*Primary Progressive Aphasia, a degeneration of the part of the brain that affects speech.
Monday, March 26, 2012
“What about here?” I am holding Tommy’s latest Paint By Number in my hands and stretching to reach a spot on the kitchen wall above the TV.
My husband raises two thumbs up, his catch-all for yes, okay, great, and perfect. We agree, “The “Ice Cardinal,” a painting of a red bird, white and blue tree limbs, framed in black metal, will look great in this spot.
From a distance, the painting looks colorful, novel. Close inspection reveals this effort -- Tommy’s latest -- does not match the perfection of the 15 other Paint By Numbers he has completed over the years.
No matter. I’m impressed with “The Ice Cardinal,” because I had thought his Paint By Number days were over. My husband’s condition, Primary progressive aphasia, a degeneration of the frontal lobe of the brain, has erased most of his speech and chipped away at concentration.
Once an avid reader of Ruth Rendell mysteries, Tommy left the last book untouched on the coffee table. Crossword puzzles no longer are attempted. And, an older Paint By Number had stood unfinished on its easel.
A few weeks ago, I thought of a way to help my husband restart that abandoned artwork. Without asking Tommy, I arranged a visit from an art therapist.
Their first session together appeared successful. Tommy, on a post-it note to the therapist, was able to admit his stalled painting was “a mess.” I envied her ease in getting my husband to confess this feeling, for he never revealed it to me. And, fearing it was due to his handicap, I never asked.
I envisioned a long relationship, teacher and student, using creativity to compensate for losses. “The mess” was tossed out, and in time for lesson number two, I bought a new Paint By Number, “The Ice Cardinal.”
On the morning of the second session, I opened the door to the art therapist. My husband lay prone on his couch, as if he were a corpse. She took a seat on the couch opposite him, pulled out a notebook, and began to ask questions that would lead to a plan for ongoing sessions. Looking at Tommy’s body language, I suspected she, and I, were in for disappointment.
She soldiered on, and when my husband didn’t show any reaction, closed her notebook and walked upstairs to the the spare bedroom turned studio. Tommy rose and followed. In less than a half hour, they were back downstairs. The art therapist gathered her purse and coat, Tommy headed back to the couch.
“See you next week,” I said, as I closed the door behind her. I looked at my husband, motionless on the couch and doubted my words.
Tommy’s arms were folded across his body. “How was your lesson?” I asked. No response. “Do you want to continue?”
Arms unfolded, two thumbs down.
“Not even one more try?”
He repeated the gesture.
“Okay,” I sighed.
I called her and said, “It’s not you, it’s me. I was overly ambitious. Tommy just isn’t into art therapy.”
“Perhaps an hour?” she said. “We were too rushed.”
“No, one of the affects of his illness is impatience.” What I didn’t add was, “especially for art therapy that wasn’t his idea in the first place.”
I’m not sure why Tommy gave up on the painting he had labelled “a mess.” And, he can’t explain why he rejected the art therapist. Or why, after she left the house, he rose from the couch, and went back upstairs to work on “The Ice Cardinal.” Alone.
Perhaps my husband was saying he didn’t want his wife to try and light his path with her bright ideas. And, he didn’t want a therapist to assist, no matter her expertise.
When Tommy was first doing Paint By Numbers, he likely enjoyed it because it was something he could do by himself, on his own schedule. As the degeneration progressed, perhaps he became frustrated when the last painting didn’t compare to earlier ones.
So, maybe it was stubbornness that pushed Tommy back to the easel. He would show us. “The Ice Cardinal,” which he completed a bit at a time, has found its place on the kitchen wall. Soon, we’ll have to scout a location for “Goldfinches,” his current Paint By Number.
Every night now, while Tommy is downstairs on his couch, in his prone position watching television and flipping channels, I slip upstairs to his studio and peek at this painting’s progress. From the doorway, I see the beginning of a yellow bird, green leaves, blue sky. No need for closer inspection. I raise two thumbs up, and retreat.
