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

Tuesday, April 24, 2012

Food and Music: A Perfect Match

I’m not sure when he noticed me. Perhaps when I was opening Tommy’s tiny catsup pouch with my teeth. Or, when I put my hand on my husband's, and said, “slow,” reminding him to chew one mouthful before taking another.

The stranger waited until we finished our lunch and Tommy was heading for the door before he stopped me and said, “I hope my wife takes such good care of me when I need it.” I preened and thanked him.

This monitoring of my husband’s meals is a new task in my caregiving routine. His Primary progressive aphasia affects speech and can also impact swallowing. So, our mealtimes together have taken on a new watchful ambiance.

As Tommy and I left the restaurant to walk, arm-in-arm, I thought about our very first meal together. Vigilance was absent back then. Our first date was at a Mexican restaurant that was near Tommy's apartment and my townhouse.

As we dipped corn chips into salsa, we revealed our favorite things. We were like game show contestants hoping to find correct answers. We matched on Masterpiece Theatre, jazz vocalists, dogs and cats, and quiet nights at home. When we moved on from chips and salsa to tacos and burritos, our lists became more specific. And when we learned we had the very same favorite song, “It Never Entered My Mind” by Rodgers and Hart, we felt we had won first prize.

At my door after the meal, we exchanged a goodnight kiss, neighborly, but with promise. Tommy said he’d call. I was certain he would.

The very next evening, instead of that phone call, he knocked on my door. “I have a present for you,” he said.

We sat on the couch as I unwrapped a Johnny Hartman CD that included “It Never Entered My Mind.”

“When, how?” I asked. I was touched.

“I took the El downtown and bought it at a music store,” he said. “Do you like it?"

We played it then, and again at our wedding two years later when my daughters walked me down the aisle in a Las Vegas ceremony.

While music has continued to be part of our lives, our meals have changed. Early on, we'd go to dinner once a week with friends. We'd argue over politics, discuss news headlines, catch each other up on far-flung children and grandchildren. When Tommy could still get a few words out, our dinner companions would try to keep him in the conversation. If necessary, I'd step in to translate.

Eventually, though, my husband could not speak at all. Our dinners out diminished because it became too painful for me to see him silent, on the sidelines. The invitations still came, but I accepted less and less, except for special occasions.

Tommy and I have compensated by upping our lunches out. Just the two of us. Our fondness for food, just like our taste in music, is a perfect match. Hand-in-hand, one day a week, we go to our favorite barbecue restaurant. On another day, we’ll patronize a neighborhood Greek diner, and often, we opt for the city's most popular hot dog place.

My husband peruses menus with the pair of reading glasses I keep for him in my tote. He'll point to his choice, but I already know them: all of the vegetarian sides at the barbecue place, spaghetti with marinara at the diner, and a veggie dog with everything on it at the hot dog joint. We share the fries.

On the afternoon when we arrived home from the barbecue place where I was praised for my caregiving, Tommy flopped on his couch to watch TV. I settled on mine, and since no conversation would be forthcoming, put on my iPod headphones. My musing about our first date at the Mexican restaurant, where we matched on music, was still in my head. I scrolled through the list until I found our favorite song, “It Never Entered My Mind:”

I don't care if there's powder on my nose. 
I don't care if my hairdo is in place.
I've lost the very meaning of repose. 
I never put a mudpack on my face. 
Oh, who'd have thought that I'd walk in the daze now?
I never go to shows at night, but just to matinees now. 
I see the show and home I go. 

Once I laughed when I heard you saying 

that I'd be playing solitaire, 
uneasy in my easy chair. 
It never entered my mind.

Once you told me I was mistaken, 
that I'd awaken with the sun
and order orange juice for one. 
It never entered my mind.

You have what I lack myself
and now I even have to scratch my back myself.

Once you warned me that if you scorned me
I'd sing the maiden's prayer again
 and wish that you where there again
to get into my hair again. 
It never entered my mind.

Monday, April 16, 2012

Four Times Around

Tommy holds two hands in the air. Two fingers on each hand are raised. He uses one hand to draw a circle in front of him, as if he were twirling a lasso. He draws that circle twice. His face shines with sweat and he is smiling.

“Four times around,” I say. “That’s two miles!”

He nods, “yes.”

My husband’s first attempt, to walk around the park for exercise instead of riding his bike, is a success. This shouldn’t surprise me; he used to be a runner.

“Half marathons,” he said back in 1996 when we first met. He was 61, muscled with no visible fat, divorced, and a bachelor for 15 years. I was 58, separated from my husband of 30 years, and on the lookout for a second.

Just a few months after our first hellos and a sweet romance, little by little, Tommy moved in with me. His exercise gear came first. Dozens of T-shirts, imprinted with running event logos, scooted my Gap T’s along the closet rod.

