The Ambivalent Widow

At first, sleeping on Tommy's side of the bed seemed like a good idea: It was a quicker trip to the bathroom and would eliminate the nightly toe stubs endured during my darkened path from my side.

But, in this new space, I hadn't had a full night sleep since my husband died November 2. At first, I blamed it on a sort of Post-Traumatic Stress Disorder following three demanding events: my hip replacement surgery, 10 days in the hospital with Tommy, and finally an additional 12 at home with him in hospice care

Then, I dismissed the PTSD theory and fixed on this: Tommy, despite his journey to heaven, wanted his side of the bed back. The 11 p.m. and 2 a.m. wake-ups I'd been experiencing were really my husband elbowing me over to my side.

So, last night I obeyed. I returned my iPad to a charger on my bedside table, and lined up on the nearby windowsill, my water bottle, Melatonin pills, Tylenol, and Neutrogena hand cream -- the same setup prior to my switch. I arranged a mini-memorial on Tommy's bedside table with his portrait, his beloved AM/FM earphones, the 40-year-old wallet he refused to replace, his wristwatch that displayed date along with time, and his wedding band.

Then, I scooted onto my side, pulled up the covers, and bawled. My partner was gone. His side of the bed was empty. He would never return for our nightly spooning, or our ritual of him patting me on the tush and me returning a mild pat to his head, and finally, our exchange of “love you,” before falling asleep.

On my side of the bed, I continued to wail as my stored up grief filled the room. I realized I'd been so intent on getting my life back together, that I hadn't allowed myself to mourn my loss. Oh, I had cried each time I left his thinning and weakening body while he was in hospice, and I cried when he finally gave up his last breath, but I hadn't cried over his absence.

After I could sob no longer, I turned over, clicked on iTunes, and slept for 8 hours. There were bathroom trips cautiously tread, but I willingly took this longer route, then snuggled into my old spot hugging his pillow as substitute.

This new role for me as Widow has me ambivalent. There are times of dark loneliness and sorrow. But there are also times of relief that my husband's suffering has ended, and there is glaring awareness I have gained new freedom.

While Tommy's death was sudden and unexpected, my caregiving for him was long and challenging. He was diagnosed with FTD/PPA in 2009, but there were signs my husband had the illness years before.

As Tommy's symptoms worsened, he relinquished his car keys and I became his chauffeur. I feared letting him venture out alone, or even being in the house on his own. Trips to my out-of-town daughters ceased, because he would not be able to call 911 if he got into trouble. My calendar revolved around him. On Tuesdays, if his golfing buddies had a game and took responsibility for him, I was free to make plans with friends. When the boys bailed, I'd take Tommy to practice golf, and then we’d lunch together. I did not want him to be alone, to be without company.

Now, with my husband gone, and my job as caregiver canceled, I’ve booked tickets to Boston in November and Los Angeles in December. I’ve made lunch plans on days of the week that aren’t Tuesday. I take my time returning in the morning from the health club, unlike in the past when I made sure to get back before Tommy woke.

Tommy and I would have celebrated our 15th wedding anniversary January 13, 2013 -- an occasion we looked forward to. We planned to grow old together. It was the second marriage for both. We were content and happy. We rarely argued -- we were satisfied sitting on our facing couches, watching our favorite television shows, and early on, taking turns on the crossword puzzle.

My new solo routine is this: before I go to my side of the bed, where I evidently belong, I pause at Tommy's picture. I bring my fingers to my lips, then place them on his photographed face. "Love you," I say. I hear his response, clear as day, "Love you, too!" 

Then, I imagine my husband giving me another pat on my tush, this one indicating, “You go, girl. It’s your time now.” Anyway, that’s what I imagine.

An Untroubled Brow

This is what you look for in a hospice patient: the brow must be untroubled. Smooth, free of lines. There should be no grimacing. The face of the patient must be serene, peaceful.

Tommy has an untroubled brow. His face remains ruddy. His body is calm, arms propped on pillows to keep him comfortable, two pillows behind his sleeping head. A loose sheet covers his quietly breathing, thinning body.

