Part One of DIGNIFYING DEMENTIA:
It is voiceless now and sad beyond commentary.
I lay in bed listening for the sound of Jim’s breathing. Under the blanket his body was still. In the darkness, I couldn’t see his chest moving, and in the silence I couldn’t hear a sound. Is he alive? Please, Love, please be alive. Oh, God, is he dead? Please, be gone. Then it’ll be over. No! No, Cookie, please don’t be dead, please.
I inched up onto my left elbow, moved my right hand near his face where I thought his nose must be, took a deep breath, let it out and closed my eyes. I felt the warmth of his exhalation on my palm. He’s alive. Thank God! Thank God! But, oh, it would be easier if he weren’t breathing, if he were dead. Easier? No, I’m not sure, but the ordeal would be over – quietly and peacefully in his sleep.
Was Jim as ambivalent as I was about his dying? Was he even aware of life and death? ‘Ambivalent’? What a word! The 4:00 or the 7:00 movie? Pizza or a sandwich? That’s ‘ambivalence.’ Given Jim’s demented condition, why, one might ask, would I want him to live or die? Because if he died, I would miss that miraculous smile, those laughing blue eyes, and the remnants of his speech, those once-a-day utterances – without context – when he was ”leaving for Ireland with the President” or “going to teach me rugby.” Why would I want him to die? Then this seemingly cell-by-cell death would be over, as would my standing by watching a vital person transformed into a drooling infant.
For nine years, we were in limbo. How had we come to this point?
In the summer of 1997, I rushed Jim to the emergency room at our local hospital because he was bleeding rectally. A doctor took Jim’s history and then asked to speak to me outside the cubicle where Jim was lying on a gurney. I am five feet tall. The emergency room doctor, a man over a foot taller, looked down at me and said, “Your husband has dementia.” Without another word, he strode down the corridor. Dumbfounded, I watched him walk away and knew without a doubt that this guy was an idiot!
What did he mean Jim had dementia? What kind of diagnosis was that and on what did he base it? Nothing was wrong with Jim’s mind! He spoke clearly. He responded to questions. Why? For heaven’s sake, Jim was bleeding and scared. Because Jim turned to me for some of the details of his medical history? Because he couldn’t remember the date of the lithotripsy for his kidney stones? Was that why?
Jim could have cared less about medical details. In fact, he disliked dealing with medicine, and to Jim, doctors were the same as auto mechanics. They knew how the body worked, and you went to them to get the car or the body serviced or the part replaced. Being the medical historian was my job, not Jim’s. It was part of our unofficial pre-nuptial agreement. I answered the phone, remembered birthdays and made the appointments with dentists, doctors, plumbers, electricians, friends and family.
Jim, on the other hand, cooked, vacuumed, washed the dishes, waxed the floors, and dumped the trash. He did the laundry. He made the bed in the morning, and if I ventured into his territory, he took the trash bag or vacuum out of my hand. Occasionally, I was permitted to cook.
Jim didn’t have dementia. I knew what dementia was. I had seen the results of the scourge. My father was diagnosed with Parkinson’s with Dementia and needed a ‘minder’ for years, until he was admitted to a nursing home because his violent outbursts became too much for my frail, osteoporotic, rheumatoid-arthritic mother. My dad, the surgeon, loved practicing medicine, solving crossword puzzles, reading, going to art museums, and walking his dog. My dad, who took up the flute in retirement, had been reduced to a shell of a man unable to talk, walk or see. I knew dementia destroys lives and homes, causes the normal to become abnormal and the abnormal the norm. Good grief, Jim was not demented. He had rectal bleeding!
So besides our division of labor, who were we? We were simple folks, living uncomplicated lives. Jim was James, Seamus in Irish. His middle name was Benignus – for Brother Benignus, a local priest in Ireland. I am Elizabeth. Ours was a second marriage for both of us. He was a kind, unassuming man, who earned his living as a teacher and educational administrator. He was the funny, intelligent, hard-working, sensitive man I was fortunate enough to meet, fall in love with and with whom I spent half my life. I knew Jim for over 30 years and was married to him for 25.
A colleague introduced us. Jim was the Chairman of the English Department in a new high school in New York City. After six years at one school, I had become increasingly uncomfortable walking up and down the stairs with the kids and with the installation of a metal detector in the lobby. I saw a student carrying a gun at a dance, lost another who was killed after he made a winning basket at an after-school center and learned that yet another student missed classes because of the bullet wound in his leg. I was ready for a change.
The interview with Jim Tierney was scheduled for June 14, 1974. I remember the charm of the man; he remembered my red dress. A few weeks later, Jim called to offer me a job. I said, “Yes” and taught English in his department for four years, until I earned my doctorate and accepted my first supervisory position.
In late December 1974 we were chatting outside his office after school; the conversation became personal. He knew I was a single parent. “How come you never remarried?” he asked. “Because I never met anyone like you,” I said. Silence. Where did that come from? I was trembling. We said, “Good night.” I left. What had I said!
The next morning as I was punching in my time card, Jim put his head in the doorway of the front office, smiled and said, “I have made a decision.” With those words, our love affair began.
Jim was married at the time, but once he announced that he had made a “decision,” we met at a local diner where we talked for hours, or we sat and talked in a cold car in a parking lot. It wasn’t until a grad school classmate of mine offered us her apartment that we became lovers.
The following spring Jim moved out of his house into his own apartment. He left with his clothes, a box of books, some photographs, some paintings and a mountain of guilt. Instead of having more time together, Jim distanced himself from me. He brooded, drank his Beefeater’s Gin, cried, drank and cried. On some days he invited me to come over for a few minutes after school, but as the gin flowed, he said, “Go home.” He was riddled with guilt, and I felt helpless as I watched him weep, drink and regret.
In our years together Jim never talked to me about his first marriage, but a few years ago, an old friend of Jim’s said, “Jim’s marriage had been over for years; he stayed until the kids were grown.” I never heard Jim say that, but he was a fiercely private, decisive man who could say, “Let it go,” and did, while I, the worrier, dwelled.
Another extract from Part One of DIGNIFYING DEMENTIA will be published next week.