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.

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.

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.

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.