Regularly scheduled doses of Morphine and Haldol, with an occasional drop of Atropine, are keeping my husband pain-free and tranquil, the goal of hospice.

Tommy, who worked out at the Lakeview YMCA three-times-a-week for 40 years, is hanging in. "There's no way of telling," doctors and nurses tell me. "Three days, three weeks?" Those estimates are not my husband's concern. His body will leave this earth when it is good and ready. I know this, I am prepared, even though at times I expect Tommy to yawn, raise his arms as if stretching, give me two thumbs up to indicate a good night’s sleep, then hop over the bed's steel sides, and dress.

That will not happen. My husband, when he decides he has had enough of his blubbering wife who strokes his head, holds his hand, and whispers "it's okay if you leave," will slow his breaths and that will be that.

Meanwhile, he is being cared for at home by me and a rotating roster of home health aides, hospice nurses, and Certified Nursing Assistants. A few of these people will be stellar -- like Stuart, the CNA who was originally hired to drive Tommy to the Y one day a week. Surprise: Stuart is receiving a PhD in nursing before he enters the college. I offered to write to Loyola's administration and tell them Stuart has completed all the necessary coursework.

Others I loved, like Rebecca, Qui, and Emile. Some I tolerated, and one I insisted never step foot in my house again. Along with inappropriate behavior; i.e. yammering loudly on her cell phone, she texted me constantly from the second floor for various items close at hand. But the straw was when she decided, without consulting me, to remove all of the supplies I had arranged in rows on our empty queen-sized bed, and place them instead on top of dressers, end tables, window sills, and on the floor of the shower hidden by a curtain.

"I wanted the room to look like a bedroom," she explained as she waved her hand atop the empty bedspread.

When the hospice nurse arrived, she shook her head and returned every box of gauze pads, suction tubes, bed pads, disposable underwear, lotions, and dozens of other supplies back to their original spots. "Much better," she said after all was returned. I hugged her.

I talk to my husband each time I enter the room. Once I pulled up a chair to read him a letter. Tommy had written it to me in 1996, two years before we married. By the grace of God, I kept it safe. My husband spoke of love, commitment, promises to care for me -- in beautiful handwriting, two pages full. At one point during my reading, he opened his eyes and looked at me, as if to say, "I remember writing that."

With every visitor that enters the house I say, "I'd like you to read Tommy's letter." Although his words were meant for me, I fear our friends will only recall the Tommy who struggled with aphasia and could no longer speak, who stopped reading mysteries, or who was unable to fix a broken cabinet door. I want them to know the Tommy who was smart, romantic, eloquent.

Many loved ones -- concerned about my well-being and ability to pay for ‘round-the-clock nursing care -- urged me upon leaving the hospital to place Tommy in hospice care in a different setting outside the home. “It will be overwhelming,” they predicted.

In a first email update to this group I admitted, “You were right, it’s overwhelming. But, I am doing it.”

Along with the hired caregivers, I am supported by friends, relatives, and neighbors who visit Tommy and me, who bring food and offer to handle any needed tasks. I have doled out assignments, from picking up Chicago hot dogs to taking my Honda Fit in for servicing.

We will get through this. Meanwhile, we keep watch for an untroubled brow.

How To Suction A Tracheotomy

My last blog post was Sept. 18, two days before I was to undergo a total hip replacement. That was a lifetime ago.

Today, more than a month later, my hip is nearly repaired and I am back to driving and usual activities. Sadly, tragically, those activities now include caring for my husband at home, with hospice and caregivers as support.

We have been through an unbelievable nightmare, with my dear Tommy suffering more than anyone else. It all started with swallowing. For several months he had to be reminded to chew one mouthful before taking another. Then, that routine started to deteriorate until he could not swallow anything. Sips of water or Gatorade were taken in, then spat out.

