23 October 2013

Wednesday

Seeking sanity in an insane situation

Maybe I can try to be like my dog

I had been told, in an off hand way, almost as if in casual discussion last evening by the second shift nurse that sometime in the near future – in the next week or so, another blood test was scheduled for me. That was it.

This morning I awoke before breakfast was brought forth. Cleared the tray table of some of its collected accumulation and put it beside me on the bed temporarily, as the CENAs bring the breakfast just appear holding a full tray. Without much in the way of discussion they stand there impassively waiting forme to make ready a landing zone for this tray. If I take too long or haven't had the place ready by the time they arrive, I get to hear all sorts of comments about how the tray is heavy, they still have a lot of trays to deliver or other comments designed to alleviate some of the discomfort they are feeling. These comments ring with some of the same thinly disguised cover used by many people who want you to know something they believe would make their job easier, but they don’t want to come out and directly tell you.

I had the area clear and still the breakfast was late in arriving. Usually the breakfasts arrive about quarter to eight, with regularity. Except once in a while they are delivered at nine fifteen. No idea why, it just seems that maybe the kitchen got behind or some thing.

This was one of those late days. Breakfast arrived about nine twenty, no comments made. I began to eat. I had just taken the last bite when a knock on the closed door announced that someone wished to enter. The door opens and I recognize the phlebotomist from the hospital, she has drawn blood from me before. She sees the tray in front of me and asks if I have finished eating. Thinking that she was asking as she didn’t want to do her work and bother me, I cheerfully said, “Just took the last bite, come in.” With great disappointment in her voice she indicated that this one is supposed to be a fasting blood draw.

I indicated that I was told last night that there would be another blood draw sometime, but fasting or when was never mentioned. She said that they schedule the fasting blood draws for Wednesdays at this facility's request.

No one ever told me.

She indicated that we will have to do this next Wednesday.

After she left, I asked every CENA who came in my room what about fasting blood draws on Wednesday. None of them had heard anything about it, the nurse came in with my morning medications, I asked her. She knew nothing about it. I mentioned my meeting with the phlebotomist, she didn't know that I was scheduled for a blood draw. Hmmm, it is becoming obvious that one of the big problems I have noticed around here is a big lack of communication. Then i started to wonder if the sometimes late delivery of breakfast didn't correlate to the Wednesday fasting blood draw. Maybe the kitchen knows but the CENAS and nurses are not in on the secret. Strange way to run a facility …

Later one of the physician assistants stops by to check on me and have a chat regarding last Fridays near shower event and being very light headed. He listens to my heart, tells me that the EKG showed no problems. We chat a while, I give him a lot of anecdotal details around the event, including the night before it was a little cool and I was just slightly chilled. I can't stay too warm as the MS makes my muscles very spastic if I am too warm. I was just at that barely not comfortable stage. My body wanted to do a light shiver, but the MS makes that not happen. Instead I get what seems like a start to a shiver but the muscles contract then don't release. But contract even more, like doing isometric exercises. After a thirty or forty second clench my muscles would relax. Maybe two minutes later in would occur again. Another contraction, then hard for another half minute. This happened several times before I went to sleep. I noticed that my muscles ached as if I had been working out too hard or there was lactic acid in them from working. When I mentioned that the CENAs approached me that morning before breakfast, instead of after as was usual. The physicians assistant put some clues together to arrive at a plausible cause/scenario.

Due to the use of my muscles the night before I had probably depleted the glycogen stored in my muscles for instant use. Normally breakfast would replenish blood sugar and provide fuel. The before breakfast start for a shower preempted that and I began to slide into not having had enough in my system to meet the demands placed on it. Seems to fit the clues better than anything else.

They keep looking at my blood sugar – at the right range and stable. Blood pressure – not deemed to be a problem. My heart rate – no problems seen there. Electrolytes are good. I just seem to be an enigma no mater where they look. The same seems to be true of trying to understand my thought process and behaviors, I am just too enigmatic from the staff who deal with me on a regular basis to figure out, for some strange reason I just don't take pleasure in the same things they think I should.

This evening the CENA assigned to me this evening told me that she needed to get my weight. Now, the only manner that I can be weighed is to use the one (of two) Easy Stands that has a built in scale and lift me out of bed. I told her we could make one lift job do double duty in that when she first got me up she could take the weight reading, then rather than reposition me right back in bed, she could park me on the commode, - leave me a while and maybe with time and gravity a bowel might drop. She agreed. When I was secured on the commode with the Easy Stand still strapped to me she asked if I could be alone for a few minutes as she had to finish passing out ice water to the residents. The call light was left where I could reach it if necessary. She left. A few minutes later another CENA poked her head in the door and asked if she could borrow that, nodding toward the machine. I indicated that I was somewhat attached to it right now. She said no, that she meant the battery. She detached the battery and left, saying she will be right back. Shortly after she left my CENA returned. She could not lift, clean me or put me to bed as the machine was now without any source of power. I told her the other CENA took the battery and said that she would bring it right back. My CENA went to look for her.

I'm sitting there, on the commode, strapped to a now useless lifting machine,with nowhere to go. I muse over the events of the day.

Is this anyway to run a facility? Lack of decent communication so that not everyone knows what is going on at the same time so that things can run smoothly. Are those kate breakfast starts by design or happenstance? To someone not of the system (like me)does this inspire confidence and instill a relaxed healthy rehabilitative atmosphere” does anyone have an idea why such a supportive condition might possibly be desired? Does anyone understand the significance of reducing stress and the resulting cortisol for everyone concerned? Does anyone care about such things? Do they know that they could, that it might make a lot of things better all the way around?