Monday, March 19, 2012
Early in 2009, I wanted to write a novel. The plot was outlined in my head: A woman, unhappy in her marriage, would abandon her husband and run away to New York.
At the time, my imaginary plot mirrored my life. I fantasized about leaving a note for Tommy, telling him I’d get in touch when settled. I didn’t think he would care.
I never did write the novel, nor run away. Instead, I made an appointment with my therapist.
“My husband is a jerk,” I told Sarah. “When we first married, he’d write me love letters, hide post-it notes with ‘love you wifey’ in my gym bag. Now, nothing.”
Sarah sat across from me in her small office. I sank into the cushions of her couch, and into my own self-pity, as I had done in other sad, or puzzling times in my life.
“He doesn’t care about me,” I whined. “He never asks about my day. I'll say, ‘how was the Y? How was golf?’ But me? It’s like I don’t exist.”
I continued, “And he bursts out with these stupid comments. He shouts at the television set. ‘You’re an actor,’ he’ll say to a commercial. ‘You’re fat!’ he throws at Oprah.’ I’ve tried to reason with him, but it’s no use, he just repeats the same dumb thing the next time a housewife selling soap or Oprah appears on the screen.”
Sarah listened. She didn’t nod, pitying my plight. She didn't agree my husband was a jerk. She didn’t encourage my escape. “Do you want to live alone?” she asked.
I pictured Tommy on his own. He’d probably survive. Before we married in 1998, he’d been a bachelor for 15 years. He knew how to cook, clean, take care of himself. But I couldn’t stand being alone. After my first husband walked out of our 30-year marriage, all I wanted was to be part of a couple again.
Sarah questioned lingered. I thought about the early years of my marriage to Tommy. Our compatibility, our comfortable evenings at home -- my husband on the couch working on the crossword puzzle, me opposite reading a newspaper. We were happy together.
“No,” I told Sarah, as I reached for the box of Kleenex. “I don’t want to live alone.”
As my sessions with Sarah continued, something was happening with Tommy. He was having trouble speaking. I asked him if he saw the words in his head. He nodded. “But you can’t get them out of your mouth?” Another yes. He could start the crossword puzzle, but could not finish it. Some people thought his garbled language meant he was drunk.
“Perhaps he should see a neurologist,” Sarah said, when I described his latest behavior.
His internist agreed. Over several months late in 2009, Tommy had blood tests, an EEG, a neuropsychometric test, and a brain SPECT scan.
“Don’t shoot the messenger,” was how the neurologist put it. He turned to me, as if Tommy was already unable to understand what was coming. “I suspect your husband has Primary progressive aphasia. It’s a dementia that affects the frontal lobe, the brain’s language center. There is no cure and the experimental drugs can cause hallucinations or other side affects."
He went on talking, about follow-up visits for Tommy, a support group for me. We rose from our chairs and left the office, hand in hand. As we walked to the subway, I turned to Tommy and asked, “Are you okay?”
“I don’t have dementia,” he said. “I know, honey, I know,” I said, squeezing his hand.
As soon as we arrived home, I looked up the symptoms associated with the illness. They matched every complaint I had unleashed in Sarah's office, plus some I had never got around to disclosing. I learned it typically started early, often in one’s 60’s, and was slow moving. Tommy must have had it for years before the speech problems surfaced.
Once I knew the diagnosis and symptoms, my anger towards my husband evaporated. I no longer wanted to write the novel, or run away. I ended therapy. I understood my husband was not responsible for his behavior. He could do nothing to stop his actions. I became empathetic and compassionate.
Today, three years after the diagnosis, Tommy can barely speak. Primary progressive aphasia has completed its task. Post-it notes once holding sentiments of love, are now used for clues when I get stumped. I value these written words as much as I did the love notes.
Our marriage is happy and as companionable as his illness allows. Today, when we watch television together, on couches that face each other, my husband no longer yells at the commercials, or at Oprah.
Tuesday, March 13, 2012
Tommy can bench press his own weight. He’s been a member of the Lakeview YMCA for 40 years -- showing up every Monday, Wednesday, and Friday. At first, he was in the 6:00 p.m. crowd, then after retiring, 9:00 in the morning. I credit my 76-year-old husband’s great physical shape to this dedication.
