28 August 2015
I'm back, when I've really been nowhere at all
After reviewing my blog site http://behindtheseeyes-john.blogspot.com and a bit of honest reevaluation, and discovering that I can link the blog posts to Facebook, I am once again writing to the blog.
Since I receive so little human contact in this facility ( family and friends rarely come around or call on the phone) and this blog has generated minimal input from others, I decided to investigate Facebook for a while. FB does have more immediate feedback, although there are times when even FB is flat. For awhile I was exploring making movies on my computer and posting those on FB, but I soon found that when I wanted to (for the sake of creativity) make videos over a certain minimal length, FB wouldn't accept them. Free hosting only goes so far.I don't really want to compete with Kitty videos either.
There is so little to do here in a nursing home. I really am not rehab material either, since my condition is not expected to rehabilitate or get better (that is not the understanding of how MS works). When I first got here I was once a day having appointments with physical therapy and occupational therapy. Other than making me tired ( I used to have to nap in the afternoon for an hour everyday)there were no changes in the traditional physical therapy sense of demonstrating incremental positive changes. After a month of daily strapping my feet onto a bicycle crankset connected to a computer console, while still seated in my wheelchair, my measured output was the same on the end of the month as on the first. So Medicaid decided that in the interest of no medical changes, and fiscal responsibility, to stop my daily bit of large muscle movement. My concerns about moving my muscles and joints were discounted. I was told those were not an issue, but if I wanted they could put me on blood thinners to make sure my circulation would not be impaired and arthritis medication in case my joints seized up.
I am told that the CENAs can perform range of motion on my legs daily, while I lay in bed. Everyone of them tell me how they were trained in how to do this during their certification classes. The nurses tell me how there is even an order for R.o.M. daily in my file, but rarely does it ever happen. There are two CENAs of larger than average size who do R.o.M. On me, but they don't work every day and often they are too busy working on staff shorted schedules per administration operations. When I do get some range of motion applied, my legs and ankles have a warm glow for half an hour afterward. Its wonderful, I can actually feel my legs, as if they were a part of me again.
Today, once again, the facility in its wisdom has scheduled too few CENAs. Last night on the overnight shift there was only one, today, first shift there are two. Which meant that there was no CENA that could be spared to give/supervise my shower today. I am still getting used to only two showers per week as normal expectations, but when the facility goes into save-their-cash mode, I am one who gets to feel like a scrunge ball. Last Spring the facility went through about six weeks of staffing too few CENAs, consequently I was getting one shower per week, some weeks none. Bed baths don't count, especially when I can't scrub my scalp, washing my hair.
I have had a neighbor, a real prize to have in the room next door. He has some sort of closed head injury that shapes his behavior in a negative way. Since the facility hides behind HIPPA laws like mother's apron, there is no way to determine exactly what is the cause for which behaviors. He does exhibit some closed head injury behaviors. For example he refuses to use the call light to request some help, even though many instances of training for this have occurred. His special technique is to begin repeating a phrase several times, gradually reducing the modifier words while ramping up the volume, 'til he begins screaming as loud as he can. The phrase is repeated quickly as if no response were expected, there are sometimes added modifiers inserted of the expletives deleted sort, the type that are often overused for greater emphasis so often that any emphasis has leached away long ago. The tone of voice used often contains a mix of angry frustration and just a touch of fear. This elicits an immediate response but the CENAs and nurses have grown weary of this animalistic form of requesting their help. Last night, at three AM, when there was only one CENA scheduled on the floor. He went off about something that was worth it to him that it meant all of us nearby were awakened while he fussed in his usual fashion.
It is now two in the afternoon, the neighbor is going at it again. Something about having only one pillow, repeated several times over. Inserting the fact that he “only has one fucking pillow” and after repeating that tidbit several more times, he breaks into admonishing no one in particular to grow up. Repeated several more times escalating in volume and ferocity ending with shouting, “Grow the fuck up!!” Now that the incoming shift CENA has responded to him, he is now pleasantly using his electric razor for the fourth time today. Before he got the razor, and was shaved by hand by the CENAs, he never showed a heavy beard before. I think he enjoys the playing-with-toys feature of the shaver.
For this kind of care my retirement stipend was claimed by the facility, saying that this is the amount set for my care by the state, who monitors medicaid. $738 per month I have been charged for this form of mistreatment. When I complained about the poor quality food and the lacking care features, I was told that the state sets the amount. In a way absolving anyone here from responsibility for such outrageousness.