Why am I here?

20 October 2013

Sunday ...finally

This is no way to treat anyone

I certainly wouldn't book a stay in this hotel again

Sunday evening, and I have survived through the weekend. Not easily, mind you. It begin with difficulty Friday morning. Friday is one of my two shower days every week. I usually get a shower after breakfast sometimes at 9:30 sometimes at 10:30 almost 11 AM. I love showers. Since I only get only two a week, they are particu;arly joyful to me.This last particular Friday two CENAs arrived at my bedside at 7 AM to wake me up and inform me that they were going to get me my shower right now, so as to make a better working schedule for them, so they wouldn't be quite so crowded the latter part of their shift. Don't overlook the fact that this is the first I had word of this change in their work schedule, apparently no one ever figured on consulting with me earlier on this little foray into adjusting working arrangements.

I was a little groggy and explained that I hadn't quite awakened yet, they said that would be all right, they were ready. They opened the door and proceeded to draw in the Easy Stand machine which is used to get me out of bed and into the wheelchair. Having turned back the sheets and exposed me to the cooler air and twisted my feet out of bed so that I was now sitting over the edge of the bed, ready to be laced into the machine, I felt like an old boot having been laced up for a work day. I was ready to be hoisted. That was when the battery showed that it was nearly out of charge. No problem they went and got another battery. However, there was a problem, it too was without charge. They had a grand idea and they went to commandeer a battery out of another machine that was being used. When they came back with big grins and the other battery, at once they slapped it into the machine that I was attached to, it too failed to work. Finally they got another complete machine and hoisted me into my wheelchair with that.

In case you're keeping score that's 3 dead batteries to achieve what the 4th one and a different machine actually was able to do. The batteries are supposed be charged overnight and as this was seven in the morning, one would assume that they were done with the charging. I don't know if somebody is falling down on the job or the batteries are of the old rechargeable type and have gained a false bottom, in that case they could be charged all night long and nothing would really change.

After experiencing this kind if event more than once, the feeling begins to grow on you that the whole affair, this whole place is way past being efficient and top notch. It is probably past its prime, both in building and equipment. I watch some of the CENAs having to work with this crummy equipment and I see them recognize that they are not the only ones being put in an impossible situation. Some stay as they need the job, others move on to school or another job. They are glad to get out. I don't have that option. To me that shows that they have some consciousness about themselves, the work they have to do, and the people for whom they provide care. They must feel as terrible about putting me through this stuff as I do submitting to it.

At this point I began to be aware of a sense in my stomach and an uneasy feeling. Nothing seemed very settled, I seemed to have the uneasy, queasy feeling that anytime now I might be adding to the slop on the floor for the housekeeping department to clean up.

Once in the shower room, which can be very crowded, it is not big enough for 2 CENAs a resident, a wheelchair and the lift machine. Once again I am being strapped in a lift machine to be removed from my wheelchair, placed in the shower chair, an ABS plastic device designed to hold the resident and be wheeled into the shower. Yet once again the battery began to fail on this machine and I was barely lifted into the shower chair before it ceased working. The only problem was that the CENAs had positioned me too far back in the chair and I did not have a good position. The 2 CENAs decided that they could try and lift me up again and move me slightly forward, except the battery has now given up the ghost. They tried, they pushed, they pulled they did everything but get a bunch of levers to pry me about the seat just a little bit. By now the queasy feeling in my stomach has escalated. I no longer feel like I'm going to get sick, I am getting very lightheaded. The 2 CENAs decide amongst themselves that maybe they might be able to affect my shower even though I am not seated adequately in the chair. At this point I am becoming so lightheaded, but I can hardly keep myself upright in a chair using my arms. I start to flop forward and they become concerned and that I might fall right out of chair onto the floor.

The emergency call light is is activated to call the nurse in. At this point I am no longer able to sit upright and keep my eyes open. I can hear all the activity in the room and someone calls for another nurse, in turn the call goes out in the overall shift nurse also comes in. Remember, this room is not big enough for 2 nurse aides, a resident and all the machinery necessary. Now we're adding 3 more nurses - Party in the shower room and i'm the only one naked!

Several people are shouting at me and calling my name and trying to get me to wake up. Voices demanding that I open my eyes and look at her, which I can do for about 2 seconds of time. Meanwhile I have no desires, I have no idea what's up. It doesn't bother me that I'm stripped naked in front of 5 different women. All I wanted to lay down. After much questioning, some of which was quite accusatory (remember hearing his last thing to go when you fall asleep or even when you go under general anesthetic, everything else seems to shut down but your hearing is still there right up until the bitter end). With some of those accusatory comments I could hear the voice and I can name the person. Those words and that attitude they present continued to echo in my mind. I lost control of my bladder sphyncter and peed all over the floor, got some of myself too.

Eventually it was determined that there was going to be nothing to get me cognizant enough to have a shower so they might as well get me dressed then back into bed. A large class of orange juice was produced for me to drink. The nurses left and the comment was made that I should be rinsed off, toweled dry, dressed and taken back to bed. The other CENA had left the room by now. Only the one CENA remained. She turned on the water valve to the shower, without waiting for the hot water to arrive from the first floor where the water heater lives to the third floor where I am, she immediately takes the shower head in hand and proceeds to “rinse” me off. I could only make gutteral sounds, not speak. My muscles were spastic and uncoordinated as I growed and tried to fend off the cold water from its application to my now chilled body. Just as suddenly as it happened the liquid assualt was over. As I was slowly dressed and loaded back into my wheelchair , I continued to sip the orange juice. Wonder of wonders! This time the battery seem to work in the Easy Stand.

