24 September 2014
This morning began like so many others. Sleep evaded me any further about five thirty in the morning. After lying with eyes closed for nearly half an hour, I noticed that I was rocking and rolling on the inside. Okay, enough closed eye time, the time for wakey wakey has arrived.
I switched the iPod over to NPR news, found the bed controller and adjusted the head end of this hospital bed into a more raised position. Groping with my left hand for the on/off switch of my CPAP machine, I cut the power to my nightly assistive breathing device. Relaxing in my now elevated position, I listened to the morning news.
I began to think about the upcoming breakfast meal, remembering having read the menu, that this morning's meal was to consist of a baked Denver Omelette (onions, chopped green pepper and ham) was the main entrée. I was looking forward to something a little more substantial than the standard scrambled eggs, which are a misnomer, in that they are not complete eggs but only egg whites mixed with yellow dye to fool the recipient into believing that the missing yolk is still there. No amount of foolery can hide the fact that these particular scrambled eggs are always off taste and substance. I had several hours of preparation to get my mouth ready for a Denver Omelette.
When the meal came, disappointment once again rode on its appearance with the meal. The main entrée consisted of the pseudo-scrambled eggs containing bits of ham covered with one slice of melted American cheese. Not quite what the menu had promised. But I was not surprised, for this is the standard way that communications are skewed here in this facility.
There was the usual small bowl of rice crispies accompanied by the 1 cup serving portion of whole milk in its nifty little sealed, waxed cardboard, container. I remembered speaking with the new dietitian just a few weeks ago, wherein she was quizzing me as to why I did not eat certain foods that were sent up to me. This question was tinged with a slight bit of emotion and tone of voice that gave the impression that she, and possibly the entire administration was considering the fact that I did not eat everything they sent me as some sort of insult that I did not like what they were serving.
I rather swiftly disabused her of this idea stating that I find eating too much milk product always lends towards overproduction of mucus, as milk tends to do. And I have been weaned for several years now. In spite of the USDA food guidelines, I don't need that much milk anymore. Although I do like rice crispies now and then, I do not eat them every single day. Perhaps if there was some other liquid to float the crispy kernels other than milk I might consider it. The brand-new nutritionist did not receive this information kindly. Apparently those who determined that certain food choices are just not for them are suspect of being surreptitious, subversive and not to be trusted, just because they're not like everybody else.
Newsflash sister! Look at me! Red Hair, fine Celtic skin that sunburns even through a shirt,a lifelong case of Celiac disease, and now MS, and you are unhappy that I don't conduct myself like everyone else? Really!
What brought this inquisition on was unknown. There was a strange tone regarding this whole discussion when she and another of the first floor administrators had been seeking me out one morning. They found me in my wheelchair headed for the elevator, making an effort to go downstairs to go outside. The two of them insisted on speaking to me privately, an impromptu meeting was proposed, we could go to my room which was now empty. Once it all gained positions in the room the two of them stood to inquire of me the questions that were on their minds.
Right from the beginning this did not have a good feel to it. I felt more like errant third-grader who had been banished from class until he had visited with the school principal. The inquisitional tone of the entire situation gave the impression that I was under some sort of attack through fact-finding. Just the mere act of me seated in a wheelchair and them standing, looming over me gave the very strong impression that I was in a position of subordination. It seemed that nothing I could say could get all of us on the same level. It was almost as if their method was to impress me with their power, and to make sure I recognized I had none.
The nutritionist asked why I did not eat the gluten-free waffles that the kitchen had gone to lengths to prepare for me? (I found this to be interesting because the kitchen had stopped sending up those waffles months before this woman was hired as the new nutritionist - obviously records have been kept regarding my previous eating patterns) I indicated that there was nothing wrong with the waffles, but every single time they were accompanied with a single serving package of Smuckers imitation maple syrup, which tasted heavily of corn syrup with just a dash of maple flavoring. In my mind that taste in mouth feel is very negative, more similar to the liquid medicine I am to take daily. Since they are going to keep sending up the awful synthetic syrup, the best thing I could do was to not eat the waffles. Rather than inquire what the problem was way back then, the kitchen just stopped serving them. Apparently, according to this woman's question, there has been an unspoken canker regarding this refusal, growing just under the surface of awareness for a very long time. I viewed this bringing to light their concerns to be a good thing, a chance for healing, an opportunity to once again work with one another. By the tone of her voice and the following responses, she showed that the kitchen staff had been considering my refusal of their production to be an insult. It seemed as if they wanted to be unhappy with me and now is the first time it was being brought to my attention.
When I indicated that for most my life I have really not enjoyed imitation maple syrup. That, I have often gone out of my way to find real maple syrup made from tree juice, that which is been boiled down lovingly hours on end by dedicated individuals. I preferred grade B because it's a little darker and more flavorful than the traditional best selling grade A .
The nutritionist's considered response was: "We don't have the time or the energy to go chasing all over for your little esoteric tastes". Whoa! It seems as if I've been served notice. The veritable slap in the face by a left-handed glove, the age old challenge. Not to a duel this time, but see who is going to win this little skirmish, the nutritionist and the kitchen staff versus whether I will eat their production or not.
Esoteric tastes indeed. Is it my fault that most of the rest of the people will dumbly, and without complaint suffer to eat whatever is placed in front of them? Is it my fault if I recognize better tasting items as opposed to others who let such distinctions slip right past? I am amazed that no one considers the folks who are not so inclined. Is that sufficient reason to continue producing low quality food?
Later this morning one of my more favorite nurses came in bearing my morning meds. She brightly asked how I was this morning? She sensed the laconic tone in my voice and asked what was wrong? I told her of the breakfast entree, how it was not as advertised. How defeating it is to be constantly treated this way by the kitchen and the new nutritionist. I had hoped that a new employee might have a different attitude toward the job and her response to the residents. I commented that it didn't take very long for the same attitude that pervades this organization, to corrupt her as well.
At this point she told me that she had offered her resignation. This coming Monday was to be her last day. She said that she is sick and tired of this entire organization being so warped about providing care on the least amount of cost basis. She indicated that she thought the problem came from the venture capitalist firm that bought this care provider out several years ago. I have heard of this from many other workers here. Lots of good workers have left to do the same work in other facilities.
I have seen and heard of this same issue from many others. The cutting of costs has become so severe that many caring CENAs have reluctantly left the employment here for other places of employment. They say that it pains them to not have the time to fully interact with the residents as they would like, rather just the barest minimum of care is given. Because of cost saving measures make staffing enough CENAs is deemed to be too expensive. Less workers on the floor means limited time with each resident in order to get to the next one.
There is a sickening feeling to realize that for the next years of my life, this is going to be the constant underlying reason determining the sort of care I get. So far my input has been often not heard, certainly not acted upon, probably diminished as to relative value given to the comments I make. I can't speak to how thrilled I am to experience the next round of words and actions at contradiction to one another.