It is voiceless now and sad beyond commentary.
Pat Conroy
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.
Jim mended slowly from leaving his marriage; we lived apart. However, when a school district offered me an administrative position, Jim said, “Let’s live together.” We did. Then, after Jim’s divorce became final, we married in a judge’s law office. Romantics that we were, we both had gone to work in the morning and celebrated by dining out that evening with Ellen, my daughter, the other important person in my life. Over the years we celebrated birthdays and anniversaries with dinner or lunch at a restaurant.
A sensitive soul with demons and self-doubts, Jim was a respected administrator, who worked hard and fostered loyalty. If school began at 8:30, Jim was there at 7:00. He served the teachers and the principal, who considered him his consigliere. Not only did Jim work long days, he also worked long weeks. When I met him, he had his day job, his night job and his weekend jobs – one at a Yeshiva – and when he quit the weekend job, he immediately became an adjunct instructor at a local college, where I taught also.
Jim cared about making a difference in education. One piece of advice he gave me when I stepped into my first administrative job was, “Do everything you can to help teachers improve, but be prepared to make a decision one way or the other the very first time you observe them.”
He had a beautiful voice, was soft-spoken and mild-mannered. Only once do I recall his losing his temper at work. Those of us who heard his raised voice were stunned. Jim Tierney shouting? I mustered the courage to ask him what had happened. He winked at me. He said, “I wasn’t angry. It was meant for everyone to hear.” He grinned and said, “It’s important that people think you’re a little nuts.” He was right. We all toed the line after that.
When I became a supervisor, college lecturer, assistant superintendent, trainer, writer, speaker, whatever, I turned to Jim to help solve problems, because his skills, gut, patience, good sense and wit were invaluable.
For example, in my new district, the superintendent delighted in using my shiny, new doctorate as a wedge among his other administrators. Divide and conquer, I supposed. Each quarter the superintendent evaluated us with a ‘motivational document’ he had developed. On each of over 200 items, he gave a ‘C’ for commendable, ‘S’ for satisfactory or ‘N’ for needs improvement. After each evaluation the administrators would gather and ask each other, “How many Cs did you get?” Jim had suggested that, after the evaluation, I innocently ask my colleagues, “How do you get Cs?” I did. Immediately, my colleagues became solicitous. With one strategic question, my guru had diffused the tension.
While Jim had a Machiavellian, sardonic sense of humor, he was also a self-effacing loner, who frequently said, “I’m not good at small talk.” Despite that opinion, people were struck by his intelligence, humor and enviable command of language. He had a mellifluous voice and a wonderful laugh. But he struggled with a sense of inadequacy. Believe it or not, he was loath to change a light bulb for fear of breaking it. He would ask me, half in jest, what I saw in him. He said, “I am an old man, and you are 16.” Not quite, we were 10 years apart. I was 55 when he was first diagnosed with dementia; he was 65.
As for his physical health, nothing unusual, he struggled with high blood pressure, high cholesterol, kidney stones and, eventually, poor hearing. Ironically, once he became ill, his blood pressure was perfect.
His insecurity probably stemmed from his childhood, about which he often spoke. A Leo, he was born in the Bronx, New York, on August 19, 1932, of an Irish mother and father who had immigrated to the United States. According to her death certificate, his mother, Anna, died of a postpartum hemorrhage on the day of his birth – a fact that colored his life. His father returned to Ireland, and Jim was left in the care of his grandmother, who eventually brought the toddler back to Drimnagh, a working class neighborhood in Dublin, there to be reunited with his father – and his father’s new wife.
Jim often said, “I felt I didn’t belong to that family.” When Jim was a young teenager, he found a Mass card with the name Anna Geary Tierney on it. Only when he confronted his father with it was he told of his mother’s death and learned that his ‘mother’ was his stepmother and the other children, stepbrothers and stepsisters. Only then was he introduced to his mother’s family in Aglish, County Waterford. When I met Jim, he spoke with affection of his Uncle Jack and seemed removed from the rest of his family – particularly his father.
According to Jim, his father was impatient and frustrated by Jim’s lack of manual dexterity and by his love for books. A voracious reader, Jim talked of ‘mitching’ (cutting) from school, strolling along the used bookstalls by the River Liffey, or biking into the Dublin hills to read, or hiding under the covers at night with a book. Jim won a scholarship to the prestigious Synge Street School in Dublin, where, like his father, the Christian Brothers beat him.
