Friday, March 30, 2012

Asking for a Bite…

How exactly do you eat? Yes, I know: food enters the mouth, jaw goes up and down, teeth do their thing, and so on ... But I figure that your nurse or assistant or someone physically handles the food. So if you're faced with a plate of, say, steak and potatoes, do you literally ask specifically for a bite of potato, or a bite of steak, then another bite of steak, then a drink, etc.? In the same way that someone else might ask for the salt to be passed? Or is it just kind of obvious that one piece of food follows another?

I had to laugh a little bit when I read this comment. Not because it was anything silly to ask, because I know people are just curious, but because I never thought of explaining my eating process. I'll give a little background first.

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-brush my hair/teeth, scratching an itch, moving my arm a certain way, changing positions, range of motion, bowel/bladder cares etc. I have 24 seven nursing care and PCA's that help out four hours every day. My life is nonstop with lots of interaction between me and the people helping with whatever I need. Right now I have six nurses (3 on days and 3 on nights) and two PCA's.

Questions have come up about how I manage my care. I direct all my own cares, so I'm constantly telling others what to do (in a polite way). By now I think I should get paid for all the managing and directing I do. When I need something specific, say changing positions or a drink of water, I just ask. This is the way I like it and the official meaning of "directing" my care.

Because of "the system" and the way charting is set up, my nurses are supposed to ask me throughout the day if I need things; this may include water, stretching, PRN medications etc. It also includes pain management. If I do have pain when they ask most of the time I have to rate it on a 10 scale and then describe it (i.e. aching, throbbing, stabbing etc.). Sometimes when my nurses ask me things it can get a little irritating to me because the way I see it if I have pain or I need something I'll just tell them or ask. I'm also a little stubborn so occasionally if one of my nurses says "do you have pain?" I may say no even if I do so I don't have to rate it or describe it. Now to some that may seem crazy to lie about a simple thing like that but when you have questions being thrown at you 24 seven from all different directions, it can get agitating. 

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 and has routines except they don't think about it 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.

As far as eating goes, it's the same type of thing. Whoever is with me at the time feeds me what I want. Sometimes I just have them go around the plate, eating one bite of each thing after another in a clockwise motion. This way I don't have to ask every single bite what I want because that can get to be a little much. Otherwise, if I want something specific, like two bites of one food in a row or a drink I'll ask. This has seemed to be the best way to eat that works out for both me and the person doing the feeding.

Like I said, most people have their own ways of doing things and routines in their life that they're comfortable with and that make it easier. I challenge you to start thinking when you're brushing your teeth, getting dressed, eating, etc. if you do it the same way every time. It will be an interesting test and I bet you'll find that you have a routine you didn't know about. For me, I continue to direct my own cares, asking for and requesting every daily need from dressing to bathing to water to food. 

If you found this post insightful or discovered a routine you didn't know you had, send me a comment; I'd love to read what you have to say!



Anonymous said...

I tOtally love this post because it gives insight to people how paralysed people do things. I also get irritated at times when my nurse and pca keep asking questions. Most of time I just eat whatever they feed me unless I want something else :) jialiang

Rose said...

With all of the kids I have I realize I clean the toilet seat EVERY time I go to the bathroom, it's just a wipe down but I have to do it. BTW, coming from someone who has helped you in the eating department, it really is not difficult to follow or understand your preferences and I've never thought you were crazy........well, maybe with the saurkraut.

Nick Doriott said...

I had to laugh when I read this. I like things done certain ways too. My nurses will sort of tease (joke) me about it. Its kind of funny though!

Nick Doriott

Steph said...

I don't think I'll ever remember which direction you like your teeth brushed, that one was hard to stick in my brain for some reason!! This was a great post, Jen---helpful to others who don't think about the little things.

Elizabeth said...

"occasionally if one of my nurses says "do you have pain?" I may say no even if I do so I don't have to rate it or describe it." - I do the same thing! I feel like if it's not that bad, and I don't need anything for it, it's not worth telling them lol.

Colleen said...

Hi Jenni,
What a great post. I am a creature of habit particularly in the morning. Let the dogs out, feed the dogs, then it's a bowl of cheerios & a little meditation time for me.
I had not thought about the teeth brushing..... I am sure I will be thinking about it now though.