Saturday, September 28, 2013

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.

Wednesday, September 18, 2013

18 September 2013
4:30 PM

The madness continues
no end in sight

I awoke this morning refreshed, I sept well, in spite of my neighbor's television which he leaves on all night long while he sleeps. I can tell he is sleeping for no one makes that deep and regular a snoring noise for so long if they are awake. In fact his snoring is probably an apnea problem, I can tell by the sudden explosive sounds coupled with gasping that frequently interrupt the regularity of the snoring.

The choice of television is questionable from my point of view. If it is not endless westerns and cowboy shows with their gunfights, gruff talking men. Women shrieking, horses whinnying, and an occasional sound of a ricocheting bullet, then its that Turtleman always acting as the wild animal exterminator with his insane chortle as his trademark. The sound comes right through the closed door as easily as if it wasn't there.

My neighbor is easily combative, he loves nothing better than to push and instigate the CENA staff at every possibility. When they try to interact with him he reacts in a manner way over the top growling, using negative language just short of cursing, calling them names, making impossible demands and then doing it some more. On a few occasions when I have been out of bed in my wheelchair and the door is open I can see him carrying on, he will look directly at me, smile and wink, then continue his verbal tirade at the person who is unlucky enough to have the opportunity to work with him. There are some CENAs who refuse to be assigned to his case.

He has been known to press the call light button, when someone responds and asks what he wants, he tells them nothing, then maintains that he didn't call for anyone. This even when the call light cord plugs into a receptacle right next to his bed that the person answering the call has to physically push to reset so the light can be used again. The reset button itself lights up to indicate which occupant of which bed made the call as well as the light in the hallway over the door. He has been known to pull this stunt endlessly, pushing the button then denying that he had pushed it. This is probably one reason why he is removed from bed early in the morning before breakfast, takes his meals entirely in the day room and is not put back in bed until the end of second shift at 9:30 – 10:00 PM. Yet I have not earned a position within his sights for such verbal harassment. I would like to keep it this way.

Most nights I go to sleep with a pair of earbud headphones connected to an iPod, listening to some of my extensive music collection. I find that just about cancels out the idiot box next door, although the little old lady in the room on the other side of him has difficulty sleeping every night.

So in spite of these conditions, I sleep well. The same CENA as yesterday brought my breakfast today. This was not a scheduled shower day so she asked if I would like to have a bed bath? You bet! There is nothing better than to be able to clean one's body regularly, especially when the only way to urinate is while lying down supine and using a urinal to catch the outflow. There are two difficulties with this arrangement. 1) I have about thirty seconds warning that I have a bladder full and its going to let loose post haste. If I am busy doing something and it is spread out on my belly, I have to make great haste in clearing my way to get to the waste removal equipment before the deluge is unleashed. I can not always make it in time. 2) Just like the garden hose at home, the shutoff valve is up by the house, yet water remains in the hose after the tap has been turned off. How many times have I felt a slight trickle crossing my landscape? So yes I would like a bed bath.

Now these are not laborious affairs, as far as what the CENA's have to do. I cast to the side the sheets and blanket. Unhook the tabs on my brief. When the CENA brings the plastic tub of warm water and the squeeze bottle of body wash and deodorant with the standard issue two wash clothes and a towel that are dropped at my room every morning (see, someone else somewhere believes I should get a bed bath every day, hence the daily delivery of the bathing laundry)i begin to scrub and wash myself. Often the CENA leaves at this point knowing that I do not require any help or supervision to complete the ventral part of me. The comment is often left by the CENA over the shoulder as they exit the room, “Put your light on when you want me to return and do the back side.”

I finished the front side of me and put on the light. Often the CENAs do not appear right away so I drape the towel over the front of me as it can get chilly waiting for the CENA's return. After about ten minutes I tapped a bladder and recovered myself. Then the staff person in charge of keeping the consumable supplies stocked in my room (rubber gloves, briefs, hand sanitizer, etc.)dropped by to check my supply levels. Since he and I get along well, he stayed to chat for about half an hour. He left and I adjusted the towel as I am getting chilled. Ten minutes after that a different CENA appears, this one from the second shift, she was called to come in early today. She said the first CENA had indicated to her to finish my bed bath and then left. I never saw that first CENA for the rest of the shift.

Was it something I said? Why am I getting the short treatment?

The kitchen did their usual abuse at lunch. I received a usual, for here, lunch – one tube steak and seven tater-tots. At least they included a ketchup packet this time, and a small packet of salt. There was a small bowl of vegetable soup (unsalted of course), an extra salt packet would have helped here, but as we have been told, some residents here can't eat the amount of salt the rest of us can. So is that reason to treat everybody to the same menu? If so, how come not everyone is treated to the gluten free diet I get subjected to? And why did I get served apple crisp for desert tonight , with the crisp made from oats?