On one recent morning, I was leading the way through the kitchen to the garage to drive Tommy to the Y. He was following behind, zipping his coat, donning his knit cap with the Bears logo, and hoisting a gym bag to his shoulder. As I passed the counter where he stows his eyeglasses and cellphone, I noticed something was missing.
“Honey,” I said, turning to catch my husband’s attention. “Where’s the medical ID band I bought for you?”
Tommy has Primary Progressive Aphasia, a condition that affects the brain’s language center. It has left him barely able to speak. The band’s metal plate is engraved with my husband’s name, his illness, and my cell phone number.
He was diagnosed in 2009, but it wasn’t until a few weeks ago his illness caused a panic: Tommy got lost on a trip downtown. I was able to rescue him because he handed his cellphone to someone who told me where he was. I realized then, to keep my husband safe, he’d need to wear a medical ID bracelet.
I wanted Tommy to wear the band everywhere, including the Y. Although he has been a regular for so many years, there’s no guarantee he’d be known. Employees leave, members drop out, and his speech problems make it unlikely he’s met new people. My worst scenario: Tommy injured, unable to say his name or mine. A crowd coming to his rescue. “I think his name is Bill,” someone says. “But I have no idea his last name.”
Now the band with his name, the diagnosis, and my phone number, was missing. I didn’t see it on his wrist. It was not on the counter where his other accessories awaited him.
“Where’s the band?” I asked again.
Tommy pointed to the front hallway. I reversed directions and headed for the straw basket that sits under the table. That’s where we toss advertising flyers and unwanted mail.
“Did you throw it out?” I asked.
Another “no.” He opened one of the table’s drawers and pointed to the medical ID band stuffed inside.
“Honey,” I said, “you have to wear this.” I retrieved the band from where it mingled with extra keys, a rack-like tool we use to groom the dog, tubes of Chapstick, abandoned sunglasses, and other detritus.
I handed the band to Tommy and we continued our exit to the door. Once seated in the car, I turned to him in the passenger seat. “Is it uncomfortable?” I asked. “Is that why you don’t want to wear it?” He nodded “yes.”
“Well, only wear it when you leave the house,” I said.
The next morning, Tommy’s reading glasses and cellphone were in their usual place, but no medical ID band. He hadn’t worn it to bed. It wasn’t on his bedside table, nor in the bathroom. I searched the hallway table drawer. I searched the kitchen. I found the band on the counter, hidden behind a giant-sized jar of dog vitamins.
I didn’t ask Tommy why he refuses to wear the band to the Y. I think I’ve figured it out. The gym is his sanctuary, free of a hovering wife. It is the place where he doesn’t have to talk, where he is proud of his three times a week attendance, and routine of 33 minutes on the elliptical, then 20 minutes of weight lifting. At the Y, he is a strongman, not someone needing a medical ID bracelet.
Later that day I called the executive director of the Y. I told her Tommy’s diagnosis. I gave her my cellphone number. “Thank you so much,” she said. “I’ll put the information in Tom’s file and make sure the staff knows who he is, and his condition. I really appreciate your sharing this.”
Tommy is strong; I’m shaping up.
Monday, March 5, 2012
Our booth at Dappers is all set with napkins and silverware, catsup and hot sauce, and miniature capsules of flavored creams that my husband Tommy likes for his morning coffee. Linda, our favorite waitress, has taken care of this.
As we approach the setting, Tommy gives my shoulder a squeeze. It is a love tap, I know. We remove our jackets and caps and toss them in a corner of our benches. I extract Tommy’s reading glasses from my tote bag while he parcels out the Sunday paper. Once settled, Linda approaches with her order pad and pencil.
Every Sunday morning, since we first met in 1996, Tommy and I have eaten breakfasts out. We are creatures of habit. We like predictability. We are not the sort who seek out the latest place. Routine makes us comfortable, like a pair of favored slippers.
