*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.

Tuesday, July 24, 2012

When the Caregiver Needs Care

So I’m on the appliance store’s website and thinking the 5 cubic foot  Frigidaire White Chest Freezer at $197 might be a good idea. I could fill it with the pack of 4 Palermo pizzas I spotted at  Costco, and dozens of packages of frozen vegetarian dinners that my husband likes. That way, when I go to the hospital for two days, and when I’m thumping around on crutches, or with a cane, or pushing a walker, Tommy can possibly prepare meals.

My hip replacement surgery is scheduled for Sept. 20, eight months after two orthopedic specialists said, “You’re limping. It’s not your back, it’s your hip.” X-rays verified arthritis had eroded the cartilage in my right hip and the spooky, “bone on bone” was the culprit.

“Do it sooner rather than later,” my neighbor, the physical therapist, advised. Others chimed in with supportive quotes like, “wish I had done it 10 years earlier,” “I feel like a teenager again.”

But thoughts of any surgery, hospitalization, and rehab bumped up against my care-giving responsibilities. How would my husband fare if I had to be gone from him overnight? How would he continue his three-times-a-week exercise routine at the Y if I couldn’t drive for at least four weeks? Laundry,  grocery shopping, and this-and-that, kept me postponing a visit to a surgeon.

When I admitted I could no longer walk even once around our neighborhood park, I booked the appointment that led to the scheduled date. The surgeon concurred, “If medication and injections no longer work, surgery is the only option to relieve the pain and get you walking easily again.” He penciled me in his hospital schedule, gave me instructions for the interim (continue my cautious workout routine), and told me his nurse would be in touch. My planning began.

I alerted dozens of relatives, neighbors, and friends to my due date. Their responses: “I can help,” “Count on me,” “Whatever you need,” eased my mind. And when I told my husband the September date, and assured him his routines would continue unabated, he gave me two thumbs up.

I relaxed even more when I replayed a scene in my head. It was the first meal Tommy made for me after we met in 1996. He had been a bachelor for 15 years following a first marriage.  I was separated from my husband of 30 years and living in a new townhouse a few doors from Tommy’s apartment.

“This is lovely,” I remember saying as I toured his place. I thought he must have spent time tidying it up for my visit, but now, after having been married to him for 14 years, I realize he’s an orderly person and his apartment was likely untouched.

Tommy was smitten with me back then -- I have letters and notes to prove it. “Sit here,” he had said, pulling out a dining room chair slowly so it wouldn’t scrape or shriek. There was a place mat, I’m sure, and silverware on one side of a dinner plate. (I have since demonstrated how they are separated: fork to the left, knife and spoon on the right.)

Our meal was broiled chicken, cooked squash, and... What was the starch? I can’t recall. But I so remember the squash because I have replicated his recipe many times since then. (Brown sugar stirred into the defrosted and cooked block.)

The other thing that sticks in my memory of my bachelor Tommy was his Friday nights at the laundromat. As he described his weekly routine to me,  I could see my middle-aged swain sitting on a chair next to an empty shopping cart, a paperback mystery in his hands. One load of his laundry is soaking and spinning.

When he moved in with me, just a few months after the chicken and squash dinner, I took him by  hand to my washer and drier. “No more laundromats,” I said. I was happy to declare this. “Terrific,” he said as he put his arm around my waist and kissed my cheek.

So, why am I stressing? My husband can no longer speak, but he can certainly cook a frozen pizza and place an Amy’s fake meatloaf dinner in the microwave.  And, although Tommy hasn’t had to tumble a load for 14 years, I bet he could follow the instructions permanently imprinted on the inside cover of the Whirlpools.

If I purchase the extra freezer I could include several blocks of squash in the inventory. My husband’s memory is intact; I’m certain he’ll remember the recipe. Brown sugar is the key.

Tuesday, July 17, 2012

Crime Scene Investigation Chicago

It was like an episode of C.S.I. when the team prepares to search a dumpster for some vital clue. I was pulling on a pair of white vinyl exam gloves -- latex free, powder free -- and smoothing each finger so the glove would hug each digit. 

I used an empty plastic garbage bag to hold the contents of our tall kitchen trash can. Unlike the TV investigators who would be seeking elements of a crime, I was hunting for Tommy’s lost keys.

The receptacle was an inspiration and my last hope. My husband and I had already yanked inside-out all the pockets of his clothing. Had already peered under the bed, under the nightstand, under the couch cushions, under the couch. When all of these turned up empty, a dark thought entered my head: Tommy must have left them in the front door and some miscreant absconded with them.

So, I decided to change our morning’s plans. “We’ll go to Sunday breakfast,” I told my husband, “but instead of continuing on to do our banking and our grocery shopping, we’ll come home straight away. I’ll call a locksmith then to change our bolts.” He gave my plan two thumbs up.

As a devotee of all crime shows, I figured that whomever purloined the keys would be watching our house and burglarize it the minute we left. So after exiting the driveway, we drove around the block and crept back home. Since nothing was amiss, we proceeded to a nearby diner.

I raced through my egg white omelet with thoughts of my iMac and iPad being lifted from the house and piled into a white van with the misleading logo of a repair company. “Finish your coffee,” I said to my husband. I was already standing and packing up. “We’ve got to get home.”

