This blog is a continuation in a series I am writing about my husband’s brain injury. If you wish to read the story in order, go back in my archives and find Begin at the Beginning…all the ones in the category brain injury tell my story. Some are longer than others…they come in chunks of time…sometimes quickly and others much slower. Thanks for taking the time to read and being patient as I walk through the one of the toughest parts of my life again with new eyes to see how God used the broken pieces to create something beautiful.
It didn’t take that long for Bill to begin walking. The guys in physical therapy wasted no time in having him up and on his feet. Once on the rehab unit for a week, he was in his wheelchair anytime he wasn’t in therapy, but shortly he was weaned from the chair to a cane. The cane was used as a weapon and was quickly taken from him after he swung it one too many times at a therapist.
Next was a canvas strip that wrapped around him on the outside of whatever clothing he wore. In order to be up and out in the halls he had to have The Belt. All the patients wore them when in the hallways. It was a precautionary device so that if they lost their balance the caregiver who was walking with them would already have a hold on them preventing the patient from hitting his/her head again. I was given strict instructions on how to put it on, and where to hold it when we walked. There were rails along the walls and Bill was to hold the rail with his left hand while I walked to his right holding the belt with my left hand mid-back. That way he had support on both sides of him and my help with balance if he needed it. Sounded easy enough.
The problem was that Bill hated The Belt. It was a symbol that he was not normal. He still didn’t want people to know he was a patient. Putting it on became a battle…if he wrestled it away from me, it quickly became a weapon and it hurt like the dickens. Reminded me of getting a spanking. Trying to get it back always resulted in a pretty good chance of catching a strip or two across my face. He was bigger than me and stronger, and once he had regained his balance this became a significant issue. I could no longer win many of the physical battles. Think two- year-old child’s tantrum in a 21-year-old man’s body. Fortunately for me, most days, he had The Belt on when I arrived in the afternoon. His sitter would be walking him and just pass him over to me when I got there.
It was about this same time that he began his paranoia. It is one of the stages head injured people can go through. Basically he believed that everyone was against him and trying to kill him. He trusted very few people. He watched over his shoulder everywhere we went. He whispered to me about anyone we passed in the hallway, “Shhhh. Don’t say anything. This lady coming this way is making notes about me.” When the woman came by he would smile and say, “Hello. How are you doing today? So good to see you.” It was kind of funny in a sad way. Like we were playing spies, and sneaking around the hospital trying to appear normal. I tried to imagine what his brain must be thinking waking up each day with different people around him…people he couldn’t remember from the day before. Always coming in and feeding him, and making him go to therapy, giving him pills etc… I think it would be quite scary. The people he remembered from before were the ones he trusted. That was mostly me and family.
This is when the middle of the night phone calls started at home. I would wake up groggy with the phone ringing off the hook. I answered in my sleepy voice, only to hear Bill whisper, “Help me. They are going to kill me.” And then hang up. The first night he must have called every 15 minutes always the same kind of message. I would try to talk to him, but he always said, “Shhhh. They are listening.” Then he hung up. At first it was alarming, because he was so convinced he sounded truly scared to death. He made these calls to anyone whose number he could remember. Our pastor answered one of them but only heard breathing, and I think it was due to the fact that Bill didn’t recognize his voice so he didn’t know what to say. One time Ray went to check on him because Bill sounded so frightened. When he arrived at the hospital Bill said, “Hey dad. What are you doing here?”
The paranoia carried over to the medical staff as well. I was watching a nurse give him his pills and saw him palm them. (He used to do sleight of hand magic in high school, so he was good at palming things.) I told her he didn’t take them and she said, “yes he did…I watched him put them in his mouth.” I looked at him and he had this look like ‘don’t tell on me’ but I just said, “Show her.” He opened his hand and there were his pills. He tried to act contrite through his mischievous grin. He was adorable, like a little kid who had been caught who was trying to charm his way out of trouble. The nurse was stunned. We checked his trash can and found several doses there, as well as others stashed around the room. He just knew they were trying to poison him. From then on there was a note on his chart that said in big letters WATCH HIM TAKE HIS MEDS.
The poor sitters who had to follow Bill around didn’t stand a chance. He thought they all were out to kill him. He didn’t want them to hold onto The Belt because that put them too close. Because of his volatile reaction to The Belt, the team came to an agreement that as long as he held onto the rail no one would have to walk too closely too him. The sitters stood a few steps behind him and basically didn’t allow him to get out of their sight. This proved to be a much better solution and brought much peace until one particular sitter. This young man was a nursing student. He came regularly during the day and there was never a problem, but Bill had sleep issues and so he walked much of the night because he could not be still at any time. He was agitated. So he paced the hallway. This particular sitter was a bit effeminate and Bill, in his paranoid state of mind, thought the guy was making a pass at him. He called me very, very upset in the middle of the night. He said, “There is a guy here watching me. He is following me everywhere. I told him to stay away from me and he won’t.” I explained that that was his job, and told him, “he is keeping you safe.” He hung up on me.
The next day Bill was pacing and frantic. He walked in circles and looked a bit like a caged animal. He was still so very upset that I went to our case worker and explained that it might be better if that sitter only came during the day. She informed me that he would no longer be sitting because in the night Bill had thrown a wheelchair, and a long dining table at him. Yikes! Fortunately Bill’s aim was off and the guy was quick to dodge flying objects! The combination of strength, paranoia, and volatility was a dangerous one. Not to mention the mindset of a two year-old, and a short term memory that was non-existent.
For me, navigating this strange place I found myself in was draining. Each day brought different issues to the surface and the combination of all of it was overwhelming to me. I was finding my way, and dealing with one day at a time. Thinking of the future was pointless, yet I had the feeling that if I could just get him home…in a familiar environment he would be good and that all this stuff would fall away. It never occurred to me that if he were home I wouldn’t have the help of all the medical staff and I would be on my own to handle his tantrums and outbursts. It would be a while before that fact became reality.