Dehydration was a worry. One evening, when I was already upstairs, I heard a thump. I ran down and at the foot of the stairs was my husband, awake, unhurt, but seeming to wonder what happened to him.

The following morning, Stuart -- a CNA (Certified Nursing Assistant) who had been driving Tommy to the YMCA several days a week -- and I took him to Northwestern's ER. He was admitted with severe dehydration. Because Tommy could not swallow -- which we all assumed was a symptom of his Primary Progressive Aphasia --- the ENT team recommended a tracheotomy (lest he smother) and a feeding tube for nourishment.

This is the part where the nightmare become so dark and frightening that we pray it is indeed something happening in our sleep. But, it was not to be; it continued when awake. When the ENT team attempted to insert a tube through his mouth to his stomach, they encountered a blockage, a mass. Doctor's diagnosis: "Squamous cell carcinoma of supraglottis. You are not a candidate for treatment for this cancer." Throat cancer. Aggressive.

Our decision was to bring him home to hospice care where he can be kept as comfortable as possible.

After 10 days in the hospital, on Oct. 21 we returned via ambulance to our house in Independence Park. Several neighbors had already been on board to assist with equipment delivery and to get Tommy all set up in our bedroom. Other neighbors wrote their phone numbers on slips of papers with the words, "anytime, 24 hours."

Now, my husband is hooked up to balky machines that provide oxygen and humidity with a tube that goes directly into his tracheotomy. Every few hours, he will cough, alerting me and a CNA, Rebecca, or other round-the-clock caregivers, that his trach is accumulating mucous and secretions and making it difficult for him to breathe. That's where the suctioning comes in. I watched the hospital nurses perform the procedure, studied a YouTube video, assisted Rebecca on her first suction, and then, miraculously did the cleanse, insert, twist, suction, and extraction on my own.

Of course, the big question is did his brain degeneration and aphasia cause the swallowing problem, or the throat cancer? The physicians say it could be a combination of both illnesses. Does it matter?

All that is important now, is keeping Tommy comfortable, peaceful, and pain-free. He is home, in his own bedroom. That's all I can ask for now.

Prince Charming

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.

Our mirth doesn’t exactly match the fairytale, but instead is my husband attempting to figure out where to put the elastic strap that crosses the instep on the shoes I use as house slippers.

“No, Honey, my foot goes under the strap and into the shoe,” I tell him as I put a hand on his shoulder to steady myself. But Tommy insists on putting the band on my heel.

I am unfazed; we have several days left to practice. I’m readying Tommy to help me when I return from hip replacement surgery and am not allowed to bend over to put on my own shoes. He is eager to show me he can come through for me.

Earlier that day at lunch, I deliberately dropped a napkin on the floor. “Honey,” I said, “this is a rehearsal. Can you pick up the napkin for me?” He did, with a grin. He was enjoying this gallant role.

My tests continued throughout the day. “Give me your elbow, please,” I said. Actually, this trial needn’t wait until post-surgery because I’m already a hobbler with my arthritic hip. “And walk slower, Honey, I can’t move this fast.” He complied, and like an escort leading an elderly patron to the opera, he moved one foot at a time.

At home, it was this request: “Keep your eyes on me as I walk up the stairs. Just in case I topple backwards.” Instead of viewing my assent from his spot on the couch, my Prince Charming rose and stood at the base of the stairs. He watched as I slowly practiced the step-to-step instructions in my pre-surgery pamphlet.

When I reached the top of the stairs, Tommy returned to the couch and his TV program. That was fine with me; he had completed enough tests to assure me he’d be a competent caregiver. And if I needed further evidence of his empathy for the ill, all I’d have to do is to recall an incident with an ailing uncle that convinced me Tommy would be a good mate.

My Uncle Nate was in a residential facility suffering from Parkinson’s and dementia. It was no longer safe for him to be at home. Tommy and I weren’t married at the time, just mature sweethearts when he accompanied me for a visit. As soon as they were introduced, Tommy said to my uncle, “Would you like to take a walk?” Then, he hooked an elbow and slowly ambled along the hallway with Uncle Nate.

