I have 24/7 nursing care because of my trach and ventilator. If my injury was any lower, I wouldn’t have nurses. Many times I’m glad that I’m on the ventilator so that I can have nurses to do all the care that comes along with being a quadriplegic. I don’t think I would be as healthy or come as far as I have without nurses. On the downside, I’m never alone. This is one thing that I struggle with. Even if I’m alone in my room, there is always someone within hearing distance of me in case something happens.
Sometimes I get frustrated with always having someone by my side, constantly talking and doing stuff for me. It is hard to always think of the positive side of having nurses and people around me. For my own safety, I would never want to not have nurses just for the sake of being alone. In the chance that my tubes were to pop off I wouldn’t be able to breathe and put them back together myself. It’s just a feeling that I wanted to share.
Since I am completely paralyzed from the neck down, I require daily assistance to help with my every need. This includes bathing, dressing, eating…more specifically brushing my hair/teeth, scratching an itch, moving my arm a certain way, changing positions, range of motion, bowel/bladder cares etc. My life is nonstop with lots of interaction between me and the people helping with whatever I need.
I do have specific ways I like things done or to do things. Just like anyone else would have their routines, so do I. The way I do certain tasks may seem particular and tedious, but I just think about the fact that everyone does things their own way without giving it a second thought as they’re doing it. For example, when someone brushes my teeth with my electric tooth brush they start on the bottom left, then go to the bottom right, then the top left, then the top right. I’m sure many of you brush your teeth the same way every time, you just don’t realize it.
This is where the situation comes in again about never being alone. It’s not just the feelings of needing personal space or time completely to me. Just the simple fact that it’s not going to change and I have to accept it no matter what. There are times I’m hesitant to call a nurse over because I don’t want to constantly ask for assistance or be too much to handle.
Although on the other hand I also think about how my caregivers must feel being able to complete tasks for me. It’s their job to assist me and I know they wouldn’t be here if they didn’t want to be. My appreciation goes very deep for everything they do for me and I give them a lot of credit for catering to all my needs. I realize it’s not always easy and I’m grateful for those who chose this career path in order to help people like me.