Dignifying Dementia (20 page)

When I was about to make my first entrance in the first play, I took a deep breath.
Where was Jim and why wasn't he here? Why was I doing this? Why did I have to do this?
Theatre hours were tough. Amateur directors and actors were late, not so with the Equity folks. Rehearsals were almost always at night, and I got home at 10:00, 10:30, 11:00. Sylvia stayed until I got back. With a baby monitor nearby, I collapsed on the sofa for four or five hours and dragged myself through the next day.

At first being involved with theatre was sheer delight and distracting. Going to rehearsals meant I was way over my daily allowance from the insurance company, so I had picked an expensive hobby, and rehearsals were time-consuming. Initially I was enchanted by the sensitivity and creativity and loved working with the Equity theatre.

But after about eight months, I wearied of the off-stage drama: the actor who missed an entrance and justified it with, “I am bored.” Another actor said, “Don't talk to me. I am bloated.” Another told the lead, “You are overdoing it when you kiss me.” A male diva was petulant with another actor, “When you don't say the line EXACTLY the same way, you throw me!” Two leads quit because they took umbrage at a remark about the Marine Corps. Another actor “left theatre” because he didn't win an award; actors were directing the director; a stage manager hated actors; an amateur actor was “sick of working with amateurs”; a director HAD WORKED in Washington; another HAD WORKED in New York; a director told us we all “sucked.”

During rehearsals, I struck up a conversation with another actor who asked me what I did for “extracurricular activities.” “Theatre,” I answered. Did he mean bridge? Golf? Tennis? He clarified by telling me about his “strained” relationship with his wife. I added that to my classmate's weekly pass requirement.

I became friendly with a couple. When he was hospitalized, I sat with her. Then they decided to relocate. She headed north first, while he packed up the house. I offered him some empty cartons, but he called me one evening and said, “My wife is feeling fragile. She said to stay away from Dr. Tierney.” I couldn't believe it. And my therapist worried that I was becoming isolated!

While I had found being involved in theatre an all-consuming distraction, I was losing my enthusiasm because of the added expense, the lack of sleep and the drama. I had read in my book on feng shui about “freeing oneself from physical, mental, emotional and spiritual clutter.” I read that difficult people could be “clutter,” too. I needed space from all the drama within the drama. I gave acting a rest, but not before I wrote a couple of articles supporting the local theatres.

I was trying anything to change the subject, but nothing I did took my mind off Jim and his illness. Absolutely nothing. Everything else was transitory. I tried to take it one day at a time to create meaning where there was none. True, I was becoming more self-reliant, and thanks to the acupuncturists, mediums, psychics, psychotherapists, massage therapists, Taoists, Buddhists, and mostly to caregivers and my high school classmate, I was learning to laugh – a little.

I don't remember who told me not to cry in front of Jim. I tried not to, but I cried everywhere else. Are we born with a finite number tears? If they are limitless, then we won't use them up falling out of a swing, skinning our knees, or being disappointed by our birthday gifts.

For nine years, I had cried for me, for Jim, for us. If I failed to cry on any given day, then I made up for it on the next. I understand crying relieves stress. If so, then I was stress-free. I cried aloud or silently, for minutes, for seconds. A sob crept up my throat; my eyes welled up with tears. I took deep breaths.

The reasons for the tears were equally boundless: frustration, loneliness, helplessness, fear, anger, sadness, the loss of the man, a friend, a point of view, a sounding board, the dreams, the shared memories and shared experiences, the adventures. I cried because of his neck, his deterioration, physicians' attitudes and remarks. I cried when I hurt my back, when Jim took off his clothes in the middle of the day, when he missed his mouth with a spoon, over money. I cried because I was living where I didn't want to be. I cried when he said a phrase that touched my heart, when I looked at what our lives had become and at an uncertain future. I cried in disbelief when he lay on the floor instead of the bed, when he punched me, when he wouldn't get out of the car, when I couldn't tell him something funny, about a new restaurant or going back to Paris sometime. He couldn't say, “Keep going,” or “Take a break,” or “Have fun.” I cried because I couldn't believe an illness like this was happening to anyone, and certainly not to Jim.

And I could cry anywhere: over the computer, in the car, in the shower, in bed, in doctors' offices, backstage, behind a shopping cart, in the bathroom, in the kitchen, in restaurants, over coffee, in the movies. I cried when I was alone and when I was not. I cried the first time I walked into a hospital or supermarket without him, or into a Paul Newman movie without his being there to say, “Not bad for an old guy,” or “No, we don't need any blueberries.” I cried when I saw him frightened by a new aide, when he was handled roughly, when he couldn't walk.

Jim cried, too.

The aides who loved him cried.

Dementia robbed us of a beautiful human being. When I asked my therapist who invented it, without a beat, he said, “Satan.”

