Elizabeth Tierney’s husband Jim was diagnosed with dementia in 1997, and died nine years later.
In extracts from her new book, she describes her dawning realisation of his condition – and the struggle to care for her husband as he gradually lost his faculties.
The story begins just after an otherwise healthy Jim has an unexpected panic attack while driving across a 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the casual emergency room diagnosis, Jim gave up driving, developed a tremor in his finger and became indecisive and withdrawn.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.”
[...]
Four years after Jim’s initial diagnosis, I was exhausted. Nothing in our lives was normal anymore. If I ran an errand by myself or went to a yoga class, I would have one eye on my watch, or would roll up my mat halfway into the practice. If I did stay through a class, I would be asking myself how this illness had happened to us and desperately wanting my old Jim back. When I left him alone at home, I was always in a hurry, fearful that he might become agitated or confused; I wasn’t concerned about his hurting himself or wandering off.
Several times I had returned home to find him holding his head saying, “I’m going to my funeral,” or staring out the window looking for a car, for his car or for a red car. Because he had difficulty concentrating, he no longer wanted or needed time ‘to read.’ Hoping it might help, I bought CDs of poetry, and I ordered a tape player and audio books for the blind. Not only was he not interested, he was unable to push the oversized buttons on the machine; he had nothing to keep him occupied.
He was confused, and I was on a short leash and irritable. A telemarketing call at the wrong time, a brief wait at a checkout counter, a letter addressed to someone else – everything annoyed me out of proportion to the event.
It was easier to run errands together, but that was problematic, too. If we drove to the bank or to the store, he reprimanded me for driving in the wrong direction, just as he had on our final trip south. He tried to open the door of the car when it was in motion, or to unbuckle his seatbelt when I came to a stop sign or red light. I was on guard and on edge.
Inside a store, his behavior was equally unpredictable; while I was at the checkout counter, credit card in one hand, emptying the cart as fast as I could with the other, he might bolt for the door. When I was at a teller’s window or at the post office counter, he would demand to see the manager. I completed my transactions as fast as possible to catch up with him, steer him back to the car or simply walk after him.
[...]
I tried to learn what to do by watching him. For example, we had two large built-in mirrors in the apartment: one was along a section of wall, the other a wall-to-floor mirror behind the bathtub. I had noticed Jim seemed upset by the reflections at sunset, or by the light when he walked by those mirrors. What was he seeing? How did he interpret what he was seeing? Did he recognize himself? Was it someone else? I covered both mirrors, one with a drape and the other with a shower curtain. It seemed to help.
I stopped watching television on the day he yelled, “Fire!” He had been in the bedroom, and the flickering lights reflected on the wall in the living room must have frightened him.
I also had noticed that, when Jim walked around the apartment or outside, from time to time he raised his foot to take a bigger step, as if to avoid something in his path. I paid more attention. The bigger step seemed to occur when there was a shadow, or a different texture or color on the ground or floor.
At home I tried full spectrum light bulbs, hoping that they would make a difference. I couldn’t do much about shadows of clouds or trees on the grass; however, I removed the patterned bathroom mats and replaced them with a big, slip-proof, solid-colored mat that matched the color of the bathroom floor and the carpet. It seemed to help. While I worried about the possibility of his slipping, with incontinence, ‘washable’ also mattered.
I also stopped speaking so quickly with him and learned to wait for him to process what I was saying. I would say or ask something slowly, then wait and watch his face for an answer or a reaction – no more quick decisions or brilliant repartee.
While Jim didn’t always know my face, he always recognized voices on the telephone. I would hold the receiver to his ear; he would hear the voice and say the correct name. A friend of mine had been diagnosed with Alzheimer’s; her husband noticed that she, too, recognized voices on the phone.
So, when Jim was particularly upset because he had no car, no home or no money, I would phone one of his children or our accountant and put Jim on the line, hoping that a familiar voice might ground him. By the end of the call, he was usually calmer.
His son, Kevin, called him once a week without fail. Jim immediately recognized the voice and said, “Kevin,” and then chatted away – often unintelligibly. One time after finishing the call, and I had hung up the phone for him, Jim said “Good man”; another time, he said, “Good-bye, Son.”
Kevin visited once a year. The first year, when Kevin walked in, Jim’s smile lit up the room. We all went out to lunch and then for ice cream. The next year, when Kevin came, we tried the same thing, but Jim would not get out of the car. The following year, there were no more car rides. Instead, Kevin helped the aides and sat by his father’s recliner and held his hand, while Jim muttered in a language largely unfamiliar to us all.
Elizabeth Tierney’s book Dignifying Dementia is available now, published by Oak Tree Press.
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