2012-2013
As his confusion made it harder and harder for him to navigate, Dad built a storehouse of anxiety, fear and insecurity. By narrowing the walls of his world, he managed to get by. He finally retired, but instead of flourishing into the time and space that created, he drew the curtains and brought his world even closer.
In retrospect, his coping was quite masterful. It is only now that my brothers and I see how long he had been managing his shifting abilities without showing them to us. We had attributed his increasing reluctance to travel as a choice not to visit. We assumed he was playing less golf because his shoulder had gotten more stiff as arthritis settled into an old injury. His diet became even more limited and he was always watching his weight. He had never learned to cook, but his limited diet was becoming increasingly limited and he was losing too much weight. In fact, all of these “choices” were adaptations to his changing abilities.
The weight of his burden was immense. We watched the subtle changes. We offered more and more support, but also continued to live our own lives. When he stopped responding to emails, we returned to calling with updates to share our stories and engage him in our lives in any way possible. We mailed cards that, months later, I discovered that he would read over and over again – reliving our stories as new news each time. We wanted to believe that Dad was living his own life too. Eventually it became clear, at some point he had stopped living and had begun surviving.
The details of daily life had become tedious. Eating, dressing, shopping and walking were his only activities – and they were all-consuming. What had at one point been the security of ritual and habit became obsessions, rightfully so. Without the ability to learn new information or adopt new behavior, the only way to stay safe was for him to repeat previously adopted behavior. His world was shifting – it was hard to pinpoint the source or the causes, but things were becoming hard. He seemed only vaguely aware of it and only periodically annoyed by it. My brothers and I patiently told him where to put away the dishes in his own house when we were with him and began to help with medical appointments and bills. He lightheartedly told stories of putting clothes on backwards and going back to the grocery store 4 times in one day to buy soap because each time he got there he was not sure he wanted it. He could not find slippers that were at his feet. While he seemed aware that he was once able to make meaning of the led lights on a digital clock and knew that the device told the time, he was unable to translate. He would point at the clock and ask, “what time is it?” He would nod at my response, gracefully accepting that I had access to information that was no longer available to him.
My brothers and I began talking, wondering and worrying. He was a grown man and should be allowed to live his life. It wasn’t our place to tell him how he should live. Surely this was not the life that he had envisioned for his retirement. In his narrow world, there was not room for much activity or relationship. He had a visit from one of us monthly, so he was alone most of the time. Were we supposed to intervene? We settled on “watchful waiting” – hoping that it would be clear if/when we should step up and step in. It was.