Jim needed to read every day: newspapers, magazines and books. He read a daily paper, preferably The New York Times and, on Sundays, he savored his favorite section, the Book Review. Until the editorial changes, he looked forward to the arrival of The New Yorker and read it cover to cover and missed the Saturday Review. Jim’s idea of a good time always included a book: Friel, Parker, Yeats, Wilde, O’Neill, Synge, Shaw, McDonagh, O’Faoláin, Higgins, Trevor, le Carré, Kinnell, and Ellman.
In time, Jim’s father re-immigrated to the States with his family. Once again in New York City, Jim attended Power Memorial and went on to Fordham University. He worked; he studied; he married. He said to me, “I married in part to get away from my father.” Jim had four children.
While he was in school, he had a part-time job at the now defunct men’s clothing store, Rogers Peet. An Irish-Catholic in a predominantly Jewish business, he referred to himself as the “token goy.” Clothing and appearance mattered to Jim, and Ireland and Rogers Peet influenced his style: herringbone tweeds, moleskin slacks, silk rep ties, Johnston Murphy shoes or his elegant Ferragamo loafers. An Irishman, he probably would have worn his Sunday best when he gardened if I hadn’t introduced him to the notion of wearing blue jeans and Rockport sneakers.
Rockport shoes and Rockport, Massachusetts – Jim loved the sea, to travel and have ‘adventures.’ With the extra money I earned from seminars based on my dissertation on the use of the novel in the training of managers, we rented a house in Rockport, Massachusetts for the summer. There, we walked along Marmion Way, along Back Beach into town, up to Bearskin Neck to look at the water, the lobstermen and their boats.
He also loved gentle hill country. One weekend we went to Berkshire County in Western Massachusetts. On the drive back to our rental apartment near the city, he suggested we consider buying a house in Columbia County in upstate New York – it reminded him of Ireland. And, he said, “A house would be a great tax write-off.” Irishman that he was, Jim preferred owning rather than renting.
So, on another weekend, we went to look for a house. On the way, we played ‘Which House Would YOU Buy.’ Near the realtor’s office, we saw a little white Cape sitting on about an acre of land. We both shouted, “That one!” We described the house to the realtor who said, “It’s for sale and has a low bid on it.” We looked at the house and made an offer: one afternoon, one house, one offer – a few phone calls later, a mortgage application, help from my dad, and we were homeowners.
We had a weekend house. There, our cat, Mulligan, roamed about the yard, stalked deer, caught garden snakes, brought field mice to the doorstep, pounced on falling leaves and was nearly savaged by an enraged blue jay.
Our neighbors, Peggy and John Simpson, were kind, generous and, unknowingly, anxiety-producing. If Jim saw John driving his tractor mower, Jim would laugh and say, “Oh, God, I have to get out there. I can’t have our grass a quarter of an inch higher than John’s.” And off he would go to mow.
Jim planned and farmed a patch of land; he grew tomatoes, corn, grapes and asparagus. He plotted revenge on Japanese beetles, deer, woodchucks and rabbits. He cleared raspberry bushes and reclaimed land. Meanwhile, I worried about his blood pressure and overexertion, as I watched him pushing his mower up the back hill. He was delighted with the used, red Ariens tractor mower I bought him for his birthday.
In essence, life was easy. On Sunday mornings we headed to the Bakery for pancakes or French toast. When Jim wasn’t mowing, raking, pruning or weeding, he was in the hammock reading a book or The Sunday Times. In the winter we read by the fire and walked in the snow.
Like most weekenders, we delighted in the scenery, the fresh air and the quiet. Soon, we decided to leave on Monday mornings at 4:00 am, rather than drive back to our apartment on Sunday afternoons. That way we had a few more hours in the country before heading back to work. Jim drove. I was the deer lookout, and the threat of a snowstorm didn’t stop him from making that two hour and 10-minute drive each way every weekend. In all, we may have missed only one or two weekends a year.