The Lakeview Restaurant on Ashland Ave. in Chicago, was the first diner we went to as a couple. Tommy, who had lived in the neighborhood for at least 20 years, was a regular. Before I entered the picture, he would sit alone at the counter reading a paperback until one of his cronies would take the stool next to him.
When Tommy first brought me to the Lakeview, he held my hand as he introduced me to his waitress. “This is Elaine,” he said, loud enough for the other customers to hear. He tightened his grip on my hand, as if he feared I would get away.
Two years later, he held both our hands aloft to show our wedding rings. “My wife,” he said. The other diners turned their heads to learn the source of the jubilant voice.
I can’t remember the name of our Lakeview waitress, but Tommy likely could. Although he was diagnosed with Primary Progressive Aphasia in 2009, a dementia that robs the victim of speech, the disease left his memory intact.
Soon after we married, something stirred me to shake predictability and prove I could surprise. After living in the city all my life, I convinced Tommy we should move to a small town. Although my husband was content where we lived in Chicago, he wanted to keep his dopey-dreaming wife happy. So, he helped pack.
We found the Geneva Diner in the small town 40 miles west of Chicago. Every Sunday morning, we’d settle into our regular booth, and chat up the college student who was our waitress. But the regularity of Sunday breakfast in this bucolic spot -- where there were only a handful of Jews (like me) and even fewer Democrats (like both of us) -- couldn’t make up for my feeling I had made a giant mistake.Exactly one year later, I dragged Tommy back to Chicago.
Once again, my husband, who had planted a vegetable garden and said he could have remained in Geneva, went along with the move. Perhaps he believed that the vow we took in 1998, “Till death do us part,” meant following his wife’s foolish whims.
We settled in the Independence Park neighborhood on the city’s northwest side. I felt free of the itch for change of scenery. I was finished with surprises. All I wanted was the familiar, the lovely predictability of everyday life.
“Do you want to see a menu, or do you know what you want?” Linda at Dapper asks. She knows we don’t want to see a menu, but never fails to give us the option. She looks to Tommy, pencil poised. She has been a witness to my husband’s steady loss of language over the past three years, but has never given a clue there is a problem.
She waits as Tommy voices something that resembles the first syllable of a breakfast dish. Dear Linda catches his choice. She doesn’t turn to me -- as some people do to decipher what Tommy is trying to say, and I’ll tell you, I don’t like it when they do that -- she just says “got it.”
When Linda leaves the table, Tommy passes to me my favorite newspaper sections. He taps my hand. I take this to mean he is happy to be engaged in this predictable, ordinary Sunday ritual. Then, we begin flipping pages and reading. With our lack of conversation, we appear to be an old married couple who disdains chat in favor of the print before us.
I wasn’t jealous when Tommy beamed as he led Julie on a tour of our house. He was showing off his paintings and smiled at her, like a teen smitten with a cheerleader.
But, later that morning, when my husband revealed something to this art therapist he had not shared with me, I felt as envious as a plain-Jane watching from the sidelines.
I had hired Julie to work with Tommy following the recommendation of the social worker at Northwestern Hospital who has been guiding me since my husband was diagnosed with Primary Progressive Aphasia, a dementia that robs the brain of language.
Julie had premature grey hair, was dressed in a black outfit accessorized with colorful scarves, and looked the part of Artist. In some ways, she resembled a younger version of me. I’d like to think that led to Tommy’s easy acceptance of her into his therapeutic life.
He had 15 Paint By Number pictures to show her. They are on walls throughout our house. All are beautiful and match the example on the cover of each kit. Over the years, as Tommy completed each painting, he’d select a frame, tuck the painting into protective glass, then hang it where it could be seen and admired.
Tommy chose Paint By Number as a winter hobby, when the weather prohibited his favorite pastime, golf. I was happy to see him engaged in something creative. To show my support, I bought an easel for the spare bedroom, a gooseneck lamp to clip to the top of the board, and a French beret to complete the picture of artist’s atelier.