As this unfolded I felt like some newly discovered specimen that had never been seen before. At no time did I feel met and acknowkedged as a fellow human being. Instead I was approached at a less than human level, hosed off and disposed of.

When I got back into bed I was exhausted all I wanted to do was sleep. About 90 min. later my breakfast was produced. This is not strange as I take most of my breakfasts while in bed. Between the sleep that I had and the orange juice, I maintained enough conscious ability to eat the breakfast without spilling any and making a mess. I proceeded to go back to sleep and slept all way until lunch. Which again was presented on the tray table that can be pushed up to me so the meal can be presented right in front of me while still in bed. Again back to sleep where I slept solidly until about 3 in the afternoon.

Meanwhile, I had been aware of a growing sinus headache since around 11 o'clock that morning. I had made a request for some Excedrin and a Claritin. Half an hour later another CENA came in to check on me and I restated my request for the medication. Another half hour after that nothing had arrived so I got my phone and called the front desk, to be transferred back up to 3rd for nursing station where I requested of the nurse who answered that I'd put in a request for some Excedrin and Claritin over an hour ago, and I still hadn't seen anything yet. I was informed that the nurse had been told and she will be reminded again. Finally, at a quarter after one the nurse arrived with my Excedrin and Claritin. Only this time she brought only one Excedrin, not 2.

This nurse and I went through this issue once before. For some stupid reason she believes that she knows better than me or the doctor who prescribed the standing authorization of the medicine upon my request. She believes that she knows best what I need and since I have no way to get the medication myself, she gives me just exactly what she thinks I need. She and I have been round and round about this before. I don't know what her problem is. In the end she comes across very passive - aggressive. She acts very nice nice and at the same time she delights in using her authority to use her power to be very mean and punitive. It appears that once again she is doing the same behavior. Hers was the voice making those accusatory statements in the shower room, by the way ...

I remember when I was going into nursing care for the 1st time. I told my father that I did not want to go into a facility that treated everybody the same, at a very low level, and took away your humanity and reduced you to an object so that you are not cared for but rather in this way reduced you to where you were more warehoused.

He assured me that would not happen. At the time I remember thinking, how can you guarantee that? You won't even be there. You'll stop in occasionally and think everything is just fine. Meanwhile, I'll get the horrors of healthcare as delivered by an organization is guded by stockholders. And you know stockholders - the only thing they can see is that dividends are going up. And you know why the dividends are going to go up, corners are going to be cut. All the finer things, the stuff I have worked for, the level Ihave taken for granted or have worked so hard to gain will be snapped right away. I will be reduced to the common level what is considered good enough for everybody, and if I raise a protest or act differently I will be singled out as what's wrong with you? Please, dad, don't promise the things that you can't control. I'm a big boy now, the time for you to make everything okay just by saying so is passed. I know how the world works. If it is good enough for some bookkeeper type, it will be considered appropriate for me.

So over time I began to realize that I have indeed entered into a world where some people under the guise of offering care, really reduce people to less than human, and they don't even see it, nor the part they are playing in causing this to happen.

I spent most of my weekend sleeping, partly because I needed to regain my strength from the harrowing shower episode. And partly because there's actually nothing to do.

Even the meals have proven less than wonderful. Every month they give us a menu so that we can participate in choosing what we'd like to have at each meal, except that nobody ever takes your requests, and if they do you are met with all that menu is made up months ago we don't actually have that food right now. Just today, Sunday, 20 October, lunch was to be turkey tetrazzini, broccoli, creamy carrot soup. What actually arrived was tomato soup, a grilled cheese sandwich and a very small bowl of diced peaches. The alternate was a chef salad. I don't believe that I have actually had a chef salad here, although it had been quite often at the other facility. Chef salad is not bad. You can make a meal from a chef salad. Not this place. They are so niggardly on portions. A chef salad would be considered grand, so I have never seen one.

For dinner the menu for tonight says salad with tomatoes and cucumbers Italian dressing, stuffed pepper, green beans, and a dinner roll. Instead what was sent out was chopped up lettuce (no tomatoes or cucumbers), Pan Seared Swai (don't know what Swai is? Think cheap fish with no flavor), they were accompannied by instant mashed potatoes and a spoonful of green beans. I would've loved to have a stuffed pepper, I have had them here before, they are not half bad. I don't know why the kitchen decided to have a fit and send the alternative, but once again they've chosen the most dull, tasteless ill appetizing food - as per usual.

Sometimes I wonder who have I offended to consistantly be treated this way? Do these people get their jollies from being so oblique about serving food to those who can't leave. Does the food cart leave the kitchen for the residents accompanied by muffled guffaws and covered sniggers from the kitchen staff? What a bunch of cards!

When I asked the CENA later this evening what everybody else had, she said stuffed pepper. When I told her what I had, that I would have loved the stuffed pepper, she told me that I should have requested the pepper dish, implying that they would have sent the other meal. I told her I have tried that several times before and was always met with the response that there is no more other dish – we're all out. I've stopped requesting, as the kitchen doesn't seem able or willing to work with me on that issue. Somewhere there is a stockholder smiling …. Meanwhile its midnight and I'm hungry.

Meanwhile I have always made do with some snacks that friends have brought by for me.

Lately I am out of snacks. I requested of the activities person before if she would make a small purchase at the grocery store for me when she is next out and about. She has done this for me, and it has worked out well. But now I'm out of even peanut butter. I had asked her two weeks ago, but she said she was not scheduled to work the shopping day, but as a favor to me she would pick up a jar of peanut butter on her own time and get it to me.

