Dignifying Dementia (6 page)

I couldn't deny it any longer. Something WAS very wrong with Jim. He was unable to retain information and avoided interaction with people other than me. He asked me to buy train tickets for him and to talk to the stationmaster. If we took the train together, he handed me the tickets to give to the conductor. I bought the movie tickets. I asked for programs from the ushers, for the location of the men's room. He avoided talking.

Jim was losing control and his sense of humor.

Not long after he telephoned me about the train tickets, he took a phone message at home and made an error. In all the years I had known Jim, I couldn't recall his making any error when it came to words – ever. I had turned to him for spelling corrections, for grammar, for missing antecedents and misplaced modifiers. If he was unsure, he reached for our
Oxford Dictionary
in Ireland or for
Webster's
in the United States. He was my editor. He had written the phone message on a yellow post-it. It said, “Stephen called.” As I read it, the breath went out of me. The man with the beautiful, open script had printed in large block letters, “Stephen called.” The ‘n' was backwards.

Despite his withdrawal, his ‘error' and word-finding problems, we continued our cultural spree.

One Saturday, we had tickets to a matinee at the Irish Repertory Company on 22
^nd
Street. Jim, keeper of our theatre tickets, always put each set in a separate envelope with the show, theatre, address, time and date written on the front. On the day of the performance, he would transfer the tickets from the envelope to his wallet.

When I ordered these tickets, though, I said we would pick them up at the box office. The plan was to take the train into town, have lunch at a restaurant near the theatre, see the show, visit a bookstore, of course, and return home.

As planned, we took the train into Grand Central. While neither of us was particularly fond of subways, now that I was commuting , I had become cocky and convinced Jim that it was quicker to hop on the Lexington Avenue subway, get off at 23
^rd
Street, walk west, have a leisurely lunch and take the heftier walk on our return to Grand Central after the show.

We arrived in town, walked to the subway entrance and took the escalator down to the platform. Our train was sitting in the station. I accelerated and stepped onto the car. The doors closed behind me. Jim was left standing on the platform as the train pulled out.

I pounded in vain on the doors and stood helplessly watching him through the glass. The woman beside me said, “My greatest nightmare is having the train door close before my daughter and I are both on or off the train together.” I had never thought about it. I tried to remain calm and rational. Clearly, I had less confidence in Jim's ability to problem solve. What if he didn't remember where we were going? He had no tickets in his wallet. Why had I asked the theatre to hold our tickets at the box office? Why didn't we have a contingency plan?

I got off the train at 23
^rd
Street and waited on the platform for the next southbound train. I watched the doors open, hoping I would see Jim get off the train. He didn't. The train pulled out. I waited for one more. No Jim. Then I raced upstairs to the street, hailed a cab and asked the driver to take me to Grand Central.

In the taxi, I visualized Jim walking upstairs from the subway to the information booth on the upper level. When I arrived, I paid the driver and ran from the cab into the 42
^nd
Street entrance of Grand Central to retrace our steps. He wasn't at the information booth. I rushed back down to the subway platform. He wasn't there either, so I went back up to the information booth and asked to have him paged. They did. I waited. He didn't answer the page.

I replayed our conversation about going to the restaurant. Although we had never eaten there, I hoped he might remember the name, the location and walk to it. So I ran out of the station, grabbed another cab, this time back downtown to 22
^nd
Street.

When I told the cab driver what had happened, he asked, “Why don't you have cell phones?” How sensible! We didn't. But what were the odds of Jim using one? Jim didn't like phones period, and he was uncomfortable with technology. My daughter had sent us her old computer, and I had prevailed on him to read an email or to look at
The Irish Times
online. He would humor me for a few minutes and then ask me to print out the article; he preferred the feel of paper in his hands. He considered himself a Luddite. Owning a cell phone had never occurred to me.

I hurried into the restaurant and looked around. No Jim. I asked the
maitre d'
if he would keep an eye out for a man about 5'7” in a black-and-white herringbone sports jacket. Then I rushed down the block to the theatre. It was around noon; the show started at 3:00. I waited. I paced. I walked back to the restaurant. I walked back to the theatre. Charlotte Moore, the Artistic Director of the Rep, asked how she could help; the waiters at the restaurant offered me coffee. Charlotte let me use the phone. I called Grand Central. I checked my timetable. I called home and left a message on the voicemail on the off-chance that Jim said, “Screw it” and returned home. Could he find his way home? I called home again. No answer. What were the odds of his accessing the voicemail, even though the directions and password were on a card by the phone?

I paced uselessly and explained to a woman waiting in the lobby that my husband had some memory problems. She said, “My husband had Alzheimer's. He died.” I expressed my sympathy and knew her husband's problem had nothing to do with Jim's.

