Number One

I had to try to find a way to let myself describe the residents (ladies) with whom I work, without violating any HIPA laws, so I came up with the wonderfully original (not) concept of numbers. There are 7 ladies living in the cottage in which I work.

One is an approximately 57 years old female whose sisters are her guardians. One lives in Louisville and enjoys talking to One and visits from time to time. The other lives in Florida and the last phone # we had for her has been disconnected. (That's better, though, than the gent from the other side of the cottage whom they took on a home visit to his family ... and no one was there, as in the place was deserted!) But I digress.

One has a g-tube, where nutritional 'fluids' are passed directly to her stomach, bypassing the troublesome throat area, as she has had a barium swallow and it has been determined that she has dysphasia. Dysphasia is a condition where a person does not swallow correctly and it messes up parts of your digestive tract. One gets several drip, or 'bolice', feedings during the day and nothing at night. One can be sneaky, reaching into her clothing to open one of the ports on the tube, which allows the contents of her stomach to flow back out...kind of like vomit but without the nasty taste. But the smell MORE than makes up for it. Additionally, the liquid is corrosive outside of the stomach, usually necessitating a bath to wash everything up again. On rare occasions, when One gets angry enough, she will pull out the tube intentionally, and then a trip to the hospital for reinsertion follows.

A last note on the tube thing...in our daily log, we are not allowed to say "Nurse hooking up One for her g-tube feeding," as someone felt this would be demeaning to One. So I write, "Nurse beginning One's afternoon enteral nourishment".

One also has a condition called PICA (pike-uh), which means she will try to eat things that are not really meant to be eaten - pieces of paper are her favorite targets, although they have from time to time found bits of string and crayons in her tube. I prefer to call One a "non-discriminate ingester" which means "she don't care what she eats". At least she has stopped digging and eating her own excrement. (There are several residents in the facility's other cottages that do.) Other people with PICA seem to prefer a certain type of object or material. There is one lady who is PICA for metal, so they removed cabinet knobs and things of that nature.

Aside from the fact that One gets nothing in her mouth other than the occasional breath strip, the worst thing someoe could do to her would be to make her sit still for more than 15 seconds at a time. I have seen her sit and transfer her possessions from one side of her body to the other for hours while on the couch. At other times, she will do that for a few moments, then get up, dance, shake her finger at a cottage mate, shake her butt at the television, go back to sit down and transfer things all over again. A few weeks ago, they took One to get her hair cut. Apparently it was on once they told her to sit still in the chair. One came home with bruises and scratches all over her body.

Let me clearly state that One was not abused here. She is PICA for her own hair and will frequently and without warning run her fingers through her hair, give it a tug and then place her fingers in her mouth. Once they had to take her to the dentist to get a hairball cut out from amongst her teeth, because it had become entangled so badly. As it was, because One did not sit still, she came home with what I call the 'concentration camp' haircut...extremely short and choppy. (This is in no way meant to minimalize anything experienced by anyone who has been in a concentration camp or held as a P.O.W.)

One gets up between 5 and 6:30 a.m., usually of her own volition. Her first bolice enteral nourishment session is at 7, so she has to be up and dressed by then. One and her staff person (she has her own staff, due to the PICA issue) are on the go, from one classroom or community experience to the next, one feeding to the next until at least 4 pm, as are all the ladies living there, rain or shine, sick or healthy.

This is one issue that is a real contention between home staff and administration/therapeutic professionals. If we (as "normal" people - whatever that means) are sick, we call in to work or have our parents call in to school to tell those institutions that we will will not be present on those days. Our people (as the home staff calls the residents - well, at least I do *lol*) do not have that luxury. Congested or not, irritable or not, One goes out each and every day - unless she is sufficiently injured or sick enough to warrant a trip to the hospital.

I will have to continue this another day. I've just seen the daily paper for our city, which mentions the facility at which I work...and I am angry. I am close to 'waxing lyrical' and writing a letter to the editor of the local paper.