No peanut butter has been forthcoming that I can see – yet. (there is always hope)

Last week was another time to get my request in for a shopping trip, I had my cash in my pocket and could never find her to ask for some snack foods. Two weeks now I am without extra eats. And the kitchen sends up what ever they want, minimalist portions too.... I didn't treat myself this poorly when I could cook for myself. I'm having a hard time getting used to this style of life now.

When I was living at home I had my retirement stipend from the county when I used to do court work. It wasn't much but it was more than enough to meet my costs every month. I always ate well, and never went to bed hungry. Even at that I managed to lose one hundred eighty pounds in one year. The trick is to eat when hungry and stop when you are not. I ate about six small meals every day, right up until I went to bed. My doctor was pleased, I was happy, and I never felt as if I was missing anything.

Now that I have been instilled into nursing care, the quality of food is lousy, it only arrives when they are going to bring it and only what they want to provide, and these people instist that they need just a little more than my stipend every month to provide this lower level of care. I seriously think something is wrong here but no one seems to be able to understand that. Somehow everything I mention gets discounted the moment they hear it. In their mind they are doing everything right. No one semms able to hear me clearly yet.

There is a very strong implied message here. I get the message loud and clear, everyone else, it seems, is marching to a different tune, one that I can't quite understand. (maybe I wouldn't want to) The longer I am here the more I experience little events that show me I am not made for a place like this. It isnot as overt and in your face as the last place, they didn'teven try to hide their disapproval. Here its all not seen or not quite fully understood. They have tried, asking me what would I like to do. It is not as easy as that. There is no woods here, no way to lose myself in nature when ever I needed to get connected with reality again. Don't tell me anything related to people is going to be real, they can't help but to insert themselves in there somehow, thats not real - only what some people delude themselves to be real. Not enough people have looked into themselves deeply enough to show they understand what real is. I suppose I need a cross between a Bhuddist retreat and a nursing home, one where care for ALL sentient beings is the standard. Not where you can be hosed off with cold water after you are deemed unable to take a shower. (I hope that is not considered standard offering to all residents)

Well, its past midnight, I'm hungry and breakfast is eight hours away. I should go now.

Saturday
5 October 2013

More of the same intellectual foolishness

why am I reminded of the Keystone Cops?

Yesterday was my second scheduled shower day, I was looking forward to it. My briefs hadn't been changed in two days (for a different reason). I don't care how careful one is while urinating while supine, there is always some drainage once the sphincter muscle closes. This is in part why females can be very insistent on having toilet paper available when using the facilities and little boys learn the rhyme, “That no mater how much you may shake and dance the last few drops go in your pants.”

Its a consequence of anatomy and gravity intersecting at this juncture, after a long day of making sure I remain hydrated sufficiently, the medical people fumbling about with various diuretics to reduce my blood pressure, there has been more than my fair share of my own form of “uretics” that have no where else to go but my briefs and to some small degree my lower abdomen. Now, I am told by some CENAs that I can request a bed bath at any time, and this does help clear up the feeling of being steeped in my own juices, like an overused teabag. But there is nothing like running water cascading all over you to convey the sensation of approaching being truly clean. And the fact that through no reason of my own cause, I am authoritatively assigned two showers per week. It is not just me, everyone is awarded only two cleansing showers per week, just as prisoners are afforded. I guess if that is good enough for individuals who have been adjudicated in a court of law, then what standing do I have that this might by somewhat niggardly of an approach toward my wanting to “closer to Godliness?”

So yesterday I was feeling somewhat vile, odious, filthy even, I was ready for a shower, eagerly anticipating the mildly tepid water that we are allowed. The water temperature is regulated before it even gets to the tap and the mixing valve for the same reason the coffee here is so bad and it is impossible to make a decent cup of tea as well, there is this absolute fear and loathing that someone may get burned. It started with various corporation's counsel after that famous case where the elderly California woman burned herself with a cup of coffee bought from MacDonald s drive through window. She sued MacDonald s for damages, it made the news, the late night comedians all made great fun of the issue. While we all were being treated to a laugh fest about being clumsy with a hot beverage, those of a more legal and busybody mind began to swing into action to save us all from ourselves from ever getting burned ever again. Ah, there is nothing like the self appointed Nanny effect to bring those who favor fancying themselves as looking out for the public good. Now, not only do facilities such as this have built in safety measures that make sure we will never be harmed by overly warmed water ever touching any part of our bodies, but state legislatures are not to be outdone. There are regular surprise inspections to determine if everyone is playing by the guidelines the state has so thoughtfully determined to be so very safe for various kinds of water applications to these fragile bodies. Good Lord, I am sure now we won't fry or melt.

It amazes me that they could give any broken fecal material if we ever have a warm, steaming hot shower ever again, or a good cup of coffee, or tea. No! That causes no one any concern whatsoever, why after all they even make laundry soap that is supposed to work effectively in cold water – so what's my problem?

It is just that after discovering the wonders of some of the more gentle and delightfully wonderful aspects that could be enjoyed in life, and spending most of my adult life securing and enjoying them, suddenly they have changed the upper limits limits for me. No matter what I try or how I conduct myself, these items are continually and most possibly forever being withheld from me. If I challenge the rationale behind such acts, I am told with the straightest of faces that it is either in my best interests or it is against facility rules or state law or both. Sheesh! Talk about feeling small, powerless and ganged up upon …

So, Friday I was looking forward to one of my only twice a week opportunities to get clean per week. I was helped from my bed by a new CENA with the aid of a machine known as an

Easy Stand. My wheelchair was at the ready. My selection of clean clothing had been selected and already carried down to the shower room, awaiting my entry and subsequent shower. I was literally dangling in mid air, between the bed and the wheelchair when there was a knock at the door. Another CENA poked her head in the room and announced that the word had just come down that the order was being sent up and down the hallway that there were to be no more showers begun from now on, until further notice.

