Lil's Najopomo #1 - a weak fumble
Posted Nov 2, 2014
It's nearly 10 p.m. on the 1st, so I'm still in the frame.
This has been a rough day. I developed chills in the early afternoon, and then became feverish, spiking at 103.9F, and only missed being "sent out" to hospital by one decimal point.
I'm a lot better now, after being wrapped in cold facecloths and bags of ice -- fever is down to 99.5 -- and the nurse has started me on an antibiotic, but I feel weak and tired.
So this entry is a placeholder. Hopefully, more interesting journals will follow in the coming days.
Why My Journals Have Been Edited
Posted Jan 24, 2014
I have asked the moderators to remove all references to two fellow residents, and to change a couple of names. I took this action at Ladera's request because there was the potential to do harm to the institution in which I dwell.
In the US, the Health Insurance Portability and Accountability Act of 1996, widely known as HIPAA, controls how and under what circumstances a person's medical records may be shared. This link goes to a summary of the law in fairly clear English:
Basically, HIPAA holds organisations such as hospitals, doctors' clinics, nursing/rehab facilities and insurance companies responsible for keeping patient information confidential. The original intent was to protect people such as those suffering from AIDS from being stigmatized publicly, losing their jobs and so forth. Like so many good intentions that convert to statutes, however, the law has grown tentacles and inserted itself into so many aspects of patient care that patient care is, in my opinion, sometimes hindered.
There was a time when an aide could enter a room, lift the chart at the foot of the bed, and know within minutes the state of the patient's metabolism, progress, state of mind, recent history and prognosis. Instructions on what to do with the patient would be right on top. Now, if the aide wants to know what to do with the patient, they must go to the nurses' station or the medical records office. Even if the information is at the other end of the hall.
Here's what happens, as a consequence of obeying the law and every possible ramification of it that lawyers might have to answer for in a court of law. At the end of shift, aides and nurses "give report" to the incoming shift as well as write out what happened (if anything) with each of the patients under their care, which latter activity is called charting.
In giving report, the outgoing staff walk down the hall with the incoming, stop at each room and describe what's going on. When the aides are both the regular staff for that hall, then of course the patients will be familiar to them, and the report will be quick and painless. If one of them is new, then it will take longer to share the report. If both aides are unfamiliar with the hall, well, that's why I hate the holidays.
If you ask my room mate if she's OK, she'll always tell you she's fine, even if she isn't. The regular staff know this as a matter of course, and check her over. The unfamiliar aide asks and sometimes takes her at her word. The unfamiliar aide, mark you, is operating in a state of apprehension about getting tasks completed and not hurting anybody, about preventing falls, about the screamer three doors down, about answering the call lights, and not forgetting the patient who needs help getting off the toilet and may be confused enough to try and do it themselves. I notoriously insert myself into the scene if I think the aide is misled by my room mate's stoicism. My words are almost always accepted, but a couple of times I have been rebuked because HIPAA.
Would that the aide had handy charts right there in the room with the patient!
But somebody might snoop. And so it is forbidden.
So how come I know so much about what's going on? I don't really. That is, my knowledge of the Ladera medical universe is limited to the parts I have come into contact with. Usually it's easy to tell -- pits and scars of brain surgery, parkinsonian tremor, paralysis of one side of the body, evident mental confusion, or a missing limb and regular trips to dialysis. Very often patients tell each other all about the illness or event that brought them hence. In the case of several room mates, the family simply suck me into their circle, include me in the pizza order, tell me all about my erstwhile room mate. And sometimes I just hear it spoken about.
HIPAA is aware of this and has a section called "Incidental Uses and Disclosures." It absolves the institution of responsibility for cases where word gets out unavoidably because of hall activity, information sharing by relatives and the like. This is where I fall, me and my blogging about life on the hall. The staff can't talk, but a patient has no legal restriction on her volubility.
There exists the possibility that a litigation-minded relative might come across my journals, recognise the person under the pseudonym, and decide to pick a fight. They might be hoping for a cash settlement. They might just be convinced that their relative has been exposed and that Ladera is liable under HIPAA. Even though they would turn out not to have a case, it would be extremely unpleasant for the institution. There would be lawyers, their fees using up the funds that could be used for bacon and repairing the disability bus. The publicity would be bad. If a formal complaint were made to the state, then an inspection would ensue. The administrator would not like me any more.
And so I have voluntarily complied with Ladera's request to remove whatever is easy to identify as a particular patient. But I'll keep writing. Carefully.
Ladera Chronicles: My Political Life
Posted Jan 21, 2014
The facility is in the grip of a severe cold, a virus that has swept through the ranks of staff and residents alike. My hall, South Back, is one of the worst affected; next door, Betty has gone on oxygen, and Louise's cough is so bad that an x-ray was ordered up for her. I caught the cold over a week ago and, while I'm not symptom-free, I know I've got over the worst of it.
I have immured myself in my room for the duration, but tomorrow there is a residents' council meeting which I must attend... because I am running for president. Tomorrow I and my distinguished opponent must present our case to the snuffling and coughing ranks of our fellow residents, even before we get on with complaining about the food.
