I depend on nurses 24/7 to meet most of my needs and do cares for me. They work 12 hour shifts; 7 AM to 7 PM and 7 PM to 7 AM. I have seven different nurses at this time, but it can vary depending on whether they work full-time or part-time with me.
It is difficult having someone around and constantly with me all the time. Sometimes I just want to be alone with no one in the house, but I know that will never be as long as I'm on a ventilator and have a trach. The nurses don't have to be right beside me all the time though. We have an intercom system throughout the house, so they could be out in the other room while I'm in my room. If I need them I just call their name and they should be able to hear me and come in.
They are usually out in the other room at night when I'm sleeping, unless they're doing cares on me. The night shift proves to be the hardest for people because they have to stay awake the whole time in case something happens. One problem that I have sometimes is if they accidentally fall asleep.
There are many times where I wake up in the middle of the night and need something. I'll call for them but if they don't come right away I first assume there in the bathroom. If after a couple of calls they don't come, I start to panic and think they fell asleep, which is usually the case. Sometimes they just simply don't hear me if they're doing something else or running the water or something like that, but not every time. If they are asleep, they eventually wake up if I yell loud enough and long enough and come into my room.
I'm trying to think of some sort of call switch that I can use. But that would require them to reposition it and get it in the right place every time they repositioned me. I'm definitely going to look into that though. Unless it happened every single night, I wouldn't fire someone over accidentally falling asleep because it's really hard to find good nurses. I just have to let them know that that's not okay and to try their hardest to stay awake so I can stay safe.