The Rookie Caregiver — Elaine Soloway

PPA

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.

Do You Have A Visual?

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

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

“Me neither,” she said.

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

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

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

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

“Nope,” she called back.

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

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

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

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

I, on the other hand, am often muddled.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Take Care of Yourself


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

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

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

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

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

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

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

“Okay,” he said. He looked glum.

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

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

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

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

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

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

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

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

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

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

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

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

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






Grateful He’s A Tightwad


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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