so, change our direction until he had the lumber on his shoulder. On the route home, he looked like the leader of a Christmas procession.

On the day of the removal, John shouted up to me, “Come down and let me know if there’s anything else you want out of here.”

“Want to help us?” I asked my husband. He put two thumbs down, put on his radio headphones, and left the house for his afternoon walk around the park.

In the basement with John, I waved a hand across the wall of tools and pointed to lengths of twine, rope, extension cords that were looped on a hook, to dusty containers that held casters of various sizes, to plastic bags filled with bits of unknown origin. “All out,” I said.

After John carted away the debris, and left the house, Tommy returned from his walk. He opened the basement door and started down the stairs. I followed.  At the foot of the stairs, we looked at the bare wall that once held the peg board and tools. We walked further in and saw the basement, junk-free with its remaining file boxes, golf equipment, gardening tools, and paint supplies neatly stacked on metal shelves.

Tommy's worktable was clean except for the TV, cable box, and tape player. He tried the devices; they were working properly. Before he turned to go back up the stairs, he stared at the blank wall. He made no gestures to tell me what he was thinking. No thumbs up or down. No post-it notes with written clues. He just stared.

I put a hand on his arm, and said, “Honey, when we go to Target this weekend, I’ll buy you a new tool kit. Okay?” He put two thumbs up.

So that’s what I did. Now the Durabuilt 144-Piece Household Tool Kit with "Ergonomic Grip, Wrench, Pliers, Scissors, Carrying Case, Screwdriver, and Hammer" that carries a "Lifetime Limited Manufacturer Warranty," sits open and waiting on the workshop’s table.

I have to think of a project that needs Tommy’s attention. A new peg board might be a start.

Tuesday, June 5, 2012

The Screening Room

“Looks good!” says the speech pathologist. She is viewing an x-ray of my husband’s head.

I’m watching the same picture. A second pathologist, on the other side of the wall is giving Tommy instructions. He is compliant.

An apparatus is pointed at him as he swallows a spoonful of stuff. The viewer and I watch the screen as a snake-like strip wriggles unimpeded from his mouth to his throat and down into his esophagus.

“Next!” she calls out beyond the wall. The feeder nods her head.  She dips a spoon into a plastic cup and offers my husband another dose of barium-laced food.

These doctors have assured me the amount of radiation used in this test is small and not harmful, and will only take about 10 minutes. I am happy to hear this because I can see Tommy is antsy.

“Are you comfortable?” the feeding pathologist asks my husband. He nods “yes” but soon rises from his chair to see what’s going on behind our wall.

“No, no, sit down,” the two doctors shout as the screen suddenly blanks.

He sits, then looks straight at the machine that is targeting his head. The feeder offers my husband another spoonful -- thicker this time --  while the viewer and I turn our focus back to the x-ray.

“Good,” she says.

With each “good,” my hopes rise. If  Tommy gets all “goods” it will mean he, and I, will be saved from moving to a new, and unwelcome path in caregiving. If he flunks this Cookie Swallow Test, I’ll be directed to change his diet. I’ll be forced to blend his food, monitor consistencies of each dish, and have someone at his side as he eats.

With each swallow, I teepee my hands in prayer because I also wish to keep my husband from sliding further down the role of “patient.”

This test was initially sparked by a a conference for caregivers. When a nurse reported a case of a choking, I thought, Tommy sometimes coughs when he eats, is this “choking?”

“Slow down” became my new command at the table. “One bite at a time,” I’d say.

I tried to explain. “Honey," I said, "that condition that makes it hard for you to speak might mess with your swallowing. I don’t want you to choke. Please chew and swallow before you take another bite.”

In long-distance calls to my daughters I confessed, “I hate this. It’s taken all of the pleasure out of eating.”

“Think of the alternative,” they said. “Tommy choking, you trying the Heimlich, you panicking. Is that what you want?”

“No,” I said. “I’ll talk to his doctors.”

Although they discounted the nurse’s report, and said they’d never heard of a patient choking, the doctors concurred a Cookie Swallow Test might be a good idea.

So here I am watching Feed, Swallow, Wriggle, Smooth Passage. As the spoonfuls proceed, I think about our mealtimes, which until recently, had been a peaceful part of our day.

Ten years ago Tommy and I tried vegetarianism. Our switch came after hearing friends credit their improved health and energy to their plant-based menus. And, after reading "Diet For A Small Planet," our own mantra became, "nothing with a face," and "nothing that has a mother."

I lasted six months. A diabetes test (it runs in my family) convinced me the amounts of carbs I'd been consuming -- primarily pasta -- put me at risk. And even when the results turned out to be false, I admitted I longed for forbidden foods.

Not Tommy. He has remained a vegetarian since his first bite of tofu. He never complains nor envies when I'm downing fried chicken or burgers. He happily eats his vegetarian meals, including those plucked from store freezers and microwaved.

“He did fine,” says the speech pathologist. She is happy, too. My attention snaps back to the x-ray.  “I don’t see anything that would cause me to suggest a change of diet.”

“His coughing?” I ask. “What about that?”

“Not a problem,” she says. “In fact, tell him to clear his throat occasionally. That helps the food go down.”

I race around the wall and grab my husband. “You passed, Honey, you passed!” I say, elated as the parent of a Harvard grad.

That evening at the dinner table, Tommy and I indulge in a guilty pleasure we've enjoyed throughout our marriage: we disdain talk in favor of watching television.

Now, as we dig into our dishes: soy meatballs and spaghetti for Tommy, take-out rotisserie chicken for me, we fix our eyes on the set and a Law & Order re-run.  The only words, the only commands, come from the screen.