As I watched the two men -- one a treasured figure in my childhood, the other a second-husband prospect -- I realized how important this trait would be in my life. Tommy would be someone I could count on, to care for me when the need would arise.

As it turned out, Tommy beat me to it. I’ve been the one wearing the caregiver’s cap. But I know, that if the situation were reversed, if I was the one suffering a variety of losses, my husband would not leave my side, nor protest his new responsibility.

So, we’re about to have a real-life test, albeit a temporary one. I’ll be in the hospital for two days (prayerfully), then home to rehab for three to six weeks.  Friends, relatives, and neighbors will be around to assist us both.

But there will be times during my return to physical health that it will be just my husband and I. While Tommy is silent in his requests, mine will be loud and insistent: “Honey, I want my cane,” I can hear myself saying. Or, “please put a load in the laundry so it doesn’t pile up.” Perhaps, “Can you start dinner? Make salads? Set the table?” All new language of need from yours truly.

I’ve been fortunate, in the years we’ve been together I’ve been a healthy woman -- no previous hospitalizations and no memorable cold or flu that required Tommy’s attentiveness. If there were, he evidently brought me the requested medicine, bucket, or broth, or I would have remembered his lapse. Wouldn’t I have?

I am certain that in this upcoming episode in our lives, Tommy will turn out to be caregiver extraordinaire, and soon enough he will figure out the Capezio's. Tending to his Cinderella will soon be old hat for my Prince Charming.

Tommy Untucked

“Are you sure you want me to buy these?” I asked Tommy as we stood in the candy aisle at Target. In one hand, I was holding a 10.5 ounce bag of mini Three Musketeers, Milky Ways, Trix, and Snickers;  and in the other, a 12 ounce mini Hershey’s with nuggets.

As I waited for my husband’s response, my eyes landed on his tummy, which lately, has plumped and oozed over his belt.

Ignoring my stare, Tommy answered with two thumbs up.

I persisted. “Honey,” I said. “These candies are making you gain weight.” I shook each bag for emphasis. “You’re eating too many of them.”

He continued his affirmative thumb raise.

“Okay,” I said, as I tossed the bags into the cart and rolled on.

My 77-year-old husband is dealing with a serious medical condition that has robbed him of speech and dimmed his reasoning.  How could I deny him sweets? Also, he is stubborn and likely wouldn’t listen to any lectures on wise food choices.

But, as I pushed the cart through the aisles, and Tommy headed up the escalator to savor golf equipment, I thought of the man I married 14 years ago. He was a proud 145 pounds with nary an ounce of pinch-able fat. His biceps were solid as Major League baseballs, his calf muscles impressively sloped upward, and his stomach enviously flat.

This physique was hard-won. “I was a smoker and overweight,” he had confessed in the dawning days of our romance. “My cholesterol was high and I was in lousy shape. When the doctor told me I had to change my lifestyle or I’d die, I did what he said.”

So, Tommy joined the local YMCA and became a regular. He stopped smoking, started running and bike riding, and within time, dropped weight, and lowered his blood pressure and cholesterol measures.

On top of that, four years into our marriage, he became a vegetarian and has remained meat-, chicken-, and fish-free since then. He’s judicious on portions and appears to stop when full. But, he can’t seem to resist those mini chocolates.

Throughout the day, I will see him rise from his prone position on the couch, or upon returning from a bike ride or park walk, and head for the kitchen. I’ll hear the familiar gasp of the opened freezer door, the crinkle of a plastic bag, then the slap of the sealed door. Next, the pop of the garbage can lid, the rip of foil, and the sugary symphony’s final note as the lid slams shut.

The other day, I decided if I couldn’t stop Tommy from gorging on the minis, I could do something to improve his appearance and ease.

He was on the couch flipping the remote, and as always, his t-shirt was tucked into his size 36 cargo shorts, and a black leather belt was looped and clasped in the waist band. His paunch loomed over the belt, which didn’t disguise the freed first button.