I relinquished one dresser drawer, then two, for his shorts, tank tops, and tube socks. And when his well-worn running shoes jumbled onto the closet floor, my high heels and sandals adjusted.

Once my divorce was final, Tommy and I married, and his workout stuff claimed permanent residency. Several years later he stopped running. Plantar fascia, or some other pain in the bottom of his foot ended it. To keep in shape, he switched to an elliptical machine at the local Y. And, when weather permitted, rode his Schwinn.

I’m happy to see my husband continue to be active today. He has Primary progressive aphasia (PPA), a degeneration of the frontal lobe of the brain that affects speech. In some cases, the illness impacts physical condition. Perhaps Tommy’s allegiance to fitness has deflected this symptom.

Because he communicates by gestures, nods, and words on note pads, when he rides his bike, I insist on him carrying his cellphone, notepad and golf-sized pencil. This way, if he were to have an accident, he could communicate to a passerby and get help.

I thought I was doing well protecting my husband, but a few nights ago, I changed my mind. Tommy and I happened to be undressing for bed at the same time. Usually, I turn in two hours before him. But because we returned home late from a Passover dinner, he joined me upstairs.

He pulled off his sweater and an old running event logo T-shirt he uses as an undershirt. When he started to shuck his slacks, I saw it. Tommy’s body, still slim as the day we met, now bore a black and blue bruise. It was imprinted on his left thigh and resembled a drawing of a map of Italy. Long, wide at one point, then narrowing.

“Tommy, what happened?” I asked. I ran my hand over the surface of the bruise, as if I were stroking a kitten. “Does it hurt?”

He shook his head “no.”

“When did this happen?” No answer. This bruise could’ve been on my husband’s thigh for days or weeks.

“Are you sure it doesn’t hurt? I’ll call the doctor in the morning,” I said.

A head shake, “no.”

“Did it happen at the Y? Did you fall off the elliptical?”

Another head shake.

“Did you fall off your bike?”

A nod, “yes.” Bingo.

“When?” I sat down on the edge of the bed.

He took a pad and pencil from his nightstand -- we have these all over the house -- and wrote, “2.”

“Two days ago? Why didn’t you tell me?”

A shrug as he replaced the pad and pencil.

To me, the bruise appeared to be more ominous then a tumble off a bike.

“Were you hit by a car?” My heart was pounding.

Head shake, “no.”

Before I could continue, he got into his side of the bed, turned his back to me, and pulled the covers over his head.

“Honey,” I said, loud enough to penetrate his shield. “You have to take a break from bike riding until that bruise heals.” I meant forever. “If you want exercise, how about walking around the park? Once around is half a mile.”

This day, when Tommy returned from the park and triumphantly acted out his lasso routine, I breathed easier. After all, how much trouble can a fat-free former runner, banned bicyclist, and current walker get into as he strides four times around?

Monday, April 9, 2012


My suitcase lies open and empty on the bed in our spare bedroom. Clothing, all black, to make wardrobe accessories easier, are in small stacks surrounding the bag.

It’s been a year since my last trip to Boston to see my daughter Faith, and it was 16 months ago when I travelled to the West Coast to visit my other daughter, Jill. There was a point I’d fly to either coast three times a year. Often enough, I figured, so my grandchildren would know me in the flesh, not merely as an iChat image.

“Honey,” was how my trips typically began with my husband. “I miss my kids.”

Tommy, a stepfather who believed three times a year was more than enough, would need coaxing. While I’d be content to shadow my family, he’d need a break from that togetherness. If the target was Boston, my husband would agree to join me because he liked the city’s easy public transport that allowed us to tour on our own.

L.A. was another story. “Sun, golf,” I’d offer.

“No, I’ll stay home and take care of the dog,” he’d say. I knew Tommy didn’t like the city’s sprawl, and since neither he nor I were brave enough to risk its roads in a rental, he hated being dependent on others for sightseeing.

But, the three-times-a-year timetable, and my husband’s voiced responses to any trips, dissolved after his condition worsened. Today, Tommy can barely get a word out, communicating with clues written on post-it notes.

“You’ve got to find some way to travel,” Jill had said. “It’s been over a year since you’ve been here. Look into home health agencies.”

I did, and was relieved when Tommy didn’t object to an aide taking over for me one day a week. With her in place, I started to make plans for a four-day trip to Los Angeles.

Along with the aide, I enlisted our dog walker/house sitter to sleep over for the nights I’d be gone. Because she’d be at her job during the day, I asked two of my cousins to take Tommy to lunch a few times. My ex-husband said he’d visit on one of Tommy’s unscheduled days. Neighbors volunteered to pop in and out. All were instructed to call me after their shifts, to let me know Tommy and the dog were okay, and to convey post-it note questions.

