28 September 2013
A strange kind of Awareness
like becoming aware of how little we really control our lives
The last few days have been interesting. For the last half of the week I have been having my blood pressure taken at least once per shift. Every time the results have come back showing that I am throwing a high blood pressure, anywhere from 170 diastolic to 180, 184 and 190. This morning I threw a 209 and that was before I had to take Excedrin and a Claritin for my sinus headache.
I inquired as to why suddenly I am having high blood pressure readings. I was told that they're concerned about my having to take so many Excedrin for sinus headaches so frequently. I realize that my allergies include house dust and mold, there is not much I can do about those. The only thing I can think of is this building is old that there must be a lot of dust it in places like heating radiators and mold that is in out-of-the-way places. I traditionally get sinus headaches when the weather changes, I am very used to this. However, while in this building I have had many more headaches than I used to before I lived here. Therefore I have been dipping into the Excedrin and the Claratin and whenever possible, and as needed. I have always been taking these medicines for at least the last 5 to 7 years for these problems. However, I have had more of these problems in comparison to other facilities that I've lived in, including my own home.
What I discovered this morning was that there is a concern that they might have to put me on a high blood pressure medicine. The tone of voice was such that they had no idea that I used to be an a low-dose of blood pressure medicine ever since I was about 45 years old. My doctor placed me on it as a prophylactic measure, saying that it is better to head off a problem and wait until one develops with age. Here for all this time I had thought that I was being continued on these medications from before him and to the hospital and nursing care. Apparently from what I'm told this morning they had no idea that I have been taking those medicines and therefore they had not been giving me any. I am concerned now that they have left this slide until suddenly they consider it a big problem. I'm just hoping that the weather will cooperate and not give me more headaches and that I don't have to continue taking the medications that I have been using to relieve the pain until we can make sure that I don't stroke out.
Once again I am shown that even though everybody thinks they know what's best for me, nobody is taking the time to learn what I have done in my past so that they can continue offering me the best care possible. Nobody seems to listen to what I say as they think they know what's best for me. And the thing that drives me crazy is well known, is being willing to listen to me they are believing they are in charge and that they know best for me when at the same time they may actually be marching me along towards an accidental problem that they never considered that they were causing even more problems.
I've always thought there is an unanticipated downside to being taking care of in nursing care, in that the tendency is to assume that my particular care requirements ought to be just like everybody else's. In fact whenever I speak up telling about my own particular background, I always notice that people take on an aura of being patient and allowing me to finish speaking, but not listening to anything I say. This is the kind of care that scares the bejabber's out of me. Nobody is purposefully setting off to do me harm ,and yet t he overall format that they believe they are doing the best to their ability, is exactly what's going cause me harm. Very scary.
Yesterday I was wrested early from bed right after breakfast and given my once every 3 days shower. This is much earlier than the other CENAs usually get around to doing it, as a result I was done with the shower and in my wheelchair by 10 o'clock. I'm only good in the wheelchair for about 3 hours, after that my body begins to ache from not being properly fitted in the wheelchair. I knew that my knees and lumbar were going to start aching soon, so I went upstairs and got in position to receive my lunch in my lap shortly after 12. I finished lunch in short order and was in the process of taking the tray back to the meal cart so it can be taken back down to the kitchen and cleaned and stored for the next meal. Then I indicated to several different CENAs on the shift then that I was ready to be removed from the wheelchair and placed back in bed. I sat in the doorway to my room making myself ready and watching all the traffic that the CENAs were doing finishing up gathering meal trays. For the next hour and a half they all watched me, saw me as they went about their rounds, and made a big point of looking busy and at the same time ignoring me. As it got close to 1 o'clock and then quarter after 1 and then 1:30, it appeared more than obvious that I was being studiously ignored and I was not going to be helped in the bed anytime before the end of the shift.
