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

Monday, November 12, 2012

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.

Tuesday, October 30, 2012

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.

Tuesday, October 23, 2012

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.

Tuesday, September 18, 2012

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.

Tuesday, September 4, 2012

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.

Tuesday, August 21, 2012

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.

Tuesday, August 14, 2012

The Kids Are All Right

Tommy and I have just expanded our family: a boy and a girl. They arrived not as bundles from heaven, but in a Jeep and on a bicycle. In truth, they are young adult companions for my husband -- miracles of referrals rather than biology or science -- who I’ve hired to give me respite from ‘round-the-clock caregiving.

I do have flesh-and-blood daughters. But since they live on either coast, they can’t be at our beck-and-call. As for Tommy, he entered this second marriage sans children; hence my designation of this new adopted duo as “our kids.”

Before our boy Stuart came for his first assignment, I prepped my husband. Unlike the cinematic moment: “Darling, I have wonderful news. You’re going to be a father,” my revelation went something like this: “Honey,” I said, “I’ve hired a young man who will take over driving you to the Y one day a week. He’s a CNA, that’s Certified Nursing Assistant, so he can also help out when I have my hip replacement surgery.”

Well, okay, I fudged a bit. Stuart’s medical credentials are important for Tommy’s condition, but I hesitate reminding my husband of his special needs. I can take the fall  -- metaphorically of course because of the hip thing -- as I really do see our boy being helpful when I’m shouting for my crutches.

After Tommy gave the plan two thumbs up, I gave Stuart this checklist: “Before you leave the house, be sure Tommy takes his reading glasses, cellphone, gym bag, and that he’s wearing his dental bridge, baseball cap, and gym shoes.” Stuart -- using an impressive two thumbs entry -- recorded it all on his iPhone, immediately winning me over with the product and the pace.

On the morning of their first drive, I left for the health club at 6 a.m. Stuart would use his own new key to gain entry at 8:30. “Don’t text me unless there’s a problem,” I had told him. But, that didn’t keep me from checking my own iPhone at 8:30, 8:45, 9:00. Nada. I was at peace.

Tommy and Stuart were due back between 11:45 and noon. After a sublime four hours to myself, I returned home to await their arrival. At 11:40 I stationed myself at our picture window and watched as each car turned the corner into our street. At exactly 11:45, a black Jeep entered my view.

“Everything was fine,” Stuart said as Tommy walked into the house with two thumbs raised. “He was all set when I arrived, everything on the checklist completed.” I felt as proud of them as if they had just aced their ACTs.

Our girl Kristen had been engaged to be my husband’s companion one afternoon a week. Her task is to follow him as he rides his bicycle to a park about a mile away, and then circles the grounds four times before heading back home. Ever since Tommy returned from a ride with an unexplained bruise on his leg, I’ve worried about his safety.

For her first shift, Kristen rolled up to our house outfitted in a gingham summer dress over bike shorts. She wore a helmet; and slung across her body, an enormous leather purse, which I later insisted she forgo in favor of one of my archived backpacks.

I had told Tommy about Kristen’s arrival, and again employed the hip excuse. “I won’t be able to drive for at least four weeks,” I said. “Kristen can keep you company on bike rides, or use our car to take you to the putting green, golf store, or wherever you want to go.”

But I needn’t have dissembled because the moment Kristen -- who is an actress -- removed her helmet, shook out her hair, and smiled, my husband rushed to the garage to get his bike. While this duo was on their ride, I once again peeked at my iPhone willing away any text messages. Gratefully, as with her faux sibling, none arrived. And in a little over an hour from the time they left, the two returned.

“It was fine,” she said. “I followed behind him [they use sidewalks] and alerted people as we approached. We stopped for water, then headed home.”

Tommy, his face moist and smiling, gave her two thumbs up as he headed for the couch. Before she left, Kristen went to where Tommy was prone to say goodbye. Instead of shaking his hand, she dotted his damp forehead with a kiss.

Perhaps our kids are heaven-sent after all.

Tuesday, July 31, 2012

The Turn Around Tango

It’s 5:00 p.m. and the dance my husband and I perform daily -- which I have dubbed “The Turn Around Tango” -- is about to begin. Music would be nice, but our duet is staged in silence.

I’m in the kitchen preparing dinner. A pot of spaghetti is nearing its boil on the stove. I remove a colander from its place in a cabinet and set it in the sink. When the timer rings, signaling al dente, I lift the pot by its two handles and turn around to dump pasta and water into said colander. Alas, the pockmarked utensil has vanished.

In his fancy step, while my back was turned, Tommy has removed the colander from the sink, placed it back in the cabinet, and exited. He has not done this to vex me; this I know. He just can’t help it.

I remain standing -- a tricky move because I am holding the caldron with padded gloves, steam is clouding my eyeglasses, and I have nowhere to toss its contents. I hold this pose for a beat, then swivel and return the steaming pot of spaghetti to the stove.

Early on, when I first encountered my husband’s stealth move, I would try this: “Honey,” I’d say, “Please come back into the kitchen and get the colander out of the cabinet where you put it. I need to drain the spaghetti.”