I try to make sense of the way things operate by watching for patterns of behavior of the staff around here. I am quickly approaching either one of two choices; either the rules around here are designed with no concept of how to deliver supportive care to the residents, or some of the CENAs here have no soul and feel they can work with impunity for either the residents under their care and any sort of oversight, OR they never developed a healthy response toward work, other people, or how to handle ones self when not everything goes your way. Some of these folks need to take some time off to finish growing up. I used to get paid for dealing with individuals in need of some growing up. Now I'm being looked after by some of the same behaviors. Scary!

I miss my quiet little house in the country. Is this to be the next few decades of my life? Life in survival mode. Yippee!

Tuesday, September 17, 2013

17 September 2013
7:15 PM

Power Games,
being a victim no more

I have once again found myself a clueless victim to the words of others. Now I usually am not such a naïve rube. After all I did work with street kids who possessed delinquent tendencies for over seventeen years. For this crowd using words in a deceptive manner was a natural course of life. It took a while for some of these guys to figure out that I meant what I said. I told them how I operate and exactly what I was going to do, that of course was directed by what they did, following their probation orders and doing as the judge had ordered them to do.

I have worked with children who have committed murder, rape, assault, breaking and entering, thefts of all sorts. In every case these misguided individuals had learned that they could say whatever they wished to someone else and they could believe fervently that what they said was the truth. In fact the concept of truth meant whatever they wanted it to mean at the time they were professing their unending veracity. At a later time or under different conditions those words often proved to be totally mendacious, depending on what was most to their advantage.

I knew this going in to each situation. That is why I always let them show me what worth their word carried when they used it. I never got burned or hurt by this standard. There was one time a kid was progressing well with his probation, but he just would rather not have the tail on his behind. He, and his parents indicated they were moving out of the county, the father had a job that was impending out of state. I checked out the offered references and reported to my supervisor and the judge. The child was not a stellar probationer, but he was good enough. In order to not require the child and a parent to return from out of state to attend a final hearing, the case was dismissed. Shortly thereafter the child was rearrested in yet another illegal event and detained awaiting his new hearing. It turns out the move was a scam to get off probation. Since the case was assigned to me before, I was assigned again to oversee the child and family. The judge did not look too kindly on the parents for participating in such a deceitful endeavor and he let them know of how much he disapproved of such manipulation, and for showing their son such total disregard for authority. He had a very direct way of getting parents to understand, it entailed charging the parents for the cost to house and feed their son while he was detained. The judge determined when the youngman would be released from custody. The rate the county had been spending per individual for detention was enough to assure everyone's attention was secured.

The care staff here at the nursing home facility are in a similar quality of lacking truthfulness as some of those court kids. This morning I had yet another situation where this has been brought home to me, up close and personal.Today is one of two shower days that I get per week. This morning the CENA in charge of my care brought my breakfast in to me and asked if I wanted a shower today? Of course! I like showers, I used to take at least one per day when I was living at home, sometimes two. I tend to feel somewhat less than human getting only two showers per week. You bet I would like to have my shower.

I thought it strange that she would ask that, but she seemed somewhat crestfallen when I answered so quickly. I got the strange feeling that she had hoped, at some level, that I would refuse the shower. After all that would cut about an hour, with all of the preparation and required aftercare, from her day. Nearly everyday I hear from many of the CENAs how understaffed they are, or that someone normally scheduled either called in unable to make their shift or just plain didn't show up. So it really didn't surprise me that she was asking if I really wanted to have my shower today.

I wanted the shower especially be cause the personal cleanliness factor had been so thoroughly mishandled over the weekend. Usually on non shower days I get what is known as a bed bath, some people call it a sponge bath. What ever it is a bucket of water is drawn, brought to my bedside and liquid body wash (soap) and wash clothes are provided. I proceed to wash and clean myself then towel dry.Often the CENA will help me doff my old shirt and a clean new one will be slipped on. That completed, the CENA will help roll me onto my side (remember, I have no strength or control to be able to effect this myself)and then they will use a wash cloth to scrub my backside ending with a swipe between my butt cheeks. I get toweled dry, rolled back face up and a new disposable brief is put on. Not quite as clean as a shower , but passable. This past weekend I did not receive a bed bath on Saturday or Sunday and not until Monday afternoon when the second shift came on at three thirty in the afternoon. The last time I had my brief changed was after my shower Friday morning. I told this to the CENA this morning. Her response was that I don't need to be so passive, that I should put my call light on and ask. Hmm, sounds so simple, too bad it never works out that way. This must be the “standard reply”, sounds like blame the victim to me. It didn't bring any change in attitude when I told her that I did ring the call light. Every time I was responded to in the usual twenty to thirty minutes after lighting the lamp and told, “We're awfully busy now, we'll get to you later”. You guessed it, later never comes.

