Dignifying Dementia (19 page)

I began carrying a book with me everywhere I went.

However the next time I stayed out after 5:00 was harder; I had used up the ‘pick up Chinese take-out' solution. What could I do? I didn't need groceries or supplies. I tried going to Wendy's and could only think of all the times we had stopped for a bite at a fast food restaurant when we traveled. I'd ask, “Do you want a ‘fish something'?” And Jim would say, “Sure.” “Diet Coke?” “Fine.”

I was alone at Wendy's, ordering food I didn't care about, knowing that we would never again debate which of us would go to the ‘loo' first. And when I went to the ladies' room, I had to take my handbag with me, because Jim couldn't ‘keep an eye on it' for me. I was a wreck when I left Wendy's, but I dawdled and went home. Carrie's tests were hard because these outings weren't fun. Another time, I walked into a Cracker Barrel restaurant, and once again the guy was missing who would have studied the menu and said, “Grilled catfish with a side order of coleslaw.”

Jim was the loner, and I the gregarious member of the duo. I used to be eager and able to talk to anyone about anything. Ironically, during his illness, he was never alone and I was. Having a demented husband was not the subject of scintillating conversation. Nor was I engrossed in hearing about other people's cruises, plans to travel north or dye jobs. I was boring and had no travel plans. That I got a better price for latex-free, powder-free gloves, changed Jim at 4:30 am, rolled him to one side without hurting my back or experimented with another stool softener weren't attention-grabbers.

However, under Carrie's tutelage, I became so brave that I planned a weekend trip to New York City, but the plans fell apart when an aide's schedule changed. I was relieved; I didn't want to be out of range if he needed help. Two years later, I took the train to Washington DC. I read all the way and stayed overnight. A year later, I took another trip and went to New York to see four plays in one weekend. His absence was palpable. My biggest gamble was a trip to Portland, Oregon. By then, Jim seemed to have no sense of time, so I doubted he knew I was gone.

I was still looking for things to do, not a career. During the last three years of Jim's life, I tutored international students at the local college, wrote articles for a local magazine and a Savannah paper, and taught some English classes at the technical college. When I became involved in theatre, I hung posters. I filed paperwork for a small company. A couple of hours a week, my focus was whether invoices should be filed under “MC” or “MAC.” However, when the owner asked for my help marketing the company, I didn't have the energy for that kind of responsibility. I had had enough.

I took classes, attended meetings of the Foreign Affairs Association. I delivered Report Writing and Presentation Skills training seminars at the Marine Corps Depot at Parris Island. I proofread someone's autobiography and helped the director with the billing for the Alzheimer's group. I spoke at some caregivers' support group meetings in Beaufort and Bluffton. I went to the dentist, the post office, the pharmacy, the bank, for coffee and out to lunch. I edited online. I visited nursing homes. During the six months before he died, I gave two seminars: one in Baltimore and another at Camp Lejeune. I tried to keep busy, but it was sporadic and hollow, and I preferred to be near home.

I remained a fixture at the movies and read until the film started. If Michael Caine, Robert De Niro, Gabriel Byrne, Al Pacino, Liam Neeson, or Brendan Gleeson was on the screen, I watched watery–eyed. Why wasn't Jim sitting beside me?

After
The Magdalene Sisters
, I imagined Jim becoming misty-eyed over the images of the Irish countryside and heard him say, “I told you Ireland was a benighted country. You want to go back there?” The voice I heard was not the hoarse inaudible one he developed once he became ill.

People assumed we had intellectual discussions after movies – not so. Our reviews consisted of raised eyebrows, smiles, “Oh, well,” “Well done,” or “That was a disappointment” – like our reactions to previews: a whispered “Yes,” or thumbs up or down.

I went to chamber music concerts. I could feel Jim's warmth through his tweed jacket as my shoulder touched his, but the seat beside me was empty. As I did at the movies, I brought a book and tried to concentrate on it, rather than remember sitting together at Alice Tully Hall, or rushing for a bus on Broadway.

For a few hours every day, I didn't see him fiddling with a fold of fabric on his nightshirt, handing us ‘nothing,' or looking at the digital clock saying, “2, 2”, instead of 8:22 or 9:22. The distractions passed the time, but they did not alleviate the pain.