The CENA working with me protested, that we were just on our way down there, my clothing and toilet articles are down there waiting for us. “That doesn't matter”, we were told, higher ups are in the building and our administrators don't want any showers going on.

The CENA working with me apologized to me, (even though we both knew it was not her fault) then stripped off my two day old, odious briefs and put on some new ones. I was fitted with some shorts and shoes, I was still wearing my T shirt from Wednesday (I'm still wearing that one now, today its Saturday afternoon). I was placed in my wheelchair ready to greet the day as if a shower had already been effected. Maybe other people are fooled by such subterfuge, but I know better. The thought that I am going out even within the halls of this place wearing unscrubbed skin, left since last Tuesday's shower is somewhat disconcerting. This is on Friday. As I write now on Saturday I feel even more unapproachable by those who have been able to pass soap and water over themselves. Talk about feeling a part of the “Great Unwashed”, ugh.

I rolled my wheelchair out and down the hall, pressed the elevator button and could subtly hear some of the verbal commotion coming from the floor below. A sure sign that something was going on down there that necessitated someone holding the elevator doors open, and thus the elevator wouldn't be arriving anytime soon.

Often when I am riding down the elevator and it does stop at that floor, the doors would open and several people will be sitting in wheelchairs clustered around the doorway to the elevator, close enough so that if anyone wishes to get off at that floor, they can't do so as there is nowhere to step. Often the people clustered near the door are having “issues” with one another, trading insults and invectives with each other like impudent children. Many of these folks do not hesitate to include others, including yourself, into their little special abusive contumelies, if you are unfortunate to be nearby. Further from the door is a gentleman with an unknown (to me) difficulty. He never speaks but is often vocal. He makes growling sounds which seem to have some kind of meaning to him, often with some long term observation of his behaviors, some of his vocalizations/behaviors begin to show some meaning. But whatever he is trying to say, it gets repeated ad infinitum until it loses all sense and meaning. Through the closed doors of the third floor elevator I could hear this tumult rising up from the second floor.

Listening to this brouhaha the thought occurred to me that I don't even sing in the shower, yet I had to forfeit my shower for some bigwig, high mucky-muck to not be disturbed while doing a surprise inspection? Boy, I hope the sacrifice was worth it. Whatever the result I can be assured that my sacrifice has been long since forgotten by now. I should be soaking wet by this time, soap cascading over the entire surface of me, reaffirming my able part in gentile community. Instead I am captive here in Bedlam due to the fact that I have a neurological disease and this is the only place that everyone believes I need to be. I certainly don't understand, I really feel completely misunderstood myself.

The elevator takes me down to the ground floor. The second floor rumbling disturbance passes behind doors that don't open on this pass, thankfully. I roll up near the reception desk,make my greetings and sit for a while, able to see normal people – at least more normal than the rest of the people I get to see here all day. Various family members and friends of residents come in and out. Service providers come and go. It is a relief to sense their different sense of who they are as they come into the building. Most of the employees give off a different feeling. Many have the sense of just scraping by until the next paycheck, or trying to stay away from too much scrutiny for now.

Someone new to me comes down the stairwell and out into the lobby. He has dark hair, next to no neck and his white shirt is distended quite a bit over his belt, which looks as if it had given the better part of its functional life for a thankless cause. He is carrying a case type clipboard into which he places papers and retrieves others. He is wearing one of the company name tags on a cord around his ample neck. Several people speak to him informally, he responds in kind. There is no sense that anything is wrong. He says thank you and leaves out the front door.

I turn to the receptionist (who seems to be aware of everything going on in the building) and ask quietly, is that the reason everyone was walking on egg shells?

Yep.

Well, I certainly hope my giving up my shower was worth it to everybody. Personally, right off the bat I am not too impressed, maybe it is because he shares the same physique as my younger brother. Possibly there is some transference going on here. I am not very appreciative of fellows who are that overweight. And I'm still feeling unclean.

Back upstairs I find my lunch tray waiting on my bed. I roll up to it and pull the tray onto my knees, then proceed to eat my lunch. Ten minutes later I am done (the portions are small – I continue to lose weight, in spite of extreme inactivity). I find the food cart with the trays on it, a CENA thanks me and takes the tray to place it somewhere until the full food trays are completely removed, then the cart becomes the collection cart gathering up the empties to return to the kitchen.

As it grows close to two o'clock and the end of the shift, the CENA from this morning and the aborted shower finds me and apologizes for not being able to accomplish the shower today. She assures me that she feels really bad about the way things worked out. But, she does work both Saturday and Sunday, she will move everything to get me a shower then, is that okay?

She hasn't worked here enough to know that will never happen, I realize that she would like to do that, she is even willing to do that, but I would be very surprised if she will get a chance to do what she offers. I know that even if she is due to work those days, once they come on the floor the CENAs working on that shift break down the number of residents on their floor by the number of CENAs working that shift so that they each have even number to care for. The resident numbers are down now so recently there have been three rather than four CENAs per shift. The chance that she will get to work the section in which in I reside is small. Folks that work with me also get to work with my neighbor – he is always difficult to work with. He argues, always takes a negative point of view, even if it is not to any advantage. He insists on being intolerable. He insults anyone, he doesn't care. Complains vociferously and loudly. If one where to try to motivate him by saying that he is hurtful and mean, he says “Good, now get out!”