Eventually, we thought about giving up our apartment near the city and living full-time in the country. To do that we needed jobs in the area. One Sunday we saw an ad for the English Chair at Hudson Valley Community College (HVCC) in Troy, New York, about 40 minutes north of our weekend home. We decided we would both apply for the position, and, if either of us got the job, we could become full-time residents. Amazingly, we were both called for interviews – on the same day – at 10:00 and 11:00. I went first, and on my way out I whispered to Jim, “It’s your job. They have union troubles.”
Jim had been the United Federation of Teachers’ (UFT) chapter chairman before becoming an administrator. The selection committee at Hudson Valley Community College put three names before the board: Jim’s, mine and that of a third candidate. We waited several months to hear the results. I was number two. They named Jim Chairman of the English Department.
Thus, our weekend house became our year-round home. Two years later when we were on vacation in Ireland, Jim called his secretary, Lorraine, from a phone booth on a windy Rosses Point in County Sligo. For an unassuming man with his own demons and insecurities, that call was special. Jim had applied for another position at the college. Lorraine told him that he had been named Dean of Liberal Arts and Sciences. He looked so proud and happy, and I was thrilled for him. To celebrate, he said, “Buy yourself a present.”
“Get something for yourself,” was typical of Jim. At times his reluctance to celebrate or buy gifts for me or for anyone else made me ‘nuts.’ I, on the other hand, loved to give him presents: books, pipes, trips, clothes and even tractor mowers. When it came to buying presents or to writing poetry, he had to be perfect – certainly never wanting. Would that he had written more.
His forgetting my 50th birthday was particularly painful. I remember looking at him just before I left for work, saying, “Would you please wish me a Happy Birthday?” He grimaced. Don’t ask me how he managed it, but within minutes, I was feeling sorry for him because he was feeling guilty about having forgotten.
Even though I had applied for the chairman’s job at HVCC, within three years of earning my PhD in education I wearied of the school business. I resigned my administrative position and took a job as a recruiter with a personnel agency in Manhattan. Despite welcoming the change, I was terrified of leaving my job, my profession and working on commission.
My mother’s reaction was, “What are you making? Nothing?”
Always my supporter, Jim said, “You’re the gutsiest broad I know.” And added, “Don’t worry. We’ll be fine.”
He was right.
I enjoyed personnel work; it was fast-paced, required listening, planning, problem-solving, motivating, involved no committees, and I felt I had a more immediate impact on someone’s life. But once Jim was working full-time at the college, I began looking for work upstate because the six-hour, round-trip, scenic commute into the city by car and rail was expensive and exhausting. In time we commuters came to know each other very well; we knew who slept, worked or chatted on the ride into Manhattan. We even organized a picnic for commuters and trainmen at Claremont Park. Around the holidays, regular passengers brought chocolate truffles and wine.
Occasionally I stayed over in our rental apartment near the city. Over the years Jim and I were rarely apart – so few times, in fact, that I can name them: obligatory work-related retreats and conferences – in Saratoga for Jim and Williamstown, Lakeville and Gettysburg for me; overnight hospital stays in Dublin, Hilton Head and Boston and Jim’s trip to Ireland. We preferred each other’s company.
Whenever we were apart, I phoned Jim to catch up on the day’s events. One night he said, “The mosquitoes are merciless. I have been clearing the yard, and I’m covered with bites. Frankly, I’m not feeling well.” The next day when I returned home, I saw that Jim’s itch was not caused by insect bites. He had a rash from poison ivy. Mosquitoes? Poison ivy? What mattered to Jim was the bottom line – he itched.
After one awful 11-hour round-trip train ride, my half-hearted job search upstate became more aggressive. While I thoroughly enjoyed what I was doing in personnel, we weren’t living in a ‘wired’ society yet, and the commuting was wearing.
We were able to let go of the apartment when I was hired as Personnel Director for an educational services organization about 35 minutes from home. The organization provided shared services to school districts. Along with my Human Resources duties, I had an opportunity to design handbooks, create a recruiting fair as well as several educational seminars for administrators.
One day, the superintendent of one of the participating districts spoke to me privately, “Would you be interested in the position of Assistant Superintendent in my district?” I said, “Yes.” She added, “I am going to speak to your Superintendent and ask for you to apply,” and she added, “And I want you to act surprised when he tells you.” I said, “I will.” Mistake! I should have consulted Jim.