For several years, Tommy finished two paintings per season. Then, last year, trouble. His work no longer matched the box’s cover. He halted this effort midway, eventually tossing it in the trash. I guessed the cruel illness that was stealing his speech was now affecting his brush strokes.
So, when Tommy wanted to try again this year, I was surprised. I helped him choose a new kit from our usual online store, and watched as he assembled the easel, attached the light, spread the baby pots of paint on a makeshift table, and started in. (The beret is long gone.) But, after a few days, he stopped. He turned off the lamp, put the brush down alongside the pots, and left the unfinished painting on the easel. Then, he closed the door to his studio.
“These are marvelous,” Julie said, as Tommy led her through the first floor and pointed to each one of his paintings. When the two of them went upstairs, I could hear her praising the works in the hall and in our bedroom. Then, I heard him open the door to the room where the abandoned painting still stood on the easel. I remained downstairs, wondering how artist and teacher would handle what they found.
Julie came down first with Tommy trailing after. “We’re dumping this,” she said, holding the painting in two fingers. My husband was nodding in agreement and grinning. “We’re going to start fresh with a new painting.” Then, she showed me what Tommy had written on a post-it note. “MESS,” it read.
Julie smiled at him as if he were already her favorite student. “Yes,” she said, “that’s what Tommy was trying to tell me upstairs. That’s why we agreed to start a new one.”
Mess? My husband had confessed to this stranger how he felt about his abandoned painting? I was jealous; the emotion absent from their first interaction now struck.
I wanted in. "Maybe it would be better to try something free form," I said. "It might be easier than Paint by Number."
"No," Julie said, looking to my husband for confirmation. "Tom likes Paint By Number, so we're going to stick with that."
Then she asked, “Tom, is the problem that the numbered places are too small, or that your brain is having a hard time getting the message to your hand?”
He shook his head at the former and nodded “yes” at the latter.
“Okay,” Julie said. “Now we know how to proceed.”
After Julie left, I thought about how she was able to get my husband to open up. Perhaps it was her training, her distance from the role of spousal caregiver, and her compassion that gave her the key.
Or, maybe it was because Julie didn’t know our backstory; that before the illness, when Tommy could talk, he was a man of a few words, never eager to discuss emotional issues. When I saw the closed door, I assumed Tommy preferred to drop the subject. And, perhaps I was relieved I didn’t have to enter this emotional territory.
That afternoon, I turned on the computer. Tommy pulled up a chair next to me. We searched the Paint By Number website. He selected “Ice Cardinal.” It’s due to arrive any day now, in time for our next Art Therapy.
In 1956, when he was 21, Tommy enlisted in in the U.S. Air Force, where he trained as a radio operator. Eventually, he rose to the rank of Corporal and was stationed in Japan until honorably discharged in 1959.
I didn’t know Tommy in his youth; we didn’t meet until 1996, and then married two years later in a Las Vegas ceremony officiated by an ecumenical minister. But, I often pictured that affable boy in those long ago days-- trim in his uniform, cap atop his military crew cut, proud to serve his country.
Those images surfaced recently when I dug through my husband’s papers to learn if he would be eligible for a U.S. Department of Veterans Affairs benefit called “Aid and Attendance.”
If he passed the test, the V.A. would pay up to $1,644 per month to hire a home health aide. The application for benefits required a copy of Tommy’s separation papers, medical evaluation from physician, and current medical issues. The Air Force papers were in my hand. His 2009 diagnosis of Primary Progress Aphasia, a form of dementia affecting the brain’s language center, was filed in the folder marked “Brain.”
For nearly a year, my daughters -- who live in Los Angeles and Boston -- had been urging me to find someone who could stay overnight with Tommy. They were disappointed that I halted my travels after I believed it was no longer safe to leave my husband home alone. I knew he could handle normal activities, but what if he had to call for help? His aphasia would have rendered him powerless in any emergency calls to 911 or neighbors.
When he was well, I travelled to either coast at least three times a year. Tommy, a stepfather who became bored at my desire to do nothing but stare at my grandchildren, or shadow my daughters, opted to stay put and housesit the dog.
