The Language of Caregivers

This is the 12th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

I’ve always operated on the principle that I don’t need my parents or some other person who is familiar with me to train someone as my caregiver. I’ve prided myself over the fact that by my descriptions alone I can get someone to do for me what I need. Over the years I’ve taken several out-of-town trips where total strangers were my caregivers and I was able to explain to them whatever I needed.

The shift changes at St. Vincent Hospital at 7 a.m. and 7 p.m. so you get two complete new sets of nurses and caregivers every 12 hours. Except for my buddy Cory, I don’t recall ever having the same nurse or caregiver twice in the entire week I was there. That can be frustrating because just when you get one of them trained so that they know how to move you, reposition you, etc. you have to start all over again with a new crew. Perhaps the reason that I liked Cory so much was that I had him three out of the last four days. I didn’t need to go into lengthy descriptions anytime I asked him to do something. He remembered what I needed and how to do it.

However it takes more than good communication skills to get by in these situations. You need to invent a language all your own. I have developed a verbal shorthand of phrases that quickly allow me to communicate with my parents to tell them exactly what I need without going into lengthy descriptions. Phrases like “sleeve tug”, “leg tug”, “strap tug” are shorthand for various common procedures. We’ve even standardized directions to my own coordinate system. Left and right always referred to my left and my right. Up and down a relative to the direction of my head even when I am lying down. So a sentence like “Move my arm up” while I’m laying in bed does not mean raise my arm in the air. It means move it towards the head of the bed (that is “up” relative to me).

When I sleep, I use a variety of pillows in addition to the one under my head. While lying on my back, I have a pillow under my knees. While on my side, the pillow goes between my legs. Nurses and caregivers are generally accustomed to these pillow positions and I have no trouble quickly explaining to them where to put the pillow. However when lying on my side things get a little confusing. With my legs crossed in various directions it’s sometimes difficult to determine my right leg from my left one so I often refer to them as my “top leg” or “bottom leg”. Strangers generally pick up on that terminology easily. Also on my side I have a pillow between my chest and my free arm. I seem to have some trouble explaining to the nurses exactly how to position this pillow. Finally I stumbled onto an idea after two or three failed attempts with one particular caregiver. I said “put my arm around it like I’m hugging a teddy bear”. That did the trick! From that point on that was the first thing I said in describing how I wanted that pillow. After adopting that terminology I’ve never had to tell any of my other nurses anything else to get the pillow in the right position. They always got it right on the first try.

Despite my discouragement over the ruptured ostomy bag I had to move ahead and tried to get up in my wheelchair. Before I did that we tried a couple of experiments where I would set up in the lift seat and just hang there sort of sitting on the edge of the bed. Despite the fact that I wasn’t eating much, when I eat while lying down, I get gas in my stomach and I can’t burp. Raising the head of the bed doesn’t get me upright far enough so the lift was the only way to go. It’s not particularly comfortable hanging in a sling and if I hang there too long my arms start to go numb. On the couple of attempts I had at sitting on the edge of the bed in the lift, I had quite a bit of pain in my belly. Sometimes when I get dangling in the lift at odd angles (and especially if I’m pain) it’s difficult for me to even speak. My head gets all twisted funny or my jaw gets jammed closed as my head flops around.

During those attempts to sit up sometimes the pain was so bad and I would be in such a difficult position I could barely speak. In the past if I was hanging in the lift and discovered something was wrong I would generally say “go back” meaning “we’re giving up… go back to bed… something is wrong.” My mother, God bless her, always tries to fix things and under such circumstances are natural reaction is to ask me what went wrong. When something is wrong I don’t want to have a big discussion with her about the problem. I just want to get the hell out of there and get back in bed! When sitting in the lift seat it’s difficult for me to hold my head upright. You have to push my head forwards, backwards, or sideways to get it balanced just right. Under those circumstances a quickly uttered phrase “go back” could possibly mean I simply want my head tilted back further.

I realized I needed a new shorthand word to deal with this situation. So before we tried putting on my brace and sitting me up I told my parents I had invented a new keyword. If I said the word “abort” it meant “Something is wrong. You need to get me back in bed as quickly as possible. And I don’t have time or the ability to explain what is wrong. And it probably can’t be fixed right now anyway. And we will discuss it after I’m safe in bed and can breathe again without excruciating pain.” With that bit of business out of the way we proceeded to try to get me into my brace and sit me up in the wheelchair.

When Dad tried to put the brace on me it was like someone had put it in a magical machine and shrunk it about two sizes. Normally you have to fasten the Velcro straps on both sides as tight as they will go in order to get me comfortably wedged into the thing. We never even got close to getting them that tight. In fact I had to have Dad loosen them from his first attempt. I couldn’t figure out what the reason was for this disastrous misfit. At the time I assumed that somehow from lying in bed for days my body had gotten out of shape. My spine has two 90 degree bends in it. Perhaps they had gotten further messed up and the brace wouldn’t fit anymore.

We got me into the brace as best we could and forged ahead with putting me in the lift sling. That was uneventful and didn’t cause much pain although it was clearly abnormally uncomfortable with the brace acting strangely. Normally after I’m sitting in the chair would have to scoot my hips back by grabbing me by the pants belt in the back and pulling me up and back. Because the brace was unusually loose, the belt didn’t fit in its usual hole and scooting me back didn’t work very well. I couldn’t sit up very straight because of this. I had to sit in a sort of slumped position.

I expected my arms to be weak but they were even more useless than usual. I tried propping my right elbow upon the control box in its normal position for driving my wheelchair and it didn’t even come close to feeling right. Normally my elbow has very little range of motion and my hand doesn’t grip very well but I could tell my elbow was even more limited than usual and my hand felt swollen and stiff.

The only good thing was that it didn’t feel uncomfortable to have the brace on over the ostomy bag. I only sat up for about a half-hour or 45 minutes so it wasn’t much of a test however as far as it went it was reasonably successful. I went back to bed, got a shot of morphine, and went to sleep.

It wasn’t until I got home a few days later and tried to get up in the chair again that I begin to realize why nothing fit and why my arms were so stiff. We will explore that mystery and many others in the coming installments.

In our next installment we will order room service for solid food and have more visitors.

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