Being his proxy

For Mike, losing his ability to articulate what he was thinking, feeling and needing was a huge source of frustration for him.  He loved it when people came to visit him but when it was more than a one on one visit, he would give up trying to be a part of the conversation.  He would tell me that by the time he typed something out everyone else would be on to a different topic.  I mentioned in a previous post that in order to use his ACD (augmentative communication device) he needed to be lined up to his computer.  When this connection was lost, he lost his voice.  The staff at the nursing home was grossly negligent with training his caregivers of this need.  It was necessary to move him to provide care, it was necessary to move his computer to provide care, but once the care was completed if they didn't get him lined back up to his computer he was mute.  Imagine being Mike for a minute, how do you tell someone that you can't communicate without communicating?  Some days he would spend hours just waiting for someone to come back into his room and hope that he could convey to them what he needed.  Now that you have an idea of what his days were like you can understand why he was so happy to see me.  :)  I could read his lips, I could understand when he needed lined up to his computer and eventually he started asking me to address his needs with the staff and sometimes visitors.  When people were there to talk with Mike, the natural behaviors were to lean some on his bed and to watch him type.  It was also natural to try to guess what he was typing and finish his sentences.  Not much aggravated him more than when people tried to guess his words.  I am no exception to the group of people who did those things.  I showed up one day to visit and he had a message all typed out for me to read (he knew I was coming and wanted to get it all prepared).  In Mike's ever diplomatic way, he addressed all the things that I had been doing that were bugging the crap out of him by way of asking me to help him tell other people what was bugging him.  Of course, I am reading his note and realize that 1) he was a non-confrontational kind of guy and 2) he really did want me to speak for him.  I tried it out on staff first.... that went about as well as expected.  But when he asked me to say something to a family member...... that was almost comically ineffective.  One of Mike's ways of dealing with people guessing what he was going to say while he was typing was to use that huge vocabulary of his and start using words that most people wouldn't even know what meant, let alone how to spell.  He would look up at me while they were reading what he really wrote and wink.   This was just the start of what all he would end up asking of me to say for him.  He trusted me.  He knew that I would do and say exactly what he needed me to even if I didn't agree with him.  Here's an example of that one..... during one of the hospital admissions some issues were just not getting resolved and we were both getting angry.  During one heated discussion with hospital personnel, Mike motioned to me to read his green screen (that's what I call it when he brings up the program to communicate.... because it was green).  He had typed out a phrase he wanted me to say.  I read it and shook my head no.... he intensified his gaze at me until I finally agreed to do what he asked.  This is what he wanted...... while we were really pissed off with the care he was getting and I was in no mood to play nice with them, he wanted me to say this phrase "so moving on from here, how can we meet our expectations of one another".  Damned if it didn't work.  The hospital administrative staff visibly backed off.  I mean, their posture changed, their breathing changed, then their words started changing.  Mike was a Master Communicator.  I was a worried stubborn girlfriend.  Just one more of the many things I learned from Mike.