Tuesday, February 28, 2012
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.
Wednesday, February 22, 2012
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.
Tuesday, February 14, 2012
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.
Monday, February 6, 2012
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.