A month or so went by, my boss called me into the office and told me about the position, and I did as I had promised – I acted surprised. I applied, was appointed and became operationally responsible for the district during a political ‘mess.’ We reopened the pool and the library, scheduled assemblies, put student artwork in the halls, organized a major outdoor event, hired new staff and encouraged team teaching. It was a great and gratifying challenge.
However, my former boss had a long memory and didn’t forgive. He learned that I had known I was going to be recruited and was livid that I had been dishonest with him and had misplaced my loyalty. So when the Superintendent’s position in the district became available, and the school board put my name forward, I was told that my previous boss told the school board in no uncertain terms that he would oppose my candidacy. While the board had given me authority and supported my recommendations for change in the district, they acceded to his position. No surprise. But I was devastated. After the initial shock, I began looking for jobs elsewhere. Jim came with me on the interviews. But I realized that, even though the names changed, the public school business was the same.
One night we were home sitting by the fire. “Why don’t we move to Ireland?” For years afterwards, we debated which of us had had the ‘epiphany.’ It was to become our final great adventure – and ‘great’ it was.
Why Ireland? When we first met, Jim talked of his ‘love-hate’ relationship with the country. In 1976, I bought him a present of a round-trip ticket for a two-week vacation during the Easter break. Tears came to his eyes when I surprised him with a model of an Aer Lingus plane and his ticket. He flew to Ireland, traveled around the country and saw his Uncle Jack for the last time.
Three years later Jim and I went on a two-week vacation to Ireland – my first trip. I loved the country, the blue and gray skies, the openness and warmth of the people, the lush countryside. We saved our money and our vacation days and went to Ireland for our annual two-week vacations as often as we could. One year on the way to the airport, I gave Jim a gold self-winding watch for his birthday.
Our half-joke about relocating to Ireland became a reality. Even though his pension was small, Jim was old enough to retire and did, and he was champing at the bit to leave. I, however, needed a few more weeks at work to ensure my pension rights. When I gave notice, we put our house and car on the market, arranged for the driveway to be plowed and for friends to watch the house. Sadly our cat, Mulligan, had disappeared one night. We arranged for our new cat, Molly, to be adopted by a friend – who promptly flew with her to St. Thomas in the Virgin Islands. Over the years, we had Daedalus, Blazes, Mulligan and Molly – all Joycean cats. Guess who named them?
As eager as I was to try our six-month ‘adventure,’ I felt guilty leaving my aging parents and my daughter Ellen, who was now living in New York after having graduated from Vassar. I remembered justifying the decision by saying, “We have to do this now, because you never know what’s going to happen.”
We flew to Ireland in January 1989. The daffodils were blooming when we landed in the morning in a frosty Dublin. We had our savings – $10,000 – and planned to try three months on the east coast of Ireland and three on the west. Jim’s new pension just covered our expenses at home: car payments, mortgage, utilities and snowplowing. I had no income. We spent the first night in Dublin in a ‘grotty,’ cold bed and breakfast, wondering what the hell we had been thinking.
Very quickly we learned that there wasn’t a job to be had and that we could only rent for a minimum of six months, so we decided to try Dublin for the six months. Naturally rents for our first flat were higher than we wanted to pay, and the rate of exchange was not in our favor. While I was quietly freaking out, Jim said, “Have faith. Things work out.” They did. Our six-month experiment lasted six years.
We took a taxi to our first flat in Dublin. The next year we drove our leased Mini to our new rental cottage in a village further south in County Wicklow. A year later we needed several trips in our leased four-door car for our third move to a mews house, also in County Wicklow. We were acquiring ‘stuff’ – our boxes of clothes, books, LPs, and pictures that we had packed before we left – ready for shipping.
We had spent most of our $10,000 by the time our car sold in the States. The very next week I came back home with my first IR£200 check. I had been paid for consulting on a PriceWaterhouse/University College Dublin (UCD)/Hungarian Ministry of Agriculture project. Really! That ‘gig’ led to a lectureship and process consultancy on the Faculty of Commerce at UCD. I taught graduates, undergraduates, and postgraduates, and the dean asked me to develop courses in Business Ethics as well as Personal Skills in Business. I even taught in Hungary.