I had two tickets to see Hal Holbrook in
Mark Twain Tonight
. I asked a friend of a friend if he wanted to join me. He agreed, but he didn't laugh in the same places Jim would have laughed. After the show, we headed down the stairs from the mezzanine. The man on the step below me was wearing a blue, wool blazer – just like Jim's. Because I hated heights, Jim had always stepped ahead of me at the top of a steep staircase or escalator like the ones at Bloomingdale's, at Charles de Gaulle Airport or on the London Underground. He would turn, look up and say, “OK?” I caught myself wanting to reach my hand out to rest it on the shoulder of the man ahead of me in the blue blazer.

Why two tickets? It's what I had always done. I had to learn to stop buying two tickets. Would someone go with me? “Well, I'd love to, but I can't go that day.” “Gee, could you change them for …?” “When?” “Where are the seats?” It was easier to go to the theatre alone and stick my nose in my book.

And people-watching was no fun anymore, and what happened to the nod that meant, ‘It's bad; let's go.” No more requests for “Two on the outside aisle or in the front mezz, please, unless the railing is very high.”

I needed books to read; I used the library, but I had trouble going to bookstores, because I wanted to buy him the new Annie Proulx, Philip Roth, Robert Parker, John Updike, William Trevor or Booker Prize winner.

Getting through holidays was always difficult; scheduling became a nightmare because all the aides had family commitments, and it was quite simply the ‘holidays.' I learned to avoid malls. I spent one mild Thanksgiving Day reading a thriller near a hotel pool. Another Thanksgiving, I was a server at a restaurant that offered free dinners; however, it wasn't the ‘soup kitchen' I expected. We servers appeared more needy than the diners.

Around Christmas, I bumped into someone who had been a server too. He was near tears. Apparently the “love of his life” had gone on a cruise with her ex-boyfriend and he was “dog-sitting.” He asked if I knew anyone “beautiful and 40.” What was he going to do over Christmas? I told him that I was going to the Chinese restaurant and a movie, and he was welcome to join me. He jumped at the chance. I could hear my mother,” Do you pick up every stray?”

He called to confirm and said, “Wear bright colors!” What? I immediately regretted proffering the invitation; however, we met at noon at the restaurant. He told me his life story, about his ex-wife and his current love. But, unfortunately, the movie didn't start until 4:00. “How about coming over to my house for sex?” I said, “No.” I remember thinking I should have said, “No, Thank you.” Then he sweetened the deal and told me he had over 300 DVDs. We walked our separate ways.

When I got back into the car, I slammed my fists into the steering wheel. I was angry at Jim. I blamed him for this tacky moment. How could he leave me like this? If Jim had been well, then this stupid lunch wouldn't have happened. Without a doubt, Jim would have said, “You are such an innocent, what did you expect?”

Fortunately, my high school classmate was home when I phoned to wish him a Merry Christmas and to tell him what had just happened. I said, “I don't know if the guy was joking or not.” Bill said, “The goal is one pass a week, and it doesn't matter if it is a joke or not. It counts.” Thank goodness for Bill; I laughed, and I missed Jim. I counted my passes for the week when Jim said, “Hi, Sweetie,” or “What a nice surprise to see you!” Or if he pursed his lips, when I leaned down to kiss him.

Once I asked a doctor, “How can I survive this tragedy?” She said, “Think like a teenager.” I hadn't a clue what she meant, but I interpreted her remark to mean, do what you loved as a teenager, or behave as if your whole life were ahead of you.

I had always loved theatre and acting, so, when I saw a notice in the newspaper for an audition for a community show, I asked Carrie and Sylvia, “If I get a part, would I be able to go to rehearsals?” “Yes,” they said, “we will work it out.” It had been years, but I auditioned and got a part in
A Black Comedy
. Because the reviewer generously said I was the “highlight” of the production, I continued auditioning and getting parts. Carrie and Sylvia, true to their word, “worked it out.” I was in one play after another. Another kind reviewer wrote that I was an “acerbic Ouiser lovable and laughable” in
Steel Magnolias
. I had a blast as Eagle Eye Fleagle in
Li'l Abner
.

Because I had to learn my lines in the car, I preferred bit parts, so I was delighted when the local Equity theatre cast me as the crazy sister in
The Man Who Came to Dinner
and as the elegant Dolly in
Annie Get Your Gun
. I did dinner theatre at a local country club. I organized and performed in a benefit performance of
Love Letters
for the local Alzheimer's organization, and I had a role in
The Vagina Monologues
. It was fun!

Ironically, Jim had seen me deliver talks at conferences, but he had never seen me perform. I brought a program home to show him my name and picture. He looked at it, held it, put it down and applauded. Honest to God, he said, “Congratulations” and clapped his hands. However, when Sylvia played the video of
A Black Comedy
, he paid attention for only a few minutes. He said one word: “Depressing.”