I get awfully tired of some of the CENAs showing the tendency to scrimp on the services provided and using the, “we're awfully busy right now” reason for not following through with the things they are expected to do. There are the same few who always seem to utilize this slick maneuver. They don't do it all the time,but more often than most of the other CENAs. If they are matched up with certain other CENAs who bring out this tendency in them the problem becomes worse.

So the CENA this morning wanted to know if I wanted a shower. When I replied in the positive she next asked if she could come get me out of bed right after breakfast, get me in the wheelchair, then go take her break while I was in my chair, then come back after her break and get my shower then? That would get my shower finished about an hour earlier making the later part of her shift easier.

Okay but remember, I can only stand to be in the wheelchair for about three hours before my knees, butt and lower back begin to get sore. At that time I will need to be put back in bed. She agreed, saying that would be no problem.

And so the event began, after breakfast I was removed from bed to sit in my wheelchair until her break was completed. Then off to the shower. Shower completed, dressed and my hair re-braided, I was off to entertain myself for as long as I could stand it. As is standard procedure, my bed was stripped and the laundry was sent to the wash. I ate my lunch in the wheelchair, visited a few people and around one o'clock noticed that my bed had not been remade. Tough to be put back in bed when there are no sheets on it. I went to find the CENA to inform her that my back was aching and it might be time to get the bed made and me into it. I was told that they were running really behind and I might not be able to get into bed until second shift. (second shift comes on the floor at two but they have entering the floor rituals they have to do first thing, so second shift is not going to be able to do anything until about three o'clock at the earliest. My back was nearly going into spasms by now.

I can't imagine myself treating anyone like this, but then again I take people at their word. I suppose that some people feel so unable to control their working situation throughout the day that they don't feel as if they have any ability to direct the events that make up their working day. Thus a mere stretching of the meaning of their statements has little to no impact on them. I suppose at the end of their day they do not feel as if they had a good shift. This must be horrible for them to look back on their work and not have any good feeling about it.

I took the CENA at her word to me earlier and went in and turned on my call light, just as she said. Sure enough she came in response and asked me what I wanted. I smiled and told her that my back and knees were really hurting and I would like to get in bed. With a heavy sigh she left to get the sheets and made my bed. But she made a point to do nothing else. I was put into bed at three-thirty by the CENAs on second shift.

After the lack of follow through over the weekend and the non issue of my bed bath and changing of my briefs, I am not a happy resident. I will think long and hard about any efforts on my part to help in making my care taking any easier in the future. I see one of my problems – I have no items of any value to bargain with when these CENAs want to juggle their workload/schedule to make their shift any easier. This is exactly the way everything goes down and it is the same way common street thugs like to operate. Sometimes people like to engage others from a position of power. They often do this when they don't feel very empowered at all. Now, I have to figure out how I'm going to respond to their little problem so it does not continue to be my problem.

Saturday, September 14, 2013

14 September 2013
6:00 PM

Of the middle of September
the regularity and of the kind of sunsets

14 September, the date will probably stick in my mind for a long time. This is the birthday of my former wife. Although she's been absent now for 12 years, it is hard not to remember some of the birthdays of the past. She may be gone now, but she did not disappear suddenly. For the most part she pulled away gradually, like the mist slowly leaving the surface of a still lake on an autumn morning. At first you can hear the loon sounding somewhere through the fog, then, before you know it the fog has lifted and the loon is visible across the lake. Her presence was there and then gone like that fog. She was around but not, at the same time. She gradually withdrew being there, until she could cast a shadow but could not fill the space.

There was a time when I was crazy in love with her. Yes, there may have been some glaring rough patches that I chose to look through with different eyes at that time. However, now in light of how things have played out, I should've been more aware of what those difficult times really had to say to me. On the morning of the 14th I always recall the excitement, the sheer anticipatory joy of the impending birthday. And if you are the one who is waiting to present the one perfect gift you've been considering for a very long time, you can be as excited as a person who should be receiving the gift. For me this was often the case.

There was a time when we were often driving out West to go skiing and we would listen to some tapes that we had made of some of our favorite music. The wife always love to hear the songs that had a pedal steel guitar in them. She loved the pedal steel. Those were her favorite songs. She would often advance the tape just to get to the songs that had the pedal steel featured on them. She made so much fuss over enjoying the pedal steel guitar that I thought I would surprise her and buy one of her very own for her birthday.

