I have a confession…
Writing this blog is hard. My grammar isn’t the best and I have a hard time conveying my thoughts. That isn’t the hard part though. The hard part is confronting my life. There have been a few entries that I just stopped writing. I’ve gone to therapy and I still can’t handle my fears.
The truth is I’m scared. I wasn’t the happiest person before I had my emergency tracheostomy, but I wasn’t the saddest either. I was able to enjoy myself before. I’m not capable of enjoyment now. There is a void now and I’m miserable.
This past week was torture for me. My nursing agency was on my ass claiming to be concerned that sometimes I’m alone. I’m a 37 year old man with a fully functional brain. The agency says they are worried about my safety, but guess what? I’m fucking worried too. That’s why I try to limit my exposure to unhealthy situations.
The whole point of coming home was to regain my independence. It wasn’t to make my home feel like a nursing home. It wasn’t to be a prisoner in my home. It was to try to gain back some assemblance of a life. If I played by the rules of the agency I’d still be on the vent 24 hours a day. The agency doesn’t care about my health or safety. They just want money and to cover their asses. They are running a business and I’m running a life. I’m not a pile of paperwork. I’m a fucking human being.
Thankfully some of my nurses see me as a person. Thankfully my pulmonologist sees me as a person. I would try to wean myself off the vent during the day little by little. I started with trying 5 minutes off the vent. Building to 10 minutes and just kept building. The only problem was my Thursday nurse was by the book and I couldn’t try it those days. So I would be on the vent until she left and then turn I would turn it off. The nurse was preventing me from trying to get better. She made me feel sicker than I was.
During my next visit to the pulmonologist I told her about the weaning and she seemed proud of me. I had passed a huge hurdle and only used my vent when I slept. My Doctor had to fill out paperwork for I could officially no longer have to use the vent. The Thursday nurse was still annoyingly anal though. If I wanted to go outside for 10 minutes she would want to take half of my equipment with us. Needless to say I just gave up on Thursdays. I just stayed in my apartment till she would leave. Even that was annoying. Every time I moved she would follow me. She made me feel like I was going to drop dead at any second.
As soon as my waiver changed and I could use an aide instead of a nurse if I wanted I fired her. Go make someone else feel like a prisoner. Sadly, she wasn’t the only one who seemed to not realize I was a person. Down the road I will explain Nurse Ed to you.
Back to this past week…
I tried to explain to my agency that I no longer legally need to have someone around 24 hours. The waiver that provides my services changed in August. The old waiver said that in order for me to be home I had to have coverage 24 hours a day. The new waiver doesn’t require that. I’ve been trying to explain this to my agency for months, but they still don’t get it.
Last week was also my Mom’s birthday which is always a bad day for me. She also died December 30th, 1998 so the holidays in general are very difficult for me. It wasn’t a good time for the agency to be stressing me out. The stress led to some nightmares and just overall anxiety. The agency that was concerned about my safety was causing more health issues than I actually had. For an agency that only covers 8 hours a day they were being very intrusive of my life.
“Your safety is a priority and being without a caregiver is a risk.” That was part of an e-mail I received Friday.
So Saturday night I was watching TV trying to relax and get all the stress out of me when my phone rang at 7:30. It was the agency telling me that my night nurse called off for Saturday and Sunday night due to sickness and that they had no one to cover the shifts.
Excuse me? What the fuck happened to being without a caregiver is a risk? The agency provides masks, gloves and hand sanitizer in case a nurse gets sick, but apparently it’s all for show. Now on short notice I had to find someone to put me to bed. Welcome back stress! The nurse calling off Sunday night bothered me too. Friday night she was fine, but now all of a sudden she was sick and didn’t even bother to see if she felt better the next day.
I didn’t expect the agency to fill Saturday night, but they also told me they couldn’t fill Sunday either on Saturday. They had a whole day to try and fill it, but they never tried. Yes, the agency is really concerned about my safety.
Now it’s Wednesday night and whenever the phone rings I get a little scared. Is a nurse calling off? It’s been a few days without stress. I’m due for some.
I’m not scared about my health. One day something will happen and I’ll have to fight it again. My agency scares me. I don’t trust them. Some would say switch agencies, but they are all the same. They just care about getting paid and covering their asses.
Isn’t life just a bunch of bullshit?