Soon, in addition to the lecturing and consulting work at UCD, I was delivering workshops for the Irish Sate agency for hospitality and management seminars for a British training company. I wrote seven ‘how-to’ books, as well as academic and popular articles for journals, magazines and papers. I spoke at conferences in Killarney, Waterford and Belfast. What a life! It was unbelievable!
One afternoon Jim said, “You owe your former boss a thank you.” What? I couldn’t believe my ears. I was still smarting from the blow to my career and my ego. Jim said, “He did you a big favor. If it hadn’t been for him, you’d still be there!” Right again, Jim. He turned my simmering anger into gratitude.
Our lives were idyllic. We strolled along the strand, along the piers at Dun Laoghaire. One evening, we were delighted by a window in a bookshop downtown; it was covered with posters promoting my first book, ShowTime! We visited Jim’s old neighborhoods in Dublin. We drove through the mists of Connemara and walked around Galway. We meandered through Cork, Waterford and Portumna. We went to see the Druid Theatre Company, and to the Gate and the Abbey Theatres. We ate fresh scones and jam in Enniskerry.
Jim drank Jameson in the pubs in Dublin; we ate sausages at Bewley’s. We walked. We laughed. We had cold feet and noses at night. Jim bought treats for Kelly, the golden retriever, who visited the mews house. Our biggest problems required Jim to shoo sheep off the front lawn, get mice out of the cabinets, or ask the traveling people, the tinkers, to leave the property. One morning as I was driving to work, two horses galloped down a hill into the side of our car. Neither of the horses was hurt, nor was I, and no one at UCD was remotely taken aback by my excuse for being late.
While Jim welcomed retirement and chose not to work, he did write some articles for Variety International. Always introspective, the interviewing process made him uncomfortable, and he no longer wanted responsibility. He wanted to read, to walk and to travel.
Eventually, our little house in upstate New York sold. I felt sad. But ever the pragmatist, Jim said, “It was time to sell it. I was worried about the plumbing.”
With Jim’s pension, my income from the university and no more financial responsibilities in the States, we were able to travel. I was always a nervous flyer, so Jim held my hand on every flight, but he insisted on my looking out the window at the sights as the plane banked to the right or left. We traveled together to conferences in London, Bath, Luxembourg and Milan and to deliver training courses in Manchester, Budapest, Belfast and Debrecen.
And for pure fun, we visited Rimini, Florence, Copenhagen, Bruges, Athens, Palma, Amsterdam, Moscow, St Petersburg, Helsinki, Oslo, Warsaw, Berlin, Paris, Cannes and Monaco. We stared in disbelief at the Kremlin, Checkpoint Charlie, St Peter’s and Elsinore. We held hands wherever we went. We ate thin-crusted pizza in Nice, ordered moules avec pommes frites in Bruxelles, ate croissants in Paris. We fought off urchins in Rome and got caught in a train strike in Sorrento and a vaporetto strike in Venice.
And always, in addition to the museums and palaces, bookstores were part of the itinerary. Jim could sniff out bookstores in Europe as well as he had in the States. He went to the Strand or the Gotham in New York, Toad Hall in Rockport, Shaver’s in Savannah, the Harvard Book Store in Cambridge. In Europe there was Shakespeare and Company in Paris, Waterstone’s and Hatchard’s in London, Kenny’s in Galway, Hodges Figgis in Dublin. He didn’t necessarily buy; he browsed. However, he would buy Bernard McLaverty, Desmond Hogan, Michael O’Siadhail, Lar Redmond, Bernard Farrell and add them to his “Irish collection.” Books were always in his life. He once said, “It’s time to get rid of the books.” I couldn’t. We didn’t. They traveled with us.
Even in the south of France, Jim found English books. During UCD’s winter semester break we headed to Nice, because we enjoyed the food, the open markets, the sunshine and the walk along the Promenade des Anglais, where we admired the elegant, mink-clad women walking their equally fashionable, adored, adoring and adorable dogs.
One winter, though, our travel agent in Ireland said that the studio apartment we had previously rented in Nice was unavailable. I was disappointed. “What if we go to Hilton Head, South Carolina instead? It’s off-season,” I said. “We would be paying for the trip in Irish punts, and with the rate of exchange in our favor, we could afford to go. And the water pressure would be a refreshing change.” Hilton Head came to mind because we had spent a pleasant week’s vacation there some years earlier and had returned for a conference, where serendipitously an editor bought the rights to ShowTime!, which was added to their academic series. The magic seemed to be non-stop.