“Why not remove the belt and untuck your shirt.” I said. “You’ll be much more comfortable.”

I didn’t wait for his answer. I unhooked the belt from its notch and wrenched it out like a whip. Then, I wrestled his Japanese Free Spirit t-shirt out of his shorts and draped it over his stomach.

“Now, stand up, Honey,” I said. “Isn’t that better?”

He rose, gave a deep breath, put two thumbs up, and did a little shimmy shake which I took as two degrees above the thumb raise.

 “You look nicer, too,” I said. “Slimmer.”

He grinned and did one more dance before returning to the couch and MeTV.

Now that he’s untucked, and his belly is hard to spot, I ignore his jaunts to the freezer.  Let him enjoy. There’s always 38’s, elastic waist bands, sweat pants, and other wardrobe fixes that will allow my husband to expand. 

At his next exam, when his cholesterol and blood pressure are checked, it will be up to his doctor to learn if the levels rose, and perhaps issue a warning. But since she knows Tommy’s diagnosis, and is aware of his losses and day-to-day struggles, I suspect her prescription will be similar to mine: “Enjoy,” she’ll say.

And, he will.

Better Late Than Never

When Tommy returned from his trip to Walgreens, he was  carrying a plastic bag that appeared to contain more than the Triple A batteries he had gone to purchase. From the square shape of the box within, I thought it to be golf balls.

“What did you get?” I asked. I was teasing, for no matter how many dozens he has stored on basement shelves, I don’t mind him adding to his collection.

My husband smiled and entered the house, leaving me on the porch where I had stationed myself to enjoy a beautiful Saturday afternoon. But after spilling coffee on a garden chair, I left my spot to get clean-up equipment.

I spotted the square box on the kitchen counter. Instead of a package of golf balls as I had guessed, the box was yellow trimmed in gold and decorated with the familiar red flowers, green border, and the words “Whitman's Milk Chocolates Sampler” in green script. A yellow envelope addressed to me was laid next to it. I opened the card that read, “Happy Birthday from the Group!”

“Thank you, Sweetheart!” I called out as I searched for Tommy. I found him installing the new batteries into his headphones, and acting as if there was no surprise waiting for me. 

“I love the card and the chocolates!” I said as I pulled him from his task.

My husband’s eyes moistened. He placed the Triple A’s and headphones on the counter and bent down to accept my kiss. Then, he picked up his equipment and returned, smiling, to finish his job.

Although my birthday was the previous week, and “from the Group” was a bit off base, I was thrilled to receive both the card and the gift. Tommy had remembered after all. I know he chose this particular card, rather than a more appropriate, “To My Wife,” because at Walgreens he didn’t have with him his reading glasses, and this card’s “Happy Birthday” was large, colorful, and easy-to-spot. He didn’t sign it, but no matter. I knew the identity of my my gift giver.

On August 10, the morning of my actual birthday, when the kitchen counter was vacant of card or chocolates, I wasn’t hurt or angry. I knew if my husband could have pulled it together, he would have. On past birthdays, I could count on a sentimental “To My Wife” card and bouquet of flowers greeting me in the morning. But since Tommy no longer drives, I realized that would have been difficult.

I’m certain he knew the actual date because phone calls wishing me "Happy Birthday" started early that morning and cards that arrived in the mail were displayed on our dining room table, along with a basket of treats my daughters had sent.

Because I thought his lapse on my special day was due to his inability to purchase something on his own, I had an idea. When his Friday driver, Stuart, came to pick up Tommy, I made this suggestion: “There’s a Hallmark’s next to the coffee shop where you get Tommy,” I said. “Tell him you saw on Facebook that it was my birthday and would he like to stop in and get a card.”

“No problem,” Stuart said. But when the two arrived home and my husband led the way inside with only his gym bag, I looked at Stuart for clues. “I asked him,” he whispered to me, “but he made it clear he wanted to go straight home.”

