I don’t know why I felt a need to have someone else tell me to go home and take care of myself. I guess I have always been better at keeping the rules than making them. During this time, I kept thinking someone would say, “Ok now it would be best for you to go home and let us work with your husband on his own.” This conversation was long in coming. Having worked in the medical field, I am well aware of the need to protect patients’ rights, to let them determine their own course through any illness. However, I think they should at least be presented with the options, and the possible consequences of those options. Again, I think part of the problem here was the upheaval occurring due to transition from one rehab facility to another. But I cannot lay all of the blame there.
After about a month of my being the ‘live-in-everything’ for Strokeman, the head nurse swung into action by first moving us to a room across from the nurse’s station. (I imagine they thought I might need some incentive to leave him in their care.) After that, she pulled me aside and informed me there was going to be a meeting with all of the practitioners involved in his rehab in which they would be instructing me to go home and rest and let the staff take care of him. I asked her why this had not been done before, and did not receive much of an answer. I think it was a case of people assuming they knew what the reaction would be before they even tried. I think they thought I would refuse to leave, when actually I was just wishing someone would give me permission to do so.
When the meeting came, instead of it being a discussion of what would be best for Strokeman’s recovery, it was more of a chastisement of him for the way he was exhausting me. It irritated me. Why were they chastising the man with brain damage for not making good decisions about what needed to happen? Weren’t they the professionals here?
Their instructions to me were that I was to go home every night to sleep, so that I could come to his therapy sessions and learn what I needed to know in order to take care of him at home. Up until this point I had been taking a break during the rehab sessions to eat, rest, and take care of the business of life that was crumbling around me. I readily agreed.
Each evening I would leave around 8:00 to go home to sleep, and then get up in time to get back to the hospital to help him get ready for therapy. It was about this time that he began to complain if the therapy was too early. He would refuse to go down to the therapy room if he had not managed to “finish” in the bathroom. He would refuse to do certain tasks or to work with certain therapists. I could tell he was getting weary.
I found myself having to try to make decisions about his complaints and try to negotiate between him and the therapists. I didn’t know what I was doing, and was so tired I couldn’t ask questions without crying. I couldn’t tell when to give him his way and when to push him to do what he didn’t want to do. In reality, there is no pushing Strokeman to do what he doesn’t want to do, and everyone was getting pretty sick of trying. I was frustrated with him because I saw this opportunity for rehab as such a gift from the Lord. I felt that we should be taking advantage of every little thing they had to offer.
On the other hand, I was frustrated with the therapists for being pretty unimaginative when it came to working with him. The speech therapist, especially, seemed to only have one system of dealing with his cognitive difficulties. He has never been one to play games, whether they be word games like crossword puzzles, or computer games. I could certainly see the benefits to these things, having used these techniques to teach my children. To Strokeman they were insulting and tedious. He called them mickey mouse work. On the other hand (Tevye) he wasn’t capable of much else.
What I wanted was one person I could go to who would be able to help me figure out what was the best thing to do in any given situation. This person did not present herself. I know that part of my inability to make decisions had to do with just being in uncharted waters, but the majority of it was the fact that I was grieving some serious loss. I simply did not have any cope left past just getting up and facing the day. Not only had I lost my husband in many ways, but when I returned home, I found that for all practical purposes I had also lost my children. They weren’t sleeping at home any more. They were gone. It was unbearable.
Getting rest did help. It was the end of the school year, and I also began to go to some of the performances that my children were in. I began to work to connect with them again. I would spend the night at rehab with Strokeman on Saturday night so that I could leave and go to church on Sunday. It was hard to be there without him, but I knew I needed to be under sound teaching and I needed the fellowship of my church body.
Strokeman complained that he wasn’t sleeping. He complained that no one was checking on him. The nurses and techs would give me a report when I came in every day about how many times they had checked on him, how much sleep he was getting, etc. I guessed the truth was somewhere in the middle. The middle. That is where I seemed to take up residence. The middle – with people pulling me in every different direction-while a voice inside my head was screaming, “Can’t you see I have nothing left to give?”