Jim concurred. So that year over the winter holiday, we flew to Hilton Head. We walked along the beach and biked the trails. What do non-golfers do on rainy days? Look at real estate, of course. I asked Jim what he thought about buying a condo in Hilton Head. “If we owned a place, we could come to Hilton Head in the winter instead of worrying about whether we could get a studio in the south of France.” We were renting in Ireland and no longer owned property, so I used his old line on him: “We would have a tax break.” We bought a condo.
Shortly after returning to Ireland and to my classes at UCD, we received a phone call from my mother’s live-in aide. Mom had been taken to the hospital diagnosed with a stroke; the physicians found breast cancer, too. We stayed in touch with her doctor and decided to fly back to New York to be with her. From there we returned to Hilton Head, found a nursing home and hired an air ambulance to fly her south. She died two weeks later. My profoundly demented dad was unaware of my mother’s death. He died two years later – four months after Jim’s initial diagnosis of dementia in June.
Earlier that year, as we had been walking along the strand in Bray, Jim had said, “It’s time to go home.” Did Jim have intimations of his own illness? How long after a neurodegenerative disease begins to wreak havoc before symptoms appear?
Leaving Ireland was bittersweet. Besides having fallen in love with the country, I was thriving on the lecturing, writing, speaking and consulting. Leaving brought it all to a sudden and dramatic halt.
We were living in our condo in Hilton Head when Jim developed rectal bleeding. It was in South Carolina that the emergency room doctor said Jim had ‘dementia’ and walked away. Jim was admitted to the hospital, where a gastroenterologist treated him. An endoscopy revealed that Jim had a bleeding duodenal ulcer, which was repaired. After the procedure, the surgeon said to me, “Be sure Jim is never treated with Versed again.” Versed is often used in surgery because it causes drowsiness, reduces anxiety and prevents memory of the event. The doctor said, “Instead of sedating him, the drug made him combative.” Jim stayed overnight in the hospital – a night apart.
I went home and slept poorly, concerned not only about Jim’s procedure but also about the offhand (but sadly accurate) remark about Jim’s having dementia. I saw the image of my father in the nursing home – twisted, sightless and voiceless.
No, this could not be happening to my husband, too. Again, I asked myself, “What made the doctor say that?” He didn’t know Jim. I calmed myself by repeating a phrase my statistics professor had used in grad school. This doctor was definitely “generalizing beyond his data.”
Jim had never been the detail guy. Jim was the global member of our team. We had joked that he saw the ‘forest for the trees,’ and I saw the ‘trees for the forest.’ Jim wanted to buy the weekend house, to work upstate, to go to Ireland – the big picture. It was my job to implement the concept – his vision. That was not dementia; that was intuition and insight. He was the one who saw people for what they were, the one who said, “Why are you getting upset? You know who they are.” Because Jim didn’t remember dates, treatments or hospital stays? That wasn’t dementia; that was lack of interest – like the itch he thought was from mosquitoes rather than from poison ivy. My dad referred to all birds as ‘robins’ and all flowers as ‘roses.’ I prayed, Please, oh, please, let it be lack of interest.
When I returned to the hospital in the morning, our regular internist was making his rounds and writing his notes. My eyes were brimming with tears of rage and frustration. I interrupted him as he was completing his paperwork and told him what the emergency room doctor had said to me about Jim’s having dementia. Our internist looked up and said, “How does he handle the checkbook?” “How does he handle the checkbook? I do the checkbook,” I said. “Just watch him,” he said. That was that.
That June day was my personal 9/11. It was to become my first day as caregiver and bystander. I use the word ‘bystander’ deliberately; a doctor once referred to caregivers of dementia patients as bystanders because we are helpless.
I now know two kinds of helpless: ‘helpless’ being unable to talk to someone who is unhappy and ‘helpless’ watching someone’s mind and body deteriorate from an incurable illness. I prefer the former. If you can communicate, there is hope. Profoundly depressed after the end of his marriage, Jim eventually rallied. Once he was ill, however, there was no hope. We could not change the course of the disease.
