Dignifying Dementia Read Online Free PDF

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