January and February 2009 were hard months. The doctors ordered another round of IV steriods which did not make any improvement in Sean's vision. He had several eye exams and still his vision remained between 20/400 and 20/800. Sean was now legally blind. He still had some usable vision at close range and could see shapes and shadows. The decision was made to send Sean to the Central Blind Rehabilitation Center at the Hines VA in Chicago, IL for training and rehabilitation at the end of February.
During this time, perhaps due to the increased stress from losing his vision, Sean had several disturbing episodes. One weekend we drove to Jamestown, ND to drop our youngest daughter off to visit her family. The drive is a little over three hours round trip. As we neared home, Sean sat up in his seat and asked, "What just happened? Where was I?" I reminded him that we had just dropped K off with her grandma and were now almost home. No matter how many times we went over it, Sean did not remember any of the trip. The next day, he asked where K was, and still did not remember the drive to Jamestown.
Another day he was getting ready for an appointment and met me at the front door saying, "Ready to go." He was wearing a pair of shorts, sandals, and no shirt. It was well below 0 and snowing outside.
One night as we were getting into bed, Sean lost his balance and fell into the bedroom window, breaking the inner panel of glass. Fortunately, the curtain caught in the window sill and prevented him from falling all the way through the outer pane and to the ground outside.
PT issued him a rollator walker to aid in preventing his falls. The SD sidewalks and roads were icy and snowpacked and he was having many more falls and difficulty getting around. It was quite an insult to his pride to be using a walker, but it did make him feel more safe and steady.
At the doctor's office while making an appointment, Sean said he needed to call the fire department. When I asked him why, he replied, "I'll need to get the day off work." I had to tell him that he no longer worked at the fire department. He asked, "What happened? Did I get fired? What do I do now?" It took about half an hour to bring him back to the reality of where we were and for him to remember that he medically retired the previous summer. This is not an isolated incident. Over the last year there have been three or four times that Sean has mentioned going to work, checking his schedule, etc. It is always heartbreaking for him to hear that he is no longer working at the fire department.
A scarf on a chair in a waiting room set Sean into a trembling fear and mumbling incoherently. I had to remove the scarf to the nurses desk, and we still had to leave the waiting room to another area. He obsessed over the scarf most of the day.
I was relieved that he would be getting some inpatient care at the Hines VA.