Dignifying Dementia (5 page)

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.”

His tears began to flow. It was a secret river that broke through all the dams. The river of pain that everyone carried inside.

Henning Mankell

Photo: Ellen Graham

Living in Hilton Head meant we could take advantage of the mild, snowless days of winter. Our routine included arduous activities like walking on the beach, shopping for groceries, going to movies on Friday afternoons, keeping appointments with dentists or doctors, attending performances of the local theatres and orchestra and going out for lunch. Jim read. And we watched reruns of
Law and Order.
While Jim was more passive and wanted me to drive, nothing else in his behavior was shocking. Although he did have that disturbing little tremor.

Because of the internist's admonition about the checkbook, I watched Jim, and believing he could get better, I bought into the ‘use it or lose it' notion. But when I encouraged or ‘nagged' him to write or sign checks or add items to the grocery list, tears came to his eyes. When I bought a Scrabble set, he didn't want to play more than a game or two. When I asked him to edit a draft of something I had written, the process was painstaking for him, but I assumed it was either the content or my writing style causing the discomfort.

It's important to understand that living in Hilton Head violated one of Jim's few cardinal rules, which was: “We need to live within 100 miles of a major city.” When we first moved to Hilton Head, we made excursions to Charleston, Gainesville, Atlanta, Jacksonville, St. Augustine, Aiken, Chapel Hill, Winter Park and Orlando in search of major cities and realized what we had done; we were living near charming, delightful ‘towns,' not ‘major cities.'

We knew we needed to spend part of every year near New York City. Like other snowbirds, we would migrate north when the snow melted to avoid the oppressive heat, humidity, mosquitoes and potential for hurricanes and to get a culture ‘fix' to last us through the winter. We bought a tiny
pied-à-terre
half an hour from Manhattan and hired our first ever interior decorator. We dreamed, planned and behaved as if our lives were normal. We spent the summer inhaling the culture and then drove south for the winter filling our days with more walks, more movies and more mild days.

Come spring we headed north again. Once there in our little kitchen, we selected our adventures from the
Arts and Leisure
section of the Sunday
New York Times
. We went to New York Philharmonic rehearsals, concerts at Alice Tully Hall and at the Merkin. We went to on, off and off-off Broadway Shows. We saw foreign films in town, went to MoMA and the Metropolitan. We discovered the Jupiter Symphony Chamber Players. And, of course, every trip into the city included a visit to a bookstore. We also saw our families.

Two years after the pronouncement by the ER doc, Jim was having difficulty finding the precise word he wanted to use, no longer drove and walked more slowly, but he did walk, and he climbed onto buses and trains. At home he did the laundry, made the bed, put groceries away, folded towels, read the paper, used the remote control and went for strolls. Always a restless soul, the notion of retiring was sitting badly with me; I wanted to find a part-time job in the city for the following summer, and happily I did.

Amazingly, a friend of a high school classmate of mine called and said he was looking for a pair of hands to help organize an extra conference for his conference group. I was delighted to have a three-day-a-week job in the city. I loved the work, the people and being in town. On some weekends, we drove up to the Berkshires to hear the Boston Symphony at Tanglewood. When I was at work, Jim did what he loved to do: read, clean, walk and read some more – although he repeated, “It's harder to concentrate.”

But all was not well. Not only was Jim having difficulty finding the right word, he also was having difficulty remembering and processing information. We had planned to meet for lunch in town, when Jim phoned me at the office and asked, “Which train ticket do I need to use to come into town? Which one do I need for the return trip?” He could not remember which of the two tickets lying side-by-side on the kitchen counter was for the train into town and which was the one for returning. We had talked about the tickets several times. I had even marked the full-fare and the off-peak tickets for him. He seemed unable to grasp the difference between the two.

That he phoned was remarkable. I was taken aback because he had always avoided using the telephone. Apparently the ticket problem was sufficiently important for him to make a call. While he sounded calm, I was not. When I hung up, after explaining once again which ticket to use for each trip, I should have reveled in the fact that he knew how to dial and get the answer to his question; instead, I was weeping.