The advantage to having to deal with Joe, next door, is that the same CENAs also get to work with me. Joe just requires attention in the morning, getting up out of bed – and at night getting back into bed. That is when he most often swears at the CENAs and is so unreasonable. First and second shift each get a wrestling match with an undesirable character. The rest of the time they like to stop and hang out in my room.

Sure enough this morning she was on staff but not assigned to me. I saw her briefly helping (receiving valuable experience with another CENA how to survive working with my neighbor). Through my open door, our eyes met briefly. She had that knowing look that gave the impression that she realized that she couldn't get to giving me a shower today. I smiled equally knowingly to her, “Welcome to organized Bedlam – watch your sanity.”

I know that several CENAs have told me that I should be able to get a bed bath any time I want. Sounds like something from the depths of the CENA-Resident interface handbook. Something they are supposed to know but no one ever actually says out loud. I have asked for a bed bath a couple of times while I was getting used to only one shower every three or four days. Only a couple of CENAs undertook such a task very willingly, usually such an effort was best engaged early in the morning. By the time ten–thirty rolls around their focus is on moving toward lunch duties, and after that the emphasis of their efforts is toward getting lunch picked up. Finishing their charting of behaviors, passing out shift waters, then leaving. Chances of getting washed up quickly disintegrate once the opportunity for the planned shower has passed.

Afternoon shift has a whole 'nother set of residents whom they are expected to shower, and there are only two single occupancy shower rooms on this floor. Right now the resident number is somewhere in the low thirties. Capacity is set at low forties as the numbers ebb and flow, the quality of service changes.

I am beginning to have my own delicate oder about me. Good thing I sleep with the CPAP machine, I might be distracted by my own ripeness otherwise. Tomorrow is Sunday. Most every Sunday is laid back around here. Just like about everywhere else. No body comes to visit me here, I don't expect things to be too crowded tomorrow. The CENA schedule should be somewhat more open tomorrow. Sure is different having to preplan something as simple as getting washed up. By the time get to next Tuesday when I probably will get my next real shower, my hair will have no body left to it and I really will look like a grease ball.

Oh the joys of a healthcare program designed by administrators, overseen by different administrators, and carried out by individuals who seem to exhibit various levels of willingness, ability and follow through! I never envisioned my non-working time to be lived out this way. None of this is even close to what I expected. Not by a long shot.

19 September 2013                             This was begun more than a couple of weeks ago then put
Thursday                                           on hold, until finished today. 2 October2013
5:00 AM

Sometimes I can't even find escape through sleep.

I woke up at three-thirty this morning from a dream. I usually don't have bad dreams. Usually the first part of my dreams are about filing away the events of the day, the second part is oriented about special events, replaying events multiple times each time differently, in an effort to gain a different point of view.


These are often about similar events that I have experienced in my past which are somewhat puzzling to me, but these dreams are not exactly about the events themselves as they were, they seem to be those events that are just slightly off from my past experiences. Almost as if I were trying something out to settle my understanding about some of the events of my life that had occurred. Many times the events will run through a certain set of limited circumstances, then recycle through those same circumstances all over again, only just a slight bit different. It seems as if I were unconsciously trying out one set of circumstances after an other in order to learn something about the sequence that has me concerned. When I make sense of something the slightly recycling dream ceases, and its on to the next troubling vignette. Often these dreams are not difficult but there is sometimes a difficult sequence that seems to either become somewhat frustrating as it keeps repeating or I wake up as the sequence is unfolding and it is just disturbing enough to kept me from returning to sleep.


The third style in this succession of dreams is during the last part of the sleep/dream cycle and it is usually the fantastical dream sequences, like flying, or hovering just barely two feet above the ground and finding that it is just barely easier moving this way rather than walking. Or dreaming that I can motivate just like a Kangaroo by hoping in long graceful hops for miles on end. These are usually fun or at least interesting.


Its usually the dreams that occur in the second phase of the dream cycle that are the ones that wake me up. It seems as if the dream is an unconscious effort of my mind to work through trying to understand something in such a way that I understand it better. In this case I already understand, but I seem to dislike the perceived results anyway.


I awoke dreaming that I was in my back yard, in my bathrobe looking at the part of the ground that is of poor soil and is full of lichens, British red soldier lichens in fact. Then I noticed someone in the eastern side of my border that I shared with my neighbor that was wooded on both parts of the boundary. There was a sense of a person in that woods that straddled the border who was cutting some of the conifer trees in the border. I couldn't make out who the person was, but I could definitely tell that someone was attacking the trees there. I began to walk toward the axe cutting the trees and seeing the parts of the trees collecting in a pile. As I came closer the axe stops and the remaining dead wood is suddenly in flames. Flames were leaping into the the air. There was a single dead tree aflame but the flames did not spread to the rest of the trees.


As I quickly hurried forward to ask what did they think they were doing? I began to fade from the dream, but not before the words began to form in my mind, “Its not your any more, you now longer can control how it will end up.” I seemed to be lifting off my feet as if I were being taken away, the scene grew smaller beneath me and in my minds eye I could see mortgage papers being signed by unknown people, in an unknown office. I could see and hear the birds I used to watch in my yard, the deer who often came through there, and dropped their twin fawns several years in my back yard. The place where I buried two of my deceased dogs in the back under the lilac bush, the ghost images of the ten full chord woodpiles that were cut, split and stacked, then seasoned before burning. Part of me will always remain there, and yet no one will be able to see any effect of my having been there.