This turned out to be a grievous mistake and became one of the most grievous “thoughtful” mistakes I could make. There are a lot more after this, though. You would've thought I would've learned my lesson early on. But, apparently I didn't. You see, I assumed that she was being like me. Expressing great enthusiasm for something that she wanted to do. My mistake was thinking that she wanted to do anything, or even something. Turns out that she didn't want to do much of anything. This is so foreign to me, I just never saw it forwhat it was as it was being presented to me. How could anybody enjoy something so much and not want to participate in it or with it?

I presented the pedal steel, completely assembled and tuned up, along with a small Peavey amplifier. Once she figured out what it was, you would have thought that I had presented her with a rattlesnake. She recoiled. She wouldn't come close. I tenderly tried to encourage her to just make a few furtive strums on its finely wound steel strings. Nothing doing. She wouldn't come any closer than 3 feet to the thing. It was as if it had a big sign draped on it saying that it was not only cancer producing,and radioactive but could cause bad breath as well. She just didn't want anything to do with it.

On another occasion I went to the fancy underwear store and bought her several bra and panty outfits that were quite nice. There was lace everywhere and the finest of fabrics. I bought the most expensive and finest that could be found. They were all wrapped up in fancy paper and were contained in a very nice box for each set. They were met with a lukewarm acceptance and I've noticed that every time she would work her way through her underwear drawer, those were the last ones to be utilized. I noticed, with chagrin, but apparently her most favorite underwear were the pedestrian, everyday variety. She only wore the nice stuff once all her usual underwear were in laundry waiting to be laundered. Even if we had a nice evening out, dinner and some kind of activity, I noticed with great sadness that was always the pedestrian underwear that she would wear. I never got into it with her, but I often wondered if this wasn't more of a comment about how she felt about herself than anything else.

The year is melted by, one dissolving into the other, and each time the birthday season would roll around I would try to outdo myself in getting her a lavish gift. Nothing ever took. There was never excitement, joy or effusive thank you's. The only time I ever saw her happy with getting a gift was when she got a Sapphire tennis bracelet from my father and his wife. They had asked what was requested for Christmas and she said the only thing she wanted was this bracelet. They accepted the request, and cautioned her that it would be expensive, probably the only gift she would get that season. She assured them that it would be okay, that's all she wanted.

She was true to her word, she was extremely pleased, and that was all she wanted. I realized at that point that I have been doing everything wrong. I was supposed to have an account at some jewelry store and if I had done a lot of trafficking exclusively at that place of business she might have been happy. In hindsight, there might be a lesson here. I would hate to go that way though, so we'll just leave it at that. But I learned from my experience there was nothing that I would give that would ever be acceptable, mostly because I didn't spend enough money to get the right thing.

Every year about this time, I recall whose birthday it is, and how often that resulted in complete failure on my part. I tried mightily to get her gifts that were well thought out and were also very much who she was. I just never saw her as somebody want to collect lots of jewels.

Meanwhile, from my experience there are some awesome sunsets at this time of year. The problem I have is that I live most of my life in this little room, on the 3rd floor the window is difficult for me to see out and it aims toward the east. Odds are very against the fact that I will ever see many sunsets again.

There is nothing quite like stopping for a few minutes to take in a setting sun. It is possible to see the actual movement of the celestial orb moving in relation to the horizon. In those silent moments the events of the day crowd up together in those last waning moments of daylight for remembrance, all of the things that occurred during the day, the mass of things that filled up a day. I am often struck with how many there are, and how little time there is to relish in detail each and every one. The moments cram together and I realize the moment to relish them was at the time they were unraveling, for there is not enough time now. Then the sun is making like Kilroy's forehead peering over the edge of the horizon, then slipping beyond the rim of the world, its gone.
See ya'

10 September 2013
9:45 PM

What a day!
The end of summer used to be mellow and easily slipping into autumn,
not so much any more

The day began easy enough, a regular breakfast , nothing outstanding in the fare served up. I still think that the protein component requires some input from meat of some form. I know eggs are cheaper in comparison. But eggs and grains of some sort seem to fall just short of being a complete meal in my book. And thus scrambled style eggs (which hint strongly of in actuality of being rescued from desiccation dehydration) somehow seem to be cheating as for qualifying as real eggs. Loss of gratitude points for using these. Today there was no loss of points as the kitchen actually served up hard fried eggs. I still miss eggs fried over easy though.