But I did learn to laugh, and I would never have been able to had it not been for Carrie's ability to see the humor in the madness. She and Sylvia and Denise and another new member of the team, Martha, threw their heads back and laughed or said, “He had us on the floor.” They were not laughing at him. They were laughing at the impish twinkle in his eye. Even though he might have said nothing at all, they were ready for something mischievous—just like the old days. Until Carrie arrived, it was impossible for me to see anything except who he had been and what he had been reduced to; the comparison was excruciating.

But slowly I began to see the humor when he ‘fired' us, or when I brought home a sandwich, and he said, “Is that the best you could do?” His voice was low, barely a whisper. Often the words weren't real ones; they were sounds or garbles of letter combinations. Sometimes, I was convinced I was hearing Gaelic/Irish. Then, in the middle of the garble, there would be a perfectly-formed grammatically-correct English sentence or a sentence fragment. When he asked me if I had quit, I was delighted and I told him, “I haven't.” I smiled when he asked if I was divorcing him and said, “No, I am not divorcing you.” When he suddenly announced that he “had to get to a meeting,” I could reassure him that the office called to say the meeting was rescheduled. I learned to be happy when he asked Carrie, “Do you have a car?” I laughed when I walked in, and he was sitting in his recliner; somehow he managed to put his hands on his hips, and he looked at me and said, “Well, well, well.”

One morning he looked at his breakfast and uttered, “Not that same mess again.” Carrie and I laughed when he was watching
Gunsmoke
, and he suddenly said, “Good-looking jacket, but not my style.” I laughed when he applauded during a soccer match or a football game – for no apparent reason. I smiled when he wanted to go “upstairs” or to the “loo,” or when I heard him say, “Beautiful” while he was listening to one of the
Brandenburg Concertos
. When he put his baseball cap on backward, Carrie smiled and called him her “homeboy.” It was lovely to see him hug Carrie, Martha, Sylvia and Denise.

When he hissed at me like a snake to scare me off, I could smile, or when Carrie told me he was “picking out a bathing suit for me” in the Land's End catalog. When the Gulf War started, there were three images on the TV screen, one each of Blair, Bush and Hussein. Jim shook his head slowly and said, “That schmuck.” When Reagan's picture was on the cover of
Time
, Jim said, “Never heard of him.” Carrie, Jim and I were in the elevator, and he suddenly looked at me and said, “You are an innocent, and she is just stupid.” Neither of us knew where that came from, but we both laughed. I still do.

While I cried at the drop of a hat, I came to appreciate the magic of those once-off, once-a-day utterances. At times, I could say, “You are up to mischief,” and his eyes twinkled. We handed him a glass with a teaspoon of Jameson mixed with water and ice, Jim said, “Cheers!” Like Jim's love-hate relationship with Ireland, I began to have a similar one with his illness because of my abounding joy in those moments and deep sadness for all the rest.

Carrie brought him treats. Sylvia brought him special Caribbean meals on the holidays. They phoned each other to make sure that they knew about any changes that occurred. They didn't miss a red spot or a scratch. They loved him. I was often out of the loop.

I had profound bouts of depression. I was tired of living like this and tired of living. I knew my job was to be sure that Jim was safe. I knew someday it would be over. And I was not prepared. I had no dreams of going to Ogunquit to have lobster roll without my best friend. I knew what the New York City streets felt like without him. And a flight to Dublin without his hand to hold? Would I be able to breathe clear Irish air without gasping at his loss? Oh, yes, I thought about Jim's dying; we would both be free, but I didn't see the future as opportunity anymore; I was waiting to get older, for my turn in the barrel, in a nursing home without my teeth, waiting to die.

Laughter is not at all a bad beginning for a friendship, and it is far the best ending for one.

Oscar Wilde

Five years after his diagnosis, I had accepted that I couldn't go it alone and had looked for help. A year later, we had a brilliant team, and I had begun to venture out. One would have thought that life would have been easier. It was. But life became difficult in different ways.

We had a schedule – unless we didn't. Carrie came during the week, Sylvia on alternate weekends and at the end of the day after Carrie left. Martha alternated with Sylvia, and Friday evenings always required creativity. But the schedule was always held together by a thread. When Denise broke her rib, we scrambled. When Sylvia left for vacation, we maneuvered. When the holidays were coming, we planned months in advance.

As the months went by, Jim's ability to walk was severely impaired. Some days, his legs worked; other days, they didn't. Eventually, they failed him completely.

I hadn't realized that he would be unable to hold cutlery, to bring a spoon to his mouth, to feed himself, or that his tongue would tremble. In time he spoke in whispers in an unintelligible language. He was unable to bend his knees, to support his weight, or to lift himself to a sitting position. He would put a book or washcloth on his head like a hat, or position his glasses so that both lenses were on one side of his nose. He choked on food.

That he couldn't write hit me when I was cleaning a closet that had some boxes of papers and cancelled checks. When I opened the boxes, I was heartbroken to see Jim's handwriting on them, and then I found some file folders on which Jim had written “Social Security”, “Medicare”, and “Warranties.” I saved a few cancelled checks and all the file folders. Later I met a woman whose husband had died, and I understood completely why she never changed the message on her answering machine; his voice was on it.