While away, I would call him nightly. “Get your butt home,” he’d tease. Then, I knew all was fine. But, eventually that phrase was absent. Or, if he did manage a few words, they were dangerously frayed.
So, I saw that $1,644 monthly benefit as my salvation. That would be enough money to enlist the services of a home health agency to give me an occasional break, and to be assured Tommy would be safely tucked in his own home if I travelled to fawn over my offspring and theirs.
I studied the amount -- one thousand, six hundred, forty-four. I imagined the check directly deposited into my bank account each month. Envisioned myself handing a set of house keys to a trusted aide who would bid me goodbye with, “don’t worry about a thing. He’ll be fine.”
Then, I looked at this V.A. eligibility caveat, “Any war veteran with 90 days of active duty, 1 day beginning or ending during a period of war.”
Period of war? Quickly I searched for the descriptions. Here’s what I found of recent conflicts:
World War II. December 7, 1941, through December 31, 1946, inclusive. If the veteran was in service on December 31, 1946, continuous service before July 26, 1947, is considered World War II service.
Korean conflict. June 27, 1950, through January 31, 1955, inclusive.
Vietnam era. The period beginning on February 28, 1961, and ending on May 7, 1975, inclusive, in the case of a veteran who served in the Republic of Vietnam during that period. The period beginning on August 5, 1964, and ending on May 7, 1975, inclusive, in all other cases.
Do you see 1956-1959 in that list? Neither do I. My boyish Tommy, trim in his Air Force uniform, earnestly communicating with his static-filled radio, gung-ho in his military exercises, had served in the wrong war. There would be no $1,644 check slipping monthly into my bank account; no packing of suitcases for the coasts.
Okay, so the V.A. won’t come to my rescue. But, no retreat for this caregiving spouse. I’ll gather ammunition, devise a battle plan, and tramp ahead. Surrender isn’t an option.
In 1998, when Tommy and I got married, we went to Service Merchandise to buy matching gold wedding bands. It was the second marriage for both, we were in our 60's. I think we paid $25 for each. Fancy gems weren’t important to us back then; still aren't.
This year --2012 -- our gold rings still encircle our fingers, but we’ve added an accessory just a few inches below these symbols of our union.
We wear matching black flex bands with 2-inch-wide stainless metal plates. Engraving on the front side of Tommy’s reads, "Tom Madison, Aphasia, Chicago." On the inside, "Call Wife, Elaine Soloway," and my cell phone number.
While Tommy’s band is size 7, mine is 6. Engraved on the front side of mine is simply, "Elaine Soloway, Chicago." Thus far, I have no medical issue that requires explanation. Arthritis doesn't count, does it?
On the reverse of my band: "In Emergency, H. Soloway, MD," with my ex-husband's cell phone number. The two bands cost $46.90 including shipping and handling. Nearly the same as our gold ones.
I ordered our medical alert bracelets after Tommy got lost. “You shouldn’t let him travel alone,” a daughter had warned. But, I knew he treasured his CTA senior card, and I believed since all previous trips returned him home safely, he’d be fine. I had already taken away his car keys. I hated the idea of robbing him of one more symbol of independence.
On the afternoon Tommy got lost, he was on his way to see his speech therapist. Her office is at Michigan Ave. between Randolph and Washington in Chicago. One hour and 15 minutes after he left, the home phone rang. No one except marketers call on this line, and I’ve urged Tommy to only use my cell. But, I answered it.
Dead air. Finally, garbled words. “Honey, where are you?” I said. I held on to my desk. “Mmmm,” he got out.
“Are you in the subway?” I envisioned him in the depths, alone, scared. My grip tightened.
“Mmmm,” he repeated.
“Honey,” I pleaded. “Please find someone you can hand the phone to.”
I was grateful he carried his cell phone, grateful he could punch in the number -- even if it was the landline -- but terrified on how to find him.
Finally, a female voice. “Hi, this is Marcello’s.”
“Marcello’s on North Ave. and Halsted?” I asked.
“Tell my husband to wait there, I’m on my way.”