I have been a resident here long enough to have seen several state inspections of this facility. Always the CENAs are reflecting the attitude of the administration, saying in hushed tones, “The state is here”, “they're in the lobby” or “They're on the second floor” with that tell-tale tone that implies no one is safe, we're all gonna get swept up in the net. Beware! When I was employed as a county worker in Lansing, I had many interactions with various state workers from all sorts of departments. I think the tones of implied omnipotence toward the state is similar to that given to various federal systems. Something about the overwhelming greater power of state and federal systems compared to local operations strikes fear and loathing into those on the outside of such organizations. The CENAs often said they hoped the state investigators would come and speak to me. Somehow there was this unspoken understanding that through speaking with me the truth about this place would come out. I got the feeling that if the state would just figure out (through me) what was really going on around here, then things would straighten out. Many of the CENAs would seek me out to find if the state had been to see me yet.
Finally during one inspection that lasted over many days, a state investigator spent a couple of hours with me, over two days. As a result there have been no changes. Not one. Showers are still skipped due to lack of enough CENAs, the food is still lousy, and barely varies. Certain nurses still maintain that I am getting enough care services, or if I am not to just speak up and they will look into it. Looking into it means using tough sounding language but there is no follow through. The CENAs all know which nurses have any CENA background at all (two or three, I think) The rest seem to look down on CENAs and distinguish the work relegated to CENAs as beneath them. These nurses are great at delegating to the CENAs in a very dismissive fashion. Its easy to see in person or hear over the two way radios the facility uses.
On one of these state inspections, as many residents as possible were gathered in the main floor day room, in which the state inspectors held a meeting to assess residents satisfaction. Having had prior experience with state workers, how they too feel trapped in a non-responsive, nearly intolerable system, they have figured out how to tick through the list of chores while actually doing very little that can actually be useful after they are gone. I have seen it happen many times, in various circumstances.
One state worker lead the meeting, asking for any comments regarding a list of items she moved through quickly. At one item, Eight fingered John, raised his good hand signaling that he had an issue on a certain item. When called upon to elucidate, John tried with what few abilities he still had available to him. John struggled and stammered, stopped to find just the right word, drooled a bit then tried to regain a composure that had not been available for years. It was obvious that John had an issue, and it was important to him. He wanted to bring up his input, but speaking was no longer one of his forte's any more. John was dependent on the understanding and careful deliberation of others to get his point before he himself would ever get to it. If you spoke his thoughts before he got to them he was immediately grateful, it could be seen on his face. This is often the method that many people in nursing homes use for communication. It truly does utilize the other person to effect full communication. It is a special person that can effortlessly do this with another.
The state worker showed her mettle as well as her lack of ability to work with the residents, after John had begun his moment to participate, when it had become uncomfortably obvious that he was probably never going to reach a statement on his own, she cut him off saying that we could come back to this later, at the end of the meeting. You could feel the energy leaving John upon hearing this. He was ramping up to make a comment as he had been invited to do. The sense of deflation in the proximity of him was palpable, it felt like a defeat, probably like a thousand other little defeats he had sustained prior to this.
It was obvious that John had sustained a stroke and was nearly aphasic, but not fully so. His lower lip often hung loose, saliva often pooling onto his shirt, he never seemed to be able to close his mouth to swallow in a timely fashion. He often was appreciative when one of the CENAs or other staff members would deftly use a napkin and wipe the accumulation from his face, on its way to the gathering puddle on his shirt. You could sense that in those moments he felt positive at the small gestures done for him by others that confirmed he was still a member of the human race, in spite of his limitations.
When that state worker showed the degree to which she was willing to engage the residents on the issues on her fishing list, I leaned over to Big Bob sitting next to me in the back of the meeting room, and said, “ let's wait until everyone clears out after the meeting, to see just how much John's issue is going to be attended to.” He agreed, adding that he bet there was not much to show, on her part.
Sure enough, John's issue was never approached, everyone cleared out and Bob and I got to the lobby in time to see the state workers gathering together to walk to their car(s) joking and deciding which watering hole or restaurant they were going to frequent after such a grueling day, much like so many other state workers I have known many years ago out of town on a fact finding mission.
John's issue is circumstantially resolved, as he died a couple of months ago. His concerns are now moot. The state inspectors still enjoy power and status far beyond anything they have earned. The neighbor is once again using his razor insuring that no stubble has crept on on his chin since the last time he played with the razor. There are only two CENAs on staff this afternoon, which means I won't have any interactions with anyone until dinner is delivered. Right now Pandora is playing quietly on my cell phone, drowning out the neighbor's incessant radio tuned night and day to the country station featuring those Naishvill cowboys in the big hats that all wanna sound like Tennessee.
Just another lousy day in Nannyland.