Tommy would return, a contrite grin on his face, and perform his well-practiced steps. But, I no longer make that request. I have memorized my moves: button lip, pot back to stove, retrieve colander, return to sink, lift pot, dump.

Our Turn Around Tango takes place in other areas of our house and at various hours. A pantry door opened to extract garlic and Italian spices, is closed before I get out the first dash. Same for refrigerator when soy milk is used for my Cheerios. Ditto the garbage can lid I keep open while doing kitchen prep.

The reporter notebooks I use for Trader Joe’s and Target shopping lists are invariably returned to a neat stack after I have separated and laid them side-by-side for easy entries. All it takes to cue my spouse is for me to turn my back.

“Don’t you get mad?” I was asked by a friend. “Don’t you want to scream at him? Tell him to leave your stuff alone?”

I answer, “I think it helps Tommy when I remain calm.” I believe this to be true. My husband shows no rage in dealing with his illness.

To this friend, who has had her own frustration with a stubborn, aging relative, I say, “I’m a patient person. This comes naturally to me.”

But, I fear I lie. I can recall many instances when I am anything buy patient. See me drumming the table of a restaurant until the waitstaff comes for our order. That’s me at the hot dog stand, stewing, while the proprietor chats it up with the customer in the front of the line. And yes, that’s me fuming in any and all medical offices while waiting for my name to be called.

So, how am I able to remain saintly with my husband? What good would it do to seethe or explode? His condition prevents him from veering from his compulsive, neat-making routine. The pattern of his dance steps is imprinted on his brain; he cannot do otherwise.

As for me -- petite and compact -- I’m quick on my feet. Over the years, I’ve been able to practice my moves. Sometimes, I stumble if the steps are too difficult. Often, I wish I could get one maneuver down perfectly before another is introduced into our lives.

Thus far, I’ve kept up with my creative dance partner. The trick is to let him lead.

Tuesday, July 24, 2012

When the Caregiver Needs Care

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, July 17, 2012

Crime Scene Investigation Chicago

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, July 9, 2012


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Tuesday, June 26, 2012

All For One, One For All

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, June 18, 2012

Tools Shed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, June 5, 2012

The Screening Room

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

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

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

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

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

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

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

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

“Good,” she says.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Tuesday, May 29, 2012

Green Thumb

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Produce would be nice, too.

Tuesday, May 22, 2012

Do You Have A Visual?

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

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

“Me neither,” she said.

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

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

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

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

“Nope,” she called back.

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

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

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

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

I, on the other hand, am often muddled.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, May 15, 2012

Take Care of Yourself

It’s 8:45 in the morning and I’m at the living room window watching my husband enter the passenger side of a car that is not mine.

The driver is an attractive young woman. In some other scenario, I’d be the jealous wife, tearful at Tommy’s choice of a new companion. But since this is my life, and the driver is my aide, my feelings are of relief, not wrath.

Hiring someone to spell me from full-time chauffeuring was sparked some months ago by directives from friends and relatives. “Be sure to take care of yourself,” they had said when they learned of my full-time responsibilities. Primary progressive aphasia, a brain degeneration that has shattered my husband's speech, has also changed me into his interpreter, advocate, and guardian.

To be honest, when I first heard that “take care of yourself” advice, I thought, easy for you to say.  That sounds petulant, I know, but I wondered how I could do that with my home and work responsibilities, our budget, and my stubborn spouse.

Then, I had a second thought: I deserve it. So, I decided if I could be untethered from driving, let’s say, by arranging a substitute for the three days I ferry my husband back and forth to the YMCA, I could count that as fulfilling my loved ones’ order.

I went online and booked a taxi that would pick up Tommy at 8:45 in the morning on Mondays, Wednesdays, and Fridays, and drop him at the Y at 9. Then return at 11:45 to get him from the coffee shop around the corner of the Y. I arranged a month of these round trips.

“Honey,” I said on that day before my first day of Taking Care of Myself, “I’m going to a spa early tomorrow.  A taxi will be outside at 8:45 to drive you to the Y. Be sure to be downstairs.”

“Okay,” he said. He looked glum.

The next day I left the house early. Tommy was still asleep awaiting his own alarm. Off to the spa I went. First a massage, than to my locker to change for more pampering. As soon as I twirled the combination lock, I heard my iPhone ringing. This was not a welcome sound.

“Come home!” Tommy struggled to get out. (He still had words back then.) I looked at my watch, it was 9:15.

“Honey, what are you doing home?” I said. “Didn’t the cab arrive to get you?”

“Come home!” he repeated. “The cab left!”  This is what I figured: the cab arrived at 8:45 as ordered; Tommy was slow getting downstairs. The driver may have phoned the house, but Tommy didn’t pick up. The driver left.

“I’ll be there as fast as I can,” I said. As I raced past the receptionist, I tossed, “cancel my next appointment.”

“No cabs!” Tommy said as soon as I walked in the door.

“No, no more cabs,” I said. I went online and deleted the remainder of the taxi drives.