It feels on one part as if I have died, I have been hustled away from a very special spot, and I don't have any control over it. I can still see the beauty and the joy that that property allowed me to have. I awoke and was totally awake, staring at the ceiling, not wanting to go back to sleep. There was no fear of returning to sleep, rather a wanting to be as close as possible to. What for me was a very special home. For the rest of the evening I recalled gardens I had grown, the produce I had nurtured from the soil. The snow that I had moved from the yard, drive and from the roadside. The walks with the dogs, the nightly trips to the end of the drive, their explosions acroos the road in the dark to explore the land across the road in the USDA area. The way they always came back when done. The bark of the chainsaw as itbit into those logs I used for my only sourceof heat for almost ten years.


Where I am now seems so foreign, so cold, so inhuman. I just couldn't go back to sleep.

Sunday                                       I part way finished this the other day and set it aside.
29 September 2013                Now I am finishing the piece and including it out of sequence.

The days are indeed strange,

I'm surrounded by people who do very little in the manner that I'm used to

Strange day today. Last night at 2 in the morning I was finally given some blood pressure medicine as a stopgap to bring my ranging blood pressure back under control. An hour later the nurse came in to check my blood pressure had dropped significantly. I went to sleep finally believing that possibly the people in charge of the medical aspect of my care might finally beginning to understand where I come from and what I've been doing before I got here. Strange concept to be under nursing care for so long and find out the those in charge of my medical aspect are just now beginning to get a complete picture of me.


I woke this morning to the nurse calling my name and laughingly saying that she had been there for quite some time trying to get me to wake up. In all fairness anymore I mostly sleep with my iPad set to Pandora radio and a pair of in earbud headphones plugged in so I don't have to hear my next-door neighbor's television all night long. Sometimes he turns off, sometimes he doesn't. The choice of movies that are offered through the small hours of the morning are nothing that anyone would want to listen to through the doorway all night long. Plus he likes to play his television with the volume somewhat loud, and he really doesn't care what anybody else thinks.


So the nurse was calling my name with her hands full of my morning medications. Meanwhile one of the CENAs had already been in my room and delivered my breakfast tray. The tray was placed where I had formally had my water supply in my nearly full urinal, as well is my glasses. The nurse found 2 small edges upon which to sit down her handfuls of morning medications and then bustled out the door quickly saying that she would be right back with more medications. Meanwhile I turn off the music, unplugged and recoil the headphones and begin to search for where my glasses have been moved to. I don't see that well without my glasses. Small details disappear into nothing I cannot even see the hands or the numbers on the clock across the room. I gingerly pat around the breakfast tray and on it trying to locate my glasses. I stop as I do not want to inadvertently knock them on the floor or scratch them.


I can be patient. After all I was so poor of vision as a child I learned easily to be patient because I had grown up seeing that eventually the details come forward out of the fog. All I had to do was look a little harder or a little stronger. I used to climb trees all the time but I could never see the branches until I was almost on top of them. But I knew if I started moving up the trunk of a tree that the branches would appear in just the right place for me.


Several minutes later when the nurse re-arrived she was surprised that I hadn't started eating breakfast. I explained to her that somewhere on the tray tables bearing most of the things I need, some bright CENA had replaced my glasses, which were right exactly where my breakfast tray was and I had no idea where they were. The nurse went right into problem-solving mode, which is a standard way of interpreting everything by nearly everybody. Here the content of what somebody says then goes right into solving the problem. Just like school and all the tests we've ever had, the approved way of conducting oneself in school has been completely adapted to running ones life even if it makes the things we do to others favorable in one mannor but not helpful in other ways for someone else.


How sad.


I'm glad that the nurse helpedto find my glasses, but judging from her following comments she paid very little attention to what I was saying about having poor vision. Apparently she doesn't realize how much eyeglasses give me proper version, or maybe that doesn't mean that much to her. I know there are people who need glasses very little, that is not me. Imagine smearing vaseline on a pair off glasses, then try to see through them, thatisa measure of how well I see without corrective lenses. This is the very same excercize that is used to help those being trained in how to work with elder paitients.


I often find through almost every dealing that I have with other people that they tend to first interpret what I say as if they were looking for the correct answer, constantly, and never pay much attention at all to the content of feelings or the measure of misunderstanding that is being spoken about. Even on those occasions when I might try and bring them back around to the feeling content, they tend to be more interested in the materialism of stuff and things. This often centers around denying my input, saying that it would be against the rules, that they could loose their job. To me this seems so narrow minded, when the human mind can see things in a multiple of different ways simultaneously - both right brain and left brain utilization. It seems that we are so thoroughly acculturated by the effects of our early schooling in the way most everybody conducts themselves around us, to find yourself forever lost in a very foreign forest of materialism.


To me a large part of what I was stating in those first comments in the morning were more about the fact that I am in a position where I cannot control much of anything, including my neighbor's very difficult personal behaviors and how they affect everyone around him and that he is in no way considerate of anybody else's understanding our ideas. I was also trying to remark incredulously as to how the unknown CENA that morning was more concerned about depositing her load of my breakfast and getting onto the next in her series of tasks that she could move my glasses with impunity and not even spend a few moments to make sure I was awake to know where my glasses were and that the breakfast had been served. An obvious indication that she was more interested in finishing her chores above all else.


Often the CENAs will call good morning to me and I will wake up and clear the space for them, if I have not been awakened already. But it was strange to have a CENA assigned to me today who was more interested in getting the next part of her workload done to the point where something that I was expected to utilize with full waking consciousness, was delivered but no effort was made to make sure that I would be actually utilizing it in the realm in which I was expected to participate. That's awful cold.


I did get another dose of the new medication and another quick check of my blood-pressure. I do feel a little more safer in this place.


More later.

1 October 2013
Tuesday

If I don't write about this, how is anyone going to know?

Would anyone believe this if I weren't here scribbling?