Never in my life have I run for office. No student council in school, or position in local government. I became a member of the Historic Preservation Board (a zoning committee of sorts) once I moved to Lincoln, but I merely had to submit my name and bona fides to the County Council in order to be appointed. No posters with my face on them were involved, and certainly not voting.
Now I have posters in the corridors, and residents are voting. Well, some of them are.
Is this truly to be taken seriously? Is the post of president worth anything more than the wooden gavel the winner gets custody of, and the privilege of guiding the meeting? I can't be any squeakier as president than I have been all along, I don't think. I spoke for Gretchen when her glasses broke and months went by without anything being done -- heaven knows Gretchen can't speak for herself. This position is not exactly a life-changer.
There is something I think I might try to accomplish, but bringing it about is going to involve hunkering down in the long grass and waiting for opportunities to come to me. Whether or not I am elected. Being president would give me a bigger face, is all.
The other week L got an award. L is Lonnie, and he is a veteran who served in World War II, in the Navy. To call the ceremony impromptu is an understatement; the hospice group arrived and convened with whoever happened to be in the vicinity, which included me, a few therapists, a handful of residents and the activities staffers. I hadn't realised Lonnie was under hospice care, but of course. He was more animated than I had ever seen him. While he couldn't remember what ship he was on or indeed which ocean, he was aware of the significance of the ceremony and beamed as the retired navy guy pinned a badge on his sweater and handed him a framed certificate. We applauded vigorously.
And for a few days thereafter, until I sequestered myself with the cold from hell, I would shout "Hello sailor!" at Lonnie when our paths crossed, and he would grin back at me. It gave me an idea.
Ladera Chronicles - More Time With R
Posted Jan 1, 2014
There've been a few changes in the population. After Della left we got a nice lady from the skilled unit in her place. She is less work for the aides than Della was, can dress herself and get up the hall to the dining room on her own power. Over on the north side there were two deaths right after Christmas, and those beds were both filled by gentlemen from Skilled as well.
The chiefest entertainment in recent days has been watching Jx keep trying to break out. The fire exit doors at the end of each corridor are armed with alarms against just such an eventuality, so when Jx opens the door you'll see two or three staff jog down the hall while somebody announces, "South Back, check your exit door!" The aides re-secure the door, Jx is escorted back up the hall, looking surprised, and there will be another announcement, "South back door is clear!" Jx considers his situation and then heads for the exit on C Hall and the whole excercise is repeated. He did this no less than five times on Sunday, alternating doors on each attempt. I would watch the aides hurry past my door and admonish him as they reset the door, and each time Jx was surprised to hear that he shouldn't do this.
Christmas in Da Home
Posted Dec 27, 2013
You can't dress this one up and make it pretty. The holidays is when your regular helpers are away. It's when the kitchen staff are dedicated to leaving early. It seems as if only the Hispanic Jehovah's Witnesses, who don't believe in Christmas, are content to carry on in their full shifts.
My surviving relatives are all on the east coast, and my friends are also far away, all but a few. One came to see me yesterday, so I have not spent the time alone. I have made sure that I have plenty to do -- things to read, art projects to complete, this website to expand. I really don't want to whinge, but nothing brings home the news like a holiday. I'm institutionalised.
Ladera has tried to dress it up. And there are lots and lots of very good people who give us residents time; they come and sing carols, bringing children who hand out cards they made in class with construction paper and glitter. There are entertainers in the day room, giving it all they've got, willing to look ridiculous if it will inject a little cheer into the moribund classes.
I can't tell you how weird it is to be on the receiving end of this stuff, to be the old woman in the bed at whom the children stare. When I was in high school, our music teacher selected a group of us to spend a cold day going to several places like Ladera to perform. I can muster up a memory of the elders for whom I played. Several beamed at us; even more simply leveled a cool gaze as if to say, "So, entertain me already." And of course there were always the bristlecone pines along the sides of the room, their bodies unmoving and their stare enigmatic. We students were glad to leave, although we were not rude or contemptuous of our audience.
Several days before Christmas, Santa and Mrs. Claus visited Ladera, and the announcement came over the PA system: Come on down and have your picture taken with Mr. and Mrs. Claus!
I ask you -- when was the last time you were sober and had your picture taken with Santa? I bet your age was in single digits. So why would this be thought to be appealing to old people? I thought I was safe because I was bedridden that day, but no. Having exhausted the population of the day room, the Clauses and their photographer decided to fan out and visit all the people still in their rooms. Which I didn't think could possibly happen until they stood at the entrance to my room like American Gothic in red polyester. I submitted to the photo op but then demanded one of my own.
This is what Annie Dillard was talking about in that essay from Teaching a Stone to Talk. You can't take the comedy out of the human condition, even where we humans think we're being sublime. These wonderfully well-meaning people gave up an afternoon to put on those red suits and wigs to mix it up with the dying. To cheer us up. And it worked for me! I got it, the irony, I really did. Kim, the head of Activities, she knows my temperament. She's the blonde in the doorway, watching my reaction to the Clauses. But imagine how it was for them that day, looking amongst the bristlecones for somebody they could amuse. Or walking down the hallway and encountering some form of suffering in every room they entered. For that gesture I might as well give up some dignity, and sit in Santa's lap and ask for chocolate and world peace.
(cross-posted in my blog at lilatladera.com, with photos)