It also was the first day of my newfound contempt for, and distrust of, many members of the medical establishment. In time we would learn that the preliminary diagnosis was accurate, however reprehensible the manner of utterance. I felt both physicians lacked empathy for me and for Jim. They labeled, made short shrift of us and left.
Jim was discharged from the hospital with an admonition that the combination of taking daily baby aspirin and drinking alcohol causes gastrointestinal bleeding in some people. The good news was that Jim mended quickly.
The bad news was that I became hypervigilant and began watching Jim’s every move. What I saw, or imagined I saw, was a man less inclined to make decisions, which frustrated me because I had delighted in his decisiveness. The man I had leaned on for quick answers seemed to be offering fewer, and I found myself agonizing over the wisdom of each one of mine. I remember and regret saying to him, “I feel as if I am leading two lives.” Even going out to lunch became more difficult. He was passive. He would look at the menu and say, “Sweetie, I don’t know what to get. You order.” When the bill came, he would pull out his credit card from his wallet, hand it to me and say, “I’m buying. You add the tip and total it.”
Not only was he becoming more indecisive, he was also becoming more insecure behind the wheel of the car. He had a panic attack driving over the Broad River Bridge. To me a panic attack crossing a bridge was understandable. I hate airplanes, suspension bridges and heights in general; the bridge was just under two miles long and only two lanes wide at the time. What was different was that Jim was the one having the panic attack – the man who held my hand on airplanes, the man who could deplane after a transatlantic flight at dawn – jetlagged – and drive the 135 miles from Shannon to Dublin in a stick-shift rental car on the left side of the road without missing a beat. This was the man who raced ahead of snowstorms, who drove to our weekend home year in and year out. The panic attack bewildered him, too. Unnerved, he asked me to drive back across the bridge.
Several times after that experience, he got behind the wheel of the car, drove a short distance and said, “I’m not feeling great. Do you mind driving?” He pulled over, walked around to the passenger side, while I got behind the wheel. The few times he did drive after that, I watched him grip the wheel with both hands, hug the curb, and drive well below the speed limit.
When he was driving, I noticed a faint tremor in the index finger of his right hand as it rested on the steering wheel. I drew it to Jim’s attention. He dismissed it with, “It’s probably the wheel alignment.” A month or so later, he stopped driving altogether.
His walking changed too. In the past, whenever we walked, and I dragged my heels, he would look back at me and say, “Step it out.” I had been hard pressed to keep up with him, but now he was keeping up with me.
He also told me that the self-winding watch I had given him years before was losing time or stopping. I suggested that, after all these years, it probably needed a good cleaning. Even after the repair, however, it still stopped, so we took it back to the jeweler.
The watch doctor said, “Are you swinging your arms? I have a client with Parkinson’s whose watch doesn’t work.” I began to watch Jim’s arms. He wasn’t swinging them as he walked; they were hanging straight down and closer to his sides. We bought a $30 Timex.
In the first year after the casual emergency room diagnosis, Jim gave up driving, developed a tremor in his finger and became indecisive and withdrawn. While Jim had always preferred his own company and mine to the company of others, he occasionally welcomed joining friends for lunch or for a drink. Now he seemed to be avoiding other people, to be losing what confidence he had.
He also expressed concern about having difficulty concentrating on his reading. Not that! How many times over the years had he smiled and said, “I haven’t read for two days. Would you go into town or have coffee with a friend, so I can read?” The last fiction he read was Richard Yates’ Collected Stories; the last poets, Galway Kinnell, Paul Muldoon and Stanley Kunitz.
The healthy Jim enjoyed gardening, walking, traveling, smoking his pipe, drinking his Beefeater’s Gin or glass of single malt, going to movies, watching The Sopranos, the Master’s, the last game of the World Series, Wimbledon, March Madness and the World Cup. He ordered shrimp with hot garlic sauce, calamari in red sauce, trout amandine, pizza with frutti di mare with a half-bottle of wine. He preferred Monet and Van Gogh, listened to Jacques Loussier Plays Bach, Vivaldi, Britten, Mahler, Telemann, Delius and Herbie Hancock.
He loved to say, “It’s you and me, kid.” All too soon, it would become “You and me, kid, and dementia.”