I was covered. I bought airline tickets. I placed the suitcase and black wardrobe on the bed, and added a bathing suit and sandals.

Several days before I was to fly ORD to LAX, I called my daughter. “I’m worried,” I said, “Tommy sometimes gags when he eats. I think it’s a side affect of his condition. Something about the part of the brain that screws up his speech messes with swallowing.”

“Mom, when did that start?” Jill asked.

I was embarrassed. “Actually, a few weeks ago,” I said. “When I see it happening, I tell him to take small bites, put the fork down between mouthfuls. But now...”

My daughter interrupted, “Mom, you can’t let him eat alone when you’re gone.”

I called the home health agency. “Can you send aides to monitor his mealtimes?” I asked.

“All set,” I told my daughter.

Then, I thought about it. I imagined Tommy confused in that whirlpool of caregivers. I worried -- even with all those overseers in place -- would one remind him to take his daily medications, especially the thyroid pills? Would another ask him to smile, as I do every morning, to be sure he’s inserted his dental bridge? Would another check the kitchen sink to make sure he’s turned off the faucets, and the front door to confirm he’s removed his keys from the lock? And would his meal companions be vigilant?

And what if he was frightened and wanted me home?

“Canceling,” I texted Jill.

“What happened?” she asked in the phone call that followed.

“I can’t leave him,” I said.

“I thought you had your team in place.”

“I don’t know what I was thinking,” I said. “He could never handle it.”

I could never handle it. I couldn’t relax in my bathing suit at poolside. I couldn’t enjoy my grandsons’ faces or antics. I couldn’t devour time with my daughter. My head would be back in Chicago, worrying about my husband. I’d startle at the ping of a text or ring of a cell, wondering if the news would calm or scare me.

The empty suitcase remains on the bed. Instead of returning the clothing to closets and dresser drawers, I’m plucking them one by one for my daily wardrobe. Eventually, only the empty suitcase will remain. And, for now, me.

Monday, April 2, 2012

Easy Rider

I’m standing in the kitchen looking out the back window towards the garage. My husband has just removed his Schwinn from where it rests in the corner. He crowns his head with a bicycle helmet and adjusts the strap. Then, he releases the kickstand, mounts, and pedals off. He has left the garage door open.

I’m not upset at this gaffe because he is wearing his helmet and has remembered to take with his cellphone, notepad, and golf-sized pencil. They are gone from the counter where he usually keeps them. A good sign.

I’m vigilant this morning because yesterday, when I was unaware, he rode off, leaving the helmet on a hook in the garage, and the phone, pad, and pencil on the counter. And, instead of protective covering, he was wearing a baseball cap topped with AM/FM radio headphones.

When he returned from that bareback ride, he entered the house and was still adjusting the volume on his headphones when I blocked his path. I stretched my arms to grab his two shoulders. “Take them off and look at me,” I said. “You can’t hear when you have them on.”

I didn’t say this, but I thought, Isn’t it enough you can’t talk, why do you want to squelch another of your senses? I didn’t voice this because we avoid discussing his condition - Primary progressive aphasia, a degeneration of the frontal lobe of the brain that affects speech.

I reached up to remove one of his ears pads. He did the same on the other. “Honey,” I said, looking straight at him so he couldn’t miss my words. “You cannot, must not, wear these earphones when you’re riding your bike. It’s against the law.” I don’t know if this is true. In Tommy’s case, it should be.

“You have to wear your helmet and take with your cellphone and notepad.” He nodded yes, and started to put the radio earphones back on his head. "Remember, honey," I said, “if you should run into any problems on your ride, you need the notepad to tell someone to use your cellphone to call me." He put two thumbs up. He got it; I think.

Today, with all evidence showing he has heeded my words, I use the remote to close the garage door and head for the couch. I need a break. As I sink into the cushions, I recall the first time I saw Tommy on his bike. He wasn’t wearing a helmet back then, but we were merely neighbors, not yet a couple. If I registered any problem with this risk, I must’ve have kept it to myself.

The year was 1996 and I was separated from my husband of 30 years and had recently moved into a new townhouse on Henderson Street in Chicago. In the mornings, Tommy and I would wave, him on his bike, me walking my dog.

In the evenings, his wave turned into a pause at my gate to pet the dog. We’d chat a bit. Soon, we became a twosome, and then after my divorce, a married couple.

Throughout our 14 year marriage, Tommy continued to ride that old bike, until one day, when the garage door was left open, it was stolen. We replaced it with the Schwinn, and added the helmet, lock, bell, and basket.

I wish I could send Tommy on the road as he was when we first met: a helmet-less, happy-go-lucky, assured rider. But I can’t, and I don’t. I insist on the helmet, the cellphone, the pad, and the pencil.

These days, once he pedals off and clears the driveway -- protected in the gear I count on -- I make sure I close the garage door. Everything inside remains safe.