No white van was parked in front of our house. Inside, my Apple products were safely tucked in their spots. Nothing had been disturbed. Still, I called a locksmith. While waiting for a callback, I decided on the dumpster-dive routine.

One by one I plucked. Gingerly. First, I lifted out a white cone-shaped coffee filter filled with the morning’s Trader Joe’s French roast. Next, crumpled paper towels that earlier held the ice pack used to soothe my aching back. Onward to dust and dirt swept up from the kitchen floor. Finally, I drew out several tiny foils that once wrapped around miniature chocolate candies.

And there they were: Tommy’s keys, staring up at me as if to say Ta-da! First, I cancelled the locksmith. Then, dangling the keys, I raced upstairs to our bedroom where my husband had not given up the search.  “Look,” I said. “I found them! They were in the garbage.” He grasped the keys, smiled, and plunged his fist deep inside his pocket.

This is what I figured happened: Tommy had left our neighborhood Block Party before me. He let himself into the house, removed his keys from the lock, but kept them in his hand. Then, he went straight to the freezer, plucked a candy from the door’s shelf, unwrapped it, and tossed foil and keys into the garbage.

I could ascribe Tommy’s lapse to his illness, but then a list of my follies -- and that of my two daughters -- popped into my brain. Once, I left my fully-loaded backpack on the floor of a local McDonalds -- overnight. Gratefully, the manager spotted the bag and held it for me until I came for it the next morning.

Another time, I left my wallet on the counter at Trader Joe’s. I didn’t discover my loss until I got home and was about to put away my receipt. An eagle-eyed employee had spotted it and kept it safe until I returned within the hour to retrieve it.

I remembered Faith’s story of leaving her MacBook on a seat at the boarding gate and not remembering it until she was belted in. A plea to the flight attendant miraculously won her an escape to pick it up exactly where she had left it.

And Jill left her MacAir still charging at her sister’s house after she had hugged goodbye and departed for Los Angeles. Federal Express brought it home to her within two days.

I relate these tales -- you are likely already contributing your own lost and misplaced examples -- to emphasize that sometimes, missing objects are not a result of some sort of theft, but instead are just a case of plain old absentmindedness. Nothing more. 

Monday, July 9, 2012


Tommy and I are on a subway platform in the Loop waiting for the Blue Line to take us home. I’m leaning on a metal column and peering down the track to spot the headlights of the next westward bound train.

My husband has positioned himself on the opposite side and selected his own pillar for support. His eyes are riveted on a pair of musicians a few feet from me. The male plays a guitar and the woman sings -- a Spanish song, quite lovely and a nice respite from the clang of trains and chatter of waiting passengers.

An open guitar case is at their feet. Some paper bills are already strewn inside from earlier donors, and perhaps the duo has seeded the case to encourage more.

I leave my train-watching to focus on my husband. I stare as his hand reaches into his pocket. I knew this would be coming. His eyes are misting as he pulls out his wallet and extracts a bill, which I’m hoping is one dollar. He  drops it into the guitar case and the duo nods a gracias in his direction.

“Musicians are okay,” I had told him earlier. “But the panhandlers on the corner are scam artists.” I believe this is true, for I’ve seen one on crutches suddenly able-bodied and sauntering from his spot near our house.

My husband obeys this rule. As long as he can drop a bill into a musician’s case, he’s a happy philanthropist.

Since I didn’t know Tommy in his younger days, I can’t attest to his generosity back then. But, because he’s always been frugal, I’m assuming he wasn’t so quick on the draw with street musicians and beggars.

I could be wrong, but I think the new largess is part of his current condition.The frontal lobe of the brain affects emotions and ever since his began to deteriorate, he’s become a softie. Along with his charity, he’s a weeper at sad and happy television shows, and bar mitzvahs and weddings.

When my husband begins to tear up, the celebration hosts are touched. “Such a sensitive man,” I imagine they whisper to one another.

I’ve done a lot of reading about Tommy’s condition and am relieved to learn he has not taken on another emotion that is sometimes linked to the illness: rage. If anything, he has become kinder (witness the charity), more sentimental (the tears), and softer. 

Because he can no longer speak, he doesn't send irritating comments to television commercials, obese strangers, or other innocent targets as I once complained about. I understand now those slurs were the beginning of his brain’s degeneration -- inappropriate responses are a classic symptom. I haven’t explored if these barbs are still in his head; I prefer to think he no longer holds them.

Today in the subway, I say to Tommy, “Honey, please show me what you gave the musicians.”  He opens his wallet and points to a dollar bill. “Good,” I say. “Now be sure to tuck your wallet deep in your pocket."  He does, then pats it for emphasis.

At the end of the line, when we have descended the stairs, a panhandler is at the stoplight near the expressway. He is holding a sign, “Homeless. Need Food” and is limping toward cars that are stopped and waiting for the light to change.

I turn to look at my husband. I see his hand reach for his pocket. “Tommy,” I say. He looks at me, nods his head, and drops his arm at his side. I take his hand in mine as we cross at the Walk sign. My husband glances back and watches the guy continue to hobble dramatically along the cars.

“Fake,” I remind Tommy. He nods his head in agreement. When we reach the other side, I look back and send a silent suggestion to the grifter, Should’ve hummed a few bars.