Mike had been living in the nursing home (one of the few in this area who accept ventilator patients) for a few months before we met. I'm sure there must be some nice ones out there, but this was not one of them. The people assigned to care for Mike had such huge language barriers and he had such complicated needs that the amount of stress Mike was forced to live under tired him. He slept alot. Another reason for sleeping a lot is the practice adopted by a lot of facilities of giving people multiple psychotropic medications (to make their lives less stressful there, of course). These medications were listed as PRN, in other words... not to be given unless he asks for them. The State asks facilities that accept payment from them to operate with a certain standard of care. One of those things would be to make a visual contact with a patient with a certain interval of time. For a number of reasons, this is rarely done and impossible to prove. Well, nearly impossible. Mike had an issue with a nurse who had given him so much medication that he could barely hold his head up, let alone type. She silenced him.... most likely to make for an easier shift for herself and others. In his impaired state, he was able to message me and ask for help. I went up to the nursing home as soon as I could and told them that Mike wanted to see his medication chart. There is a lot involved in what all we had to do to get this issue resolved. This is one time when I wanted to call the police, but Mike was not wanting to because of his very real fear of retaliation. Our first goal was just to keep him safe, so I stayed until the drugs left his system. After he had his strength back that's when he went about proving it happened. Between the two of us, we WERE able to prove that it not only happened to him, but to all the residents on that hall. The nurse was fired.
After that event the direct care workers were hostile. The administration heard their complaints and made a stipulation. They decided that whenever Mike was to receive any care from their staff, I was to step out of the room. Sounds absurd, right? We complied until we could present enough of a case to get them to change their "rule". Eventually we did but then they just started messing with him other ways. He was assigned direct care people who were the newest hired, they gave him roomates with behavior issues and at time infectious. So if you ever saw a post where Mike was in fear for his life at that nursing home..... it was real.
They dropped him to the floor once, they refused him his food, they gave him cold and inedible food when he complained.
I can think of several times when Mike would have been in jeopardy there had I not been there (outside of the times that he asked me to come). Once, while I was at school less than 5 miles away from him, I knew that the power had gone out. I left class to go check on him and sure enough when I walked into his room his eyes were huge with fear. His ventilator was plugged into the generator but his bed wasn't. He used an air mattress bed. When the power went out, the bed deflated. The rales were up so he wouldn't have made it to the floor but he was scared and hurting and had no way to communicate. He could no longer reach his blowtube (he operated the call light with his mouth) or his computer. I didn't realize all of this when I walked into his room, but I am quick to figure things out. I swapped the ventilator for the bed knowing the vent had a backup battery and max inflated his bed. I rotated the outlet until the power returned.
Another time I was in his room and his ventilator started alarming. Taylor (my daughter) is on the same ventilator as Mike and I know it well. When Taylor was put on her ventilator I had 3 days before she was to come home to learn everything I could so that I could take care of her at home. I read the entire manual, I watched youtube videos, I questioned every respiratory therapist on common alarms and what they mean. Not only did that knowledge keep my daughter safe at home when I had to train her nurses, but this day at the nursing home, it kept Mike alive. This particular alarm isn't from a reading from the patient, it was from an internal error within the machine. It rarely happens, but I remember reading what to do about it. I also knew that if I let Mike know that his machine that was keeping him alive was about to shut off, he would have a panic attack which would actually require more support from the ventilator. I excused myself and got the respiratory therapist. He was not familiar with the alarm code and given my history with the nursing home, he wasn't quick to react based on my opinion of what needed to be done. His idea was to turn the machine off and then back on. I knew this wouldn't work but there was no way to convince him and I didn't want to upset Mike. I did, however, insist on making sure he knew where the ambu bag was before he started and to hook it up to an oxygen tank. I was right, the therapist panicked, I bagged Mike so that he could go get help. His nurse came in and we took turns bagging him until a replacement ventilator could be found. Once all the excitement had settled and Mike was again able to be sustained by machine, he just looked at me and grinned and mouthed "not dead, yet. thanks". Kind of morbid humor, but it suited us. That became another one of our sayings whenever I intervened on his behalf whether at home or in the hospital, he would say "not dead yet, thanks".....
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