Since Walgreens is only a block from our house and Tommy’s language problems don’t prevent him from making an off the shelf purchase, he could have bought the card and chocolates on my actual birthday. And Stuart did give him the option to buy something that same day. My husband chose neither.

I have a theory as to why he picked today -- eight days after the fact. I believe he wanted to separate himself from the crowd -- make his gift and card more special than the rest. He wanted to let me know he cared more for me than anyone else, more than the first-thing-in-the-morning well wishers or card and gift senders. 

Anyway, that’s what I think. It doesn’t really matter. The greeting card “From the Group” is propped on its own on the dining room table, and every bite of candy feels like love.

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. 

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. 




 

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.

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.

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.

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.  

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.

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?

Unpacking

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.

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.

The Artist Prefers to Work Alone

“What about here?” I am holding Tommy’s latest Paint By Number in my hands and stretching to reach a spot on the kitchen wall above the TV.

My husband raises two thumbs up, his catch-all for yes, okay, great, and perfect. We agree, “The “Ice Cardinal,” a painting of a red bird, white and blue tree limbs, framed in black metal, will look great in this spot.

From a distance, the painting looks colorful, novel. Close inspection reveals this effort -- Tommy’s latest -- does not match the perfection of the 15 other Paint By Numbers he has completed over the years.

No matter. I’m impressed with “The Ice Cardinal,” because I had thought his Paint By Number days were over. My husband’s condition, Primary progressive aphasia, a degeneration of the frontal lobe of the brain, has erased most of his speech and chipped away at concentration.

Once an avid reader of Ruth Rendell mysteries, Tommy left the last book untouched on the coffee table. Crossword puzzles no longer are attempted. And, an older Paint By Number had stood unfinished on its easel.

A few weeks ago, I thought of a way to help my husband restart that abandoned artwork. Without asking Tommy, I arranged a visit from an art therapist.

Their first session together appeared successful. Tommy, on a post-it note to the therapist, was able to admit his stalled painting was “a mess.” I envied her ease in getting my husband to confess this feeling, for he never revealed it to me. And, fearing it was due to his handicap, I never asked.

I envisioned a long relationship, teacher and student, using creativity to compensate for losses. “The mess” was tossed out, and in time for lesson number two, I bought a new Paint By Number, “The Ice Cardinal.”

On the morning of the second session, I opened the door to the art therapist. My husband lay prone on his couch, as if he were a corpse. She took a seat on the couch opposite him, pulled out a notebook, and began to ask questions that would lead to a plan for ongoing sessions. Looking at Tommy’s body language, I suspected she, and I, were in for disappointment.

She soldiered on, and when my husband didn’t show any reaction, closed her notebook and walked upstairs to the the spare bedroom turned studio. Tommy rose and followed. In less than a half hour, they were back downstairs. The art therapist gathered her purse and coat, Tommy headed back to the couch.

“See you next week,” I said, as I closed the door behind her. I looked at my husband, motionless on the couch and doubted my words.

Tommy’s arms were folded across his body. “How was your lesson?” I asked. No response. “Do you want to continue?”

Arms unfolded, two thumbs down.

“Not even one more try?”

He repeated the gesture.

“Okay,” I sighed.

I called her and said, “It’s not you, it’s me. I was overly ambitious. Tommy just isn’t into art therapy.”

“Perhaps an hour?” she said. “We were too rushed.”

“No, one of the affects of his illness is impatience.” What I didn’t add was, “especially for art therapy that wasn’t his idea in the first place.”

I’m not sure why Tommy gave up on the painting he had labelled “a mess.” And, he can’t explain why he rejected the art therapist. Or why, after she left the house, he rose from the couch, and went back upstairs to work on “The Ice Cardinal.” Alone.

Perhaps my husband was saying he didn’t want his wife to try and light his path with her bright ideas. And, he didn’t want a therapist to assist, no matter her expertise.

When Tommy was first doing Paint By Numbers, he likely enjoyed it because it was something he could do by himself, on his own schedule. As the degeneration progressed, perhaps he became frustrated when the last painting didn’t compare to earlier ones.