Time passed, no Jim. Charlotte said, “Perhaps he might have gone to the Irish Arts Center in midtown.” Had Jim taken a train to Queens or Brooklyn? Was he at a police station? Was he wandering around lost? Had he been mugged? What must he be feeling? Does he know his New York address? He has his South Carolina driver's license. I said to myself, “Go home … no, stay.”

At 2:55, as I was about to leave, and the curtain about to go up, Charlotte said, ‘He's here.” She had walked down the street and recognized the man I had described. She had said, “Jim?” He said, “Yes.” He was there, really there. When he walked in, I hugged him. He felt sweaty through his wool jacket, and we hugged each other as if we had been separated for months.

I was so relieved to see him. We held hands. Charlotte offered us sodas and cookies and asked if we wanted to come back another day. We looked at each other and shook our heads, “No”. She held the curtain for a few minutes and returned our ticket money. I lost a few months of my life that afternoon and felt indebted to all those New Yorkers.

I was beside myself that day because I was beginning to doubt his abilities. I should have had more faith in him. Apparently, when my train pulled out, he had taken the next one, a local, had gotten off at Astor Place and walked to the Public Theater. At the box office he asked if they were producing an Irish play. When he was told “No,” he found a Barnes & Noble and bought a copy of
The
New Yorker
. He looked for the list of shows and particularly for ones with Irish names; then he walked to the Rep. He was holding the rolled up magazine when he arrived. He had needed to speak to only one person. Piece of cake! Why was I worried? Clearly, I was overreacting.

Despite that dramatic afternoon, we continued going to the theatre in the city – more often by car. I drove. On the weekends we drove up to Tanglewood to hear concerts conducted by James Conlon, Robert Spano, or Seiji Ozawa.

Jim struggled to find the right word and avoided conversations, but he still walked to the library and read. He bought groceries. He walked along the paths near the Parkway. He knew how to get home, to unlock a door, to make himself lunch. True, he was walking more slowly and having some ‘memory problems.' If only his phone call to me about the train tickets, the message on the yellow post-it and the trip into town hadn't scared me so much.

During the previous winter, we had changed doctors in South Carolina. At our first meeting with our new internist, Jim had complained about not being able to concentrate. At the time, I had gotten testy when the doctor said, “Let's rule out Alzheimer's.” But now, I was unsettled, so I phoned him to express my concern. “Enjoy the summer,” he said, “we'll look at the problem when you return in the fall.” Because he sounded calm, I tried to be too – sort of.

Fall came. We packed, and I began the 800-mile drive south. Once on the road, though, I was on edge because I realized how vulnerable Jim was. True, Jim had found the theatre, but if I fell ill or ‘dropped dead,' Jim would be in trouble. Thanks to the taxi driver's advice, I had a cell phone plugged into the console of the car for emergency use and had tried to show Jim how to press the buttons, but he had no interest in it or couldn't learn how to make it work.

Despite my anxiety, the drive was uneventful. We stopped at Hershey, Pennsylvania for the night and stayed at The Hotel Hershey – only the best for my mildly impaired Jim. I told myself to breathe and not to overreact. In fact, the next day, Jim helped navigate around the Beltway in DC – no easy feat under any circumstances.

When we arrived in Hilton Head, my neck and shoulder muscles were tight, and I woke up in the middle of the night with my heart racing, and I was sweating. I was scared. I didn't want to wake Jim, but I called 911 – something I had never done before.

The emergency medical technicians (EMTs) took my blood pressure and explained that I was OK but asked if I wanted to go to the hospital. I said, “My husband isn't well.” Jim had slept through their arrival. They left, but I was still in a panic. I woke him and asked him to come to the hospital with me. Irresponsibly, I drove us to the hospital. My heart was OK, but my anxiety level was increasing; our internist gave me a monitor to wear. My fear was no longer just about flying and heights; it was now also about how Jim would manage if something happened to me.

Shortly thereafter, I met a woman who was asking herself the same question. What would happen to her husband if she died? Her husband had been diagnosed with Lewy Body Dementia and she with cancer. I had had the same fear as a single parent when Ellen was little; she, however, was adorable and had healthy grandparents.

It was only a matter of days after returning to Hilton Head before the next distressing event happened. I had thought that the note on the yellow post-it was bad. Jim awakened and apologized for leaving his new clothes at Paul Stuart in New York. I showed him that they were in the closet and assumed he had had a dream.

A few days later, however, Jim woke up, sat up in bed, looked at me, smiled and said sweetly, “Where's your mother?” He asked me just like that. I didn't understand his question. I didn't know how to answer. Bewildered, I said, “Mom is dead.” He asked again, “Where's your mother?” He was calm. I was, too. Was he dreaming? He climbed out of bed, took my hand and walked to the kitchen. He pointed to my handbag sitting on the kitchen counter and said, “Where is she?” I was dumbfounded and horrified. I said, “Sweetie, that's MY bag.” Jim was looking for me.