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.”

 

This is the final extract from Part One of DIGNIFYING DEMENTIA.