I returned to full-time chauffeuring until recently when I decided to try again. But, not with a cabbie.  And this time, I was less ambitious and sought only one day off, not three.

The job description I dictated to everyone I knew went something like this: Wanted, male or female to spell me one day per week. Own auto essential. Medical background a plus. Patience a must.

Enter the attractive young woman who met all my requirements. When I first introduced this new chauffeur to my husband, he gave her two thumbs up.

Today, with Tommy's comely driver at the wheel, I've elected to use my three hours to stay home. I will not shower, nor put on make-up. I will dress in sweats, sans underwear. I will not leave the house or get into a car. I will not drive back and forth, back and forth. I will not watch over anyone but me, and the dog.

That's Step One in Taking Care of Myself. For Step Two, I will go back online and schedule a taxi cab to pick me up on a day my husband will be tucked in for a long morning nap.

I will be downstairs on time and give the cabbie -- who is a driver that is not me -- the address of the spa I had abandoned all those months ago. I will head to the receptionist's desk and once again book a massage, a manicure, and a pedicure. And as I luxuriate, I will pray that my iPhone keeps her mouth shut.

Tuesday, May 8, 2012

Grateful He’s A Tightwad

I’m in the audience of a medical conference on Frontotemporal degeneration (FTD) and Primary Progressive Aphasia (PPA), little-known illnesses to most, sadly familiar to me. The auditorium is filled with caregivers, and members of the healthcare field.

Every since my husband was diagnosed in 2009, I’ve become well-versed on the PPA version of the condition. But I figure there’s always more to learn, so here I sit hoping to catch news of some miracle cure.

I listen to speaker after speaker. Yes, awareness is building. Yes, research continues. But, no, no hope yet for reversal of Tommy’s loss of speech. I slump in my seat, discouraged.

A speaker steps on stage to introduce the topic of bvFTD. My attention sharpens; this version is new to me. I learn that the “bv” that precedes FTD stands for “behavior variant.” Those burdened with those added initials, “can experience excessive spending with a lack of awareness of its implications,” she says.

Then, hands are raised in the audience, microphones are passed, and the horror stories begin -- of loved ones’ shoplifting, impulsive buying, and falling prey to Internet swindlers.

“I came home and there was a boat in my driveway,” says one caregiver who has risen to her feet.

The microphone goes to a man who volunteers, “She bought a new car, never discussed it with me.”

I overhear a woman seated in my row who says to someone on her right, “My husband sent money to Nigerian scammers, and when I stopped it, they started harassing me.”

And there was more: sweepstakes, mail orders, contests, door-to-door salespeople, lotteries; all spilled out as examples of bvFTD misery.

“My God,” I say too loudly. To myself, I think, even if my husband could still talk, or use computers, he’d never get bvFTD because he’s a tightwad.

As I lean back in the cushioned seat, I recall a scene that supports my logic.

“I like it,” Tommy had said as he stared at the new Timex I fastened on his wrist.

“You do?” I said. I stood back, hands on hips, and studied him as he twisted it upright so its white face was easily visible.

I was pleased at my husband’s reaction because this watch, which I had purchased at Nordstrom’s for $65, replaced the Pulsar he had worn for 40 years.

Throughout our marriage, I tried to get Tommy to give up that elderly timepiece. But, he always insisted on new batteries or fresh bands to keep it alive.

“Nope, this is dead,” was the last repairer’s diagnosis. 

“Please let me buy you another,” I had said to Tommy. “I promise not to spend a lot.”

The Pulsar wasn’t the only long-held possession I’ve attempted to pry from my husband’s hands, and replace with a newer version. I’m still unsuccessful with his balding brown leather wallet.

“Look, Honey,” I say whenever we pass a display of billfolds. “This looks just like your old one. It’s not expensive. How about it?”

He’ll shake his head “no,” put a hand on his pants’ leg to verify I haven’t pick-pocketed it, and pull my elbow to move me along.

Naturally, our differing views on spending money showed up early in our marriage. Although Tommy and I both grew up in households with little cash, my father was careless with money. I caught that gene and in my marriage to my first husband, a doctor, my lineage had a field day.

As for Tommy, paychecks were parceled out for necessities. He skipped college, and went into the Air Force to help support his widowed mother.  After the military, he worked to pay rent, utilities, his YMCA membership, and to build up a small savings account. No car, no credit cards, no up-to-the-minute fashions, no travels.

When we wed, I tried to spoil him with a joint checking account, credit card, and a few doodads that I was happy to bestow on my penny-pinching husband. And while Tommy enjoyed these gifts, he never became infected with my loose-spending ways.

Now, as I sit in the auditorium, riveted by tales of depleted savings, unwanted merchandise, and giant credit card bills, I feel sympathy for those who cope with the wreckage left in bvFTD’s wake.

For myself, I admit to new gratitude. True, no miracle cure awaits my husband, But his frugality, thus far, has kept us both from drowning.

Tuesday, May 1, 2012

Learning to Un-Drive

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

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

“Do you miss driving?” 

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

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

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

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

Another head shake, “no.” 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?