I was watching TED.com and saw this video: http://www.ted.com/talks/regina_dugan_from_mach_20_glider_to_humming_bird_drone.html. The talk was interesting but the comment below stuck with me.


Right now the Internet reaches two billion people, or thirty percent of the population of the world's people. That us only for the cost of access to the ports to get your message online. Whether you use a wifi connection, your own ethernet access, or even a lowly dialup modem, you can get your message out and over the horizon or down your street. You can offer a way of seeing that possibly no one else has known about. Possibly the work to which they are committed is too structured and tightly controled. Perhaps the hierarchacal operatives who over see the operation of the program are too concerned about the meddling by legislative oversight that is oriented toward coercing rule following more than the care, comfort and ease of use for the residents in certain facilities.


I find that many people who end up in facilities like this are more than surprised at how stark places like this are in reality than they ever thought. Some of their family members are equaully dismayed, but have no where to turn or no idea what to do. They feel as if they are all alone, no one will listen to them. If they do get heard some brilliant arguers offer that the medical people must know better, after all they went to school for this. In my experience attending a school does not equate with being highly cognizant of the full parameters of what is going on with some one.


It is when very few people know or care what is going on that things can very easily go wrong.


I found out this last weekend that some concern had been raised why I have been having so many sinus headaches during my stay here. I know my alergens, house dust and mold spores. My worst headache season is from when the snow melts until the forsythia bloom. That is when the mold that has grown beneath the snow is uncovered. On the days when a low pressure weather system comes through, the molds all release their spores and my head implodes. By the time the forsythia bloom the sun has dried out the ground and the mold has just about gone away. But this year they have been constant throughout the calendar. I have been having debilitating sinus headaches nearly every day of the week, the only relief has been two Excedrin often followed by a Claratin. The Claratin takes at least three hours to begin to have some effect while the Excedrin usually takes about twenty minutes.


This last weekend of September the medical staff decided to check my blood pressure at least once every shift. I inquired as to what was going on. I was told that the nurse had noticed that during my regular blood pressure checks it was observed that my readings were always high. I asked as to why I was not receiving the blood pressure medicine thati had been taking since I was about forty-five years old? The response was, what blood pressure medicine? Informed them that I had been taking 10mg of Lisinapril everyday on the direction of my personal physician. They had no idea. No one had ever asked me and they had nothing from the previous nursing home. Suddenly the reason for the headaches was becoming much clearer.


I spoke with the third shift nurse who was measuring my blood pressure at 1:00 AM. She indicated that she had a phone call in to the Physician's Assistant to see if she would authorize some Clonopine, which came shortly after. My BP was 184/114 before and 90/70 by 2 PM.


By today, Tuesday the first of October my BP was back to 209/120 at the end of the first shift when I was “informed”that the blood pressure medicine was to be a dirurectic type, then they would watchmy blood pressure for a few days and determine where to go next.


I was started on the medication at 6:00 PM, I also had another headache beginning at that time. By 9:00 PM I had already passed 1 liter of urine in 3 hours, how I am going to sleep like that is not to clear to me. A blood pressure check at 8:00 PM reported 190/ 107, I'm not too sure the diuretic is the best way to go. I still think maybe a beta blocker might be the better way to go, at least if I am going to get some sleep and/ or have some dry breifs by the end of the night.


Tonight at 9:30 PM my next door neighbor was returned from the hospital, to where he had been removed at lunchtime today. I heard the shift nurse reciting all of the reasons why he had been petitioned to leave the facility; difficult to get along with, constant in continance (usually five times a day – his bed is always soaked in the morning, several times a day his pants are dripping through his wheelchair and leaving a large puddle on the floor. He refuses to acknowledge or admit that it is he who is leaving puddles on the floor, or that his pants are wet), he has constant edema, refuses to take his medication, he often assaults the CENA staff for no reason … so the facility made an effort to get him some appropriate help,


Apparently the hospital didn't want him in their facility either.


Basically these facilities are dumping grounds. The first facility I was at could barely disquise that they were basically in the business because they could make so much money off of residents ($7000/ month) they made sure that their clients were on average 80 years of age and usually were of such a diminished mental capacity that they were not bound to have enough mental ability to offer too much obstruction to the facility's wishes.


This facility seems to be willing to take in anybody but there is not so much offered much above a pretty low level of stimulation or occupying activities. What is available for involvement is best covered by television, which is often insulting on its own, but makes a lot of head way in insulting most everyone's senseof self. There are Uno turnaments and discussion of current events – not much deeper than repeating the national headlines. Sometimes there is an outside activity that revolves around a simple quiz game. It is very easy and even though I wait respectfully for anyone else to answer first, most of the other respondents quickly look to me to complete the unanswered statement and then agree that was the answer with big smiles at achieving success. It is polite that most of these folks are so delightful toward one another, but there isn't a lot of challenge to be had.


There seems to be little in the way of anything to rise to meet as a stimulating situation and yet the staff does seem interested in trying to find something for me to do, they have not hit any big possibilities yet.


Meanwhile, I have no further movement on the blood pressure medicine front, my next door neighbor is unusually quiet as I am about to drop off, I had a chest X-ray taken while I was in bed by the mobile X-ray technitian at 9:30 PM (apparently someone upstream of me decided that for some reason I needed a chest X-ray – 2 views, as if on top of other things I might have pneumonia or something making my lungs full – my breathing is clear and free-flowing, I have no clues what they may be looking for).


Oh well, tomorrow is another day in this endless paradice. Lets see what comes up in that. Pass this URL along if you feel others might find disbelief in the events of my day. Its all true, happening every day.