“Oh, he’s okay,” she said. “He just bought a slice of coffee cake.”
You know those photos of people doing super-human feats in an emergency? Wee women lifting automobiles off of trapped victims?
It was 4:30 p.m., rush hour in Chicago, and I was about to drive five miles from our house to the intersection of North Ave., Halsted St., and Clybourn Ave. -- the traffic triangle from hell. But, I was super human.
I put the leash on the dog, got in the car, and together we slogged along I90 to North Ave., then crept east to the restaurant. At every mile, I thanked God, grateful Tommy was found, grateful he was okay, grateful he ate coffee cake.
My husband was seated on a bench outside the restaurant. “How did you get here?” I asked. Before getting into the passenger seat, Tommy opened the back door and patted Buddy’s head.
The best I can figure from Tommy’s “yes” and “no” responses, is that he exited the subway at Washington and Dearborn as usual. Then, he got confused and started walking. And he walked the three miles to Marcello’s.
When the medical alert bands arrived a few days after this episode, I thought Tommy would balk at putting his on because he doesn’t like to cop to his illness. But, this time, no argument; he slipped it on.
My own medical alert band, with my ex's information was necessary because I can no longer list Tommy as emergency contact. “Do you mind?” I had asked Harry. We were married for 30 years, he knows my doctors, has our daughters’ phone numbers plugged into his cell, and with the MD after his name, I knew I’d get immediate attention. And, we are blessed with a good relationship. “No problem,” he said.
I only wear my medical alert band when I leave the house. But the gold ring hasn’t left my finger -- nor Tommy’s -- since the ecumenical minister who married us in Las Vegas encouraged their mutual exchange.
In that ceremony, as we slipped gold bands on each other's finger, we echoed the clergyman’s words. “In sickness and in health,” we vowed.
I’m on the living room couch watching the numbers on the DVR’s digital clock. It's 3:30 in the morning, and I'm praying Tommy doesn't wake up before his alarm, like he did yesterday.
It was 3:45 a.m. when he hustled out of bed and started pulling on his jeans. (This is a typical wake up time for me, so I wasn't angry, just scared.)
"Honey, it's 3:45 in the morning," I told my husband. I pulled his elbow and tried to stop him from putting his belt through the loop.
Tommy pulled away and moved to lace his tennis shoes. He didn't rebut because he can’t speak. Frontotemporal Dementia (FTD) and Primary Progressive Aphasia (PPA)-- disorders affecting the brain’s language center -- started robbing him of his speech in 2009, and like one of the "Ps" says, it's Progressive. So, over the years, there's been less and less talk, and now we're left with bits of common language from our 14 year marriage. And if we're lucky, a written note.
At least he’s safe in bed, I tell myself.
At least he’s no longer driving.
It was my neighbor across the street who called to tell me Tommy had sideswiped another car and drove off. I was waiting for this kind of call for I worried every time he got in his car. If he was late coming home from the Y, or from his golf date, I’d pace in front of the window until I saw his Honda Accord pull into the driveway.
“You have to take away the keys before he kills someone,” my daughter said when I told her of the latest incident. "You'll never forgive yourself."
So, neighbors Holly and John sat on the couch with me to tell Tommy it was no longer safe for him to drive. When he refused to give me his car keys, I said, "John will remove the battery." I got that line from one of his neurologists.
"We've got lots of kids in the neighborhood," Holly said. "You can't be driving."
"No," Tommy said. "Golf, the Y." He could get those words out.
"I'll take you," I said. "Anywhere you want to go." I do.
Yesterday, when Tommy woke at 3:45 a.m., I followed him downstairs to the living room. He settled on the couch and turned on the remote. He wrote on a Post-it, "Rock."
Aha! Tommy thought he had been taking his afternoon nap and it was time to get up and watch one of his favorite TV shows, "The Rockford Files." When I opened the curtains to show him it was still dark outside, when I went through the MeTV listings to show him there was no Rockford, when I pointed to the a.m. on the TV screen's time, he clicked the remote and went back upstairs to bed.
This morning it appears he is sleeping through.