So, maybe it was stubbornness that pushed Tommy back to the easel. He would show us. “The Ice Cardinal,” which he completed a bit at a time, has found its place on the kitchen wall. Soon, we’ll have to scout a location for “Goldfinches,” his current Paint By Number.

Every night now, while Tommy is downstairs on his couch, in his prone position watching television and flipping channels, I slip upstairs to his studio and peek at this painting’s progress. From the doorway, I see the beginning of a yellow bird, green leaves, blue sky. No need for closer inspection. I raise two thumbs up, and retreat.

Now, May I Shoot the Messenger?

Early in 2009, I wanted to write a novel. The plot was outlined in my head: A woman, unhappy in her marriage, would abandon her husband and run away to New York.

At the time, my imaginary plot mirrored my life. I fantasized about leaving a note for Tommy, telling him I’d get in touch when settled. I didn’t think he would care.

I never did write the novel, nor run away. Instead, I made an appointment with my therapist.

“My husband is a jerk,” I told Sarah. “When we first married, he’d write me love letters, hide post-it notes with ‘love you wifey’ in my gym bag. Now, nothing.”

Sarah sat across from me in her small office. I sank into the cushions of her couch, and into my own self-pity, as I had done in other sad, or puzzling times in my life.

“He doesn’t care about me,” I whined. “He never asks about my day. I'll say, ‘how was the Y? How was golf?’ But me? It’s like I don’t exist.”

I continued, “And he bursts out with these stupid comments. He shouts at the television set. ‘You’re an actor,’ he’ll say to a commercial. ‘You’re fat!’ he throws at Oprah.’ I’ve tried to reason with him, but it’s no use, he just repeats the same dumb thing the next time a housewife selling soap or Oprah appears on the screen.”

Sarah listened. She didn’t nod, pitying my plight. She didn't agree my husband was a jerk. She didn’t encourage my escape. “Do you want to live alone?” she asked.

I pictured Tommy on his own. He’d probably survive. Before we married in 1998, he’d been a bachelor for 15 years. He knew how to cook, clean, take care of himself. But I couldn’t stand being alone. After my first husband walked out of our 30-year marriage, all I wanted was to be part of a couple again.

Sarah questioned lingered. I thought about the early years of my marriage to Tommy. Our compatibility, our comfortable evenings at home -- my husband on the couch working on the crossword puzzle, me opposite reading a newspaper. We were happy together.

“No,” I told Sarah, as I reached for the box of Kleenex. “I don’t want to live alone.”

As my sessions with Sarah continued, something was happening with Tommy. He was having trouble speaking. I asked him if he saw the words in his head. He nodded. “But you can’t get them out of your mouth?” Another yes. He could start the crossword puzzle, but could not finish it. Some people thought his garbled language meant he was drunk.

“Perhaps he should see a neurologist,” Sarah said, when I described his latest behavior.

His internist agreed. Over several months late in 2009, Tommy had blood tests, an EEG, a neuropsychometric test, and a brain SPECT scan.

“Don’t shoot the messenger,” was how the neurologist put it. He turned to me, as if Tommy was already unable to understand what was coming. “I suspect your husband has Primary progressive aphasia. It’s a dementia that affects the frontal lobe, the brain’s language center. There is no cure and the experimental drugs can cause hallucinations or other side affects."

He went on talking, about follow-up visits for Tommy, a support group for me. We rose from our chairs and left the office, hand in hand. As we walked to the subway, I turned to Tommy and asked, “Are you okay?”

“I don’t have dementia,” he said. “I know, honey, I know,” I said, squeezing his hand.

As soon as we arrived home, I looked up the symptoms associated with the illness. They matched every complaint I had unleashed in Sarah's office, plus some I had never got around to disclosing. I learned it typically started early, often in one’s 60’s, and was slow moving. Tommy must have had it for years before the speech problems surfaced.

