I’m tired of training nurses.
Perhaps I should view each new nurse as an opportunity for improvement. I do. I find that the perspective shift doesn’t remove the reality that I’m simply tired of it. Every time a new nurse starts, we wonder if she’s going to do a good job. And every time a new nurse starts, we have to train her on the big things like Catherine’s seizures and the little things like how I’ve arranged the clothes in Catherine’s drawers so it stays somewhat orderly. With each orientation, I open the drawer of Catherine’s dresser and show how her shirts are filed by color in an attempt to bring some order to what is inherently chaotic in our lives. Rarely are they as neat and organized as I want it done or I would do it myself. Yet I’m grateful for the help to put away her clothes, which the nurses certainly don’t have to do. I don’t feel like I can complain or correct. In fact, the order of her drawers metaphorically expresses the order in our lives – or not.
Think about it… imagine having some random person in your home every single day of every single week of every single month for the past 9 years. We didn’t get nursing until Catherine was about 3 years old, and as much as I can’t conceive how our family would function without the help, it is a significant intrusion to have to accept. Brian and I could not work and go to school without a nurse helping us. It’s that simple. As nice and helpful and important as these people are, they are not part of our family. They are more like a growth on the side of our family. For example, even as I’m writing this, a nurse sits behind me finishing her report, and I’m mindful I need to turn and get report of Catherine’s night from her.
I used to wonder if the agency trained them to think about the place they take in a family. Brian and I dampen our disagreements when nurses are here, though on occasion, they have heard us fight. He detests that and I don’t blame him. Imagine what it’s like to want to share joy with your spouse and see a nurse first instead. Think about a nurse being the first person you see after a bad day. I remember the days after I lost my job. Our nurse knew something big was going on and I didn’t want to share it with her. That’s a little odd to say the least. I mean, she was in our home every single day for hours! And she couldn’t really comfort me yet I’m certain she wanted to make me feel better. All nurses want to help. The truth is that they wind up a centerpiece of your life, and somehow they stay on the outside at the same time.
So, when I think about training more nurses, yet again, it’s not just about the location of syringes and the physical manifestation of Catherine’s seizures. That’s the easy part. It’s about how we wind up absorbing them into the family. Even though they’re actually outside it.
Training nurses seems a bit like training anyone new that comes into our life. I’ve recently started dating someone new. It’s impossible for him to understand all of Nicholas’ history, and it would be overwhelming if I tried to dump it all at once. But without knowing all that we’ve experienced, he doesn’t understand so many of the choices that I make as a parent to Nicholas. Every so often now when he asks a question, I just look at him, and then he says, “I know. I know. Pick your battles. It’s on the list of things to teach the kid.” Nicholas is missing so many skills that are “normal” for a typically developing kid of his age, but are just things that he isn’t able to do, refuses to do, or we didn’t get around to learning. I’m so thrilled that he is going to school every day, doing school work, and participating in a part time job that I really don’t care if he can’t make his own peanut butter and jelly sandwich. I find it exhausting to have to justify the choices that I make to someone who hasn’t been around to see the whole story.
And, of course, none of that begins to cover teaching someone how to interact with him, which is usually pretty easy these days but can be challenging at just the right moment. And knowing what moment we are in is nearly impossible for even me to predict.
Training new people is hard, whether they are caregivers or just people who want to interact with us. Ella has started to just spend time with her friends away from the house so she doesn’t have to explain her brother to people. Sigh.
These are so many bits and pieces that are challenging that I never could have anticipated. This is one for sure.