This is not new, I have seen these same individuals do this many times before. They know that I begin to get sore and sitting in chair for more than 3 hours is difficult, but apparently they don't mind my discomfort as long as they don't have to do any work.
When the 2nd shift came on I was immediately approached as to was I ready to get in bed yet. I indicated that I was, and within 10 min. I was removed from the chair placed back in bed and properly adjusted to where I could enjoy myself again. I mentioned to one of the 2nd shift CENAs that this has happened several times before. She inquired as to who was on that shift, I replied with the names, and she said that is exactly why she refused pickup any hours on that shift - she indicated that she has always found those individuals very lazy and unwilling to do much of any work in the last hour of their shift. She does not want have anything to do with them or be associated with them whatsoever. I have to agree, in that it always seems to be the same individuals who preside over this sort of activity. It gives a rather mixed message as to why they are here, to earn a paycheck or to enjoy their shift and the people they work with offering some help while they are in nursing care.
In fact I see that several different levels in this place the same sort of mixed message, that people are not really clear on why they are here and what they're supposed to be doing. I have seen this in many other places before, people are ready to come in to work and gladly accept the paycheck. But they don't really buy into the type of work and have found the easiest way to go through the motions and not run afoul of the rules to put themselves into a threatening position. When I used to work at the Juvenile Court we referred to those people as deadwood, they are good at taking up space, and give the appearance of doing their job. But they are always the first to go home
Between the shortsighted understanding of my medications and what I was taking before I came to nursing care and what they are continuing to follow-up with me on now, and the gross disregard on the part of some of the senior staff as to what they are willing to do and not do, I feel very exposed and not very safe as long as I live in nursing care.
I have a birthday coming up on Monday. Suddenly it is taking on overtones way more than it ever used to have. It used to be that another birthday could be seen as a milestone, a passing all of calendar landmark this signifies another annular passage, and a new and different point of view. Now I look at it even differently, more as if I was lucky enough to survive the poor administrations of yet another hierarchical system that has been placed above me in such a manner that it is now responsible for taking care of me. I am not that positive about their abilities and the surety of the care they are offering. In other words every day that I don't find myself harmed I feel lucky. I've always thought that I would last to live to be a ripe old age. Somehow lately I feel that if I do reach the ripe old age it will been with a tremendous amount of good fortune rather than decent care.
It was one thing to be diagnosed with Multiple Sclerosis, and I was able to adjust to come around to working within the limitations of that disease brings with it. But it seems like such a damn shame to have the possibility of other damaging effects due to the inadequacies and inabilities of some of the people that are trusted for care of taking care of me.
This brings me to another point that I've been noticing for the last several weeks. That even though I speak of my background and some of the things that I have done, most people tend to be polite, paying minimal attention to the quality of things I'm saying, and otherwise discount everything I have to say is if I was just some tottering old fool. This is very difficult. I get the feeling that they know what they're talking about only as far as the end of their own skin, and they have no idea what more they could be doing, or no idea of the damage they are actually doing. With some people I do feel akin to the human community. But with most people I get the feeling that before they can accept any part of me it has to go through the filter of their mind and what they think is important and real, without ever considering that I'm I have my own set of important and real that mean something to me and does not have to please them whatsoever.
This is the exact last place I thought I'd be at this point my life. It's interesting to be forced to interact with people as a part of receiving some of the care I need, and yet have to wade through all the incomplete and misunderstandings that are the right and territory of someone whose twenty something years old. I've already been through this once, is rather tedious to have to wade through it again, waiting for the other person to begin to wake up and bring along their newly discovered understanding.
It's late September and the weather is just fine today. The sky is mostly blue with very high clouds, the temperature in the high 60s to low 70s, there is a gentle breeze wafting in from the south. There is a feeling that one has no idea how many more days there will be like this, so the attitude is to get outside and enjoy as much of this can be tolerated. For now I'm able to appreciate this moment, in this part of the season for as long as I can tolerate it. More later.