Once I knew the diagnosis and symptoms, my anger towards my husband evaporated. I no longer wanted to write the novel, or run away. I ended therapy. I understood my husband was not responsible for his behavior. He could do nothing to stop his actions. I became empathetic and compassionate.

Today, three years after the diagnosis, Tommy can barely speak. Primary progressive aphasia has completed its task. Post-it notes once holding sentiments of love, are now used for clues when I get stumped. I value these written words as much as I did the love notes.

Our marriage is happy and as companionable as his illness allows. Today, when we watch television together, on couches that face each other, my husband no longer yells at the commercials, or at Oprah.

Strongman

Tommy can bench press his own weight. He’s been a member of the Lakeview YMCA for 40 years -- showing up every Monday, Wednesday, and Friday. At first, he was in the 6:00 p.m. crowd, then after retiring, 9:00 in the morning. I credit my 76-year-old husband’s great physical shape to this dedication.

On one recent morning, I was leading the way through the kitchen to the garage to drive Tommy to the Y. He was following behind, zipping his coat, donning his knit cap with the Bears logo, and hoisting a gym bag to his shoulder. As I passed the counter where he stows his eyeglasses and cellphone, I noticed something was missing.

“Honey,” I said, turning to catch my husband’s attention. “Where’s the medical ID band I bought for you?”

Tommy has Primary Progressive Aphasia, a condition that affects the brain’s language center. It has left him barely able to speak. The band’s metal plate is engraved with my husband’s name, his illness, and my cell phone number.

He was diagnosed in 2009, but it wasn’t until a few weeks ago his illness caused a panic: Tommy got lost on a trip downtown. I was able to rescue him because he handed his cellphone to someone who told me where he was. I realized then, to keep my husband safe, he’d need to wear a medical ID bracelet.

I wanted Tommy to wear the band everywhere, including the Y. Although he has been a regular for so many years, there’s no guarantee he’d be known. Employees leave, members drop out, and his speech problems make it unlikely he’s met new people. My worst scenario: Tommy injured, unable to say his name or mine. A crowd coming to his rescue. “I think his name is Bill,” someone says. “But I have no idea his last name.”

Now the band with his name, the diagnosis, and my phone number, was missing. I didn’t see it on his wrist. It was not on the counter where his other accessories awaited him.

“Where’s the band?” I asked again.

Tommy pointed to the front hallway. I reversed directions and headed for the straw basket that sits under the table. That’s where we toss advertising flyers and unwanted mail.

“Did you throw it out?” I asked.

Another “no.” He opened one of the table’s drawers and pointed to the medical ID band stuffed inside.

“Honey,” I said, “you have to wear this.” I retrieved the band from where it mingled with extra keys, a rack-like tool we use to groom the dog, tubes of Chapstick, abandoned sunglasses, and other detritus.

I handed the band to Tommy and we continued our exit to the door. Once seated in the car, I turned to him in the passenger seat. “Is it uncomfortable?” I asked. “Is that why you don’t want to wear it?” He nodded “yes.”

“Well, only wear it when you leave the house,” I said.

The next morning, Tommy’s reading glasses and cellphone were in their usual place, but no medical ID band. He hadn’t worn it to bed. It wasn’t on his bedside table, nor in the bathroom. I searched the hallway table drawer. I searched the kitchen. I found the band on the counter, hidden behind a giant-sized jar of dog vitamins.

I didn’t ask Tommy why he refuses to wear the band to the Y. I think I’ve figured it out. The gym is his sanctuary, free of a hovering wife. It is the place where he doesn’t have to talk, where he is proud of his three times a week attendance, and routine of 33 minutes on the elliptical, then 20 minutes of weight lifting. At the Y, he is a strongman, not someone needing a medical ID bracelet.

Later that day I called the executive director of the Y. I told her Tommy’s diagnosis. I gave her my cellphone number. “Thank you so much,” she said. “I’ll put the information in Tom’s file and make sure the staff knows who he is, and his condition. I really appreciate your sharing this.”

Tommy is strong; I’m shaping up.

Sunday Breakfast

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.