I did receive my twice weekly scheduled shower, which was highly appreciated due to my last scheduled shower, last Friday, never having been delivered. Then with my hair freshly braided, I ventured forth in my wheelchair. I got my 35mm digital camera and went down to the ground floor and went outside. It was humid and the air promised to be much more miserable this afternoon. However there was a breeze blowing and I am basically just sitting, I found some shade, in the breeze and just took in the neighbor hood. The neighbor was out mowing her lawn with a push mower. When that task was finished she disappeared inside, feeling the humidity no doubt. The road noises became more apparent, the birds in the trees were able to be heard and the breeze was again moving.

Then an ambulance came up the driveway. This is not uncommon around here, many patients transfer from the hospital to here and from here to the hospital by ambulance. The one annoying thing about this is that when the ambulance personnel are in the building they traditionally leave the engine running. I'm sure there is probably some completely understandable reason from a procedural process as to why they do this. But there are no quick ambulance deliveries or pick ups. The engine is left running for fifteen minutes or more. And its diesel! The fumes collect near the building an the vehicle is parked in such a way that the breeze can't really scour them away, they just collect near the building where I am sitting, formerly enjoying being outside.

Finally the EMTs leave having delivered their patient. The clattering of the intrusive engine by its leaving allows the late summer sounds back into the soundscape. But its different now. The peace of a late summer day is not quite slipping back into the former position it occupied. It the distance a siren can be heard, it is drawing closer. In fact it sounds like it is coming right down the street on which this facility is located on. Then a bright red ladder truck comes charging up the driveway red lights flashing klaxon style horn barking. The drive way is angled slightly up hill from the street giving the view of the fire truck rising up from below the earth with al of its attention grabbing regalia flashing and barking and wailing as it races forward. Let me tell you from a wheelchair position it can be mighty intimidating.

The impressive ladder truck rushed past, up the slight grade to the parking lot where it rounded the entire parking lot in order to be pointing toward the street when it stopped in front od the building. Like a large mechanical dragon the truck had come rushing up the driveway, lights flashing and siren wailing it left no doubt that it was intent on a mission, once it came to rest in front of the building, the lights shut off, and the siren ceased. As the machine came to rest it seemed as if the dragon closed its eyes of red flashing and stopped its wail, then set down on its haunches to await its next task. The doors open and men exited, not in any great hurry or in fire fighting attire. They were not dressed in casual street clothes either. Rather they were in working attire but not equipt to attend to flames. They walked purposefully to the front entrance.

Shortly after that another ambulance arrived, not in as dramatic a fashion as the Fire Truck, but it still seemed to have a similar intent to its arrival. It too disgorged a pair of fully prepared paramedics who unloaded their Stryker loaded with plastic boxes of their assorted technical gear. They too went inside of the building. Both vehicles were left with their diesel engines running. I thought that the engine of the first ambulance was intrusive on the halcyon setting. Now there was a second ambulance fouling the air AND an even larger fire truck, whose engine was even noisier. Their staccato clattering was not quite in sync due to there separate size displacements. The racket of the two idling engines combined with the growing heat and humidity of the day was the perfect backdrop for the diesel fumes gathering in the air. I figured “There goes the neighborhood.” and I too went inside.

The air was noticeably cooler in the front lobby. The emergency personnel were nowhere in sight, which meant that they were already inside the building where the issue of what brought them here was located. Many of the administrative staff were milling about in the lobby, wanting to appear to be busy and yet not quite away in their offices where they couldn't get some snippet of what was going on. Its fun, interesting really, to watch administrative types want to be gawkers more than anything else. Me, I learned a long time ago that whatever has happened will find its way to me over time, all I have to do is remain quiet and listen, then bits and pieces will be exposed to me. I just need to remain calm and available and the facts will separate out from the emotional content. There is something about people, they can't just become aware of something, they see to have to process that new awareness with their jaw muscles, almost like a bovine chewing it cud, before they can settle with the newness of the situation. I made my way to the elevator and pressed the up button.

Before the elevator car arrived I had already learned that there is no fire, that the fire people always accompany a 9-11 call and the event is somewhere on the third floor. Great! Right where I am headed. On the third floor there were the paramedics milling about, ageneral tension in the air and one of the rooms near the nursing station had its door closed. The fire fighters were nowhere to be seen. As it was lunch time and I usually take my meals in my room, if I am not there the CENA team usually leaves my tray in my room on a hospital table tray lowered so I can get to it from the wheelchair. I ghosted in, sidled right up to the meal and made short work of it. As is my custom when I do lunch from my chair, I slid the tray onto a slide board kept in my room for my use. I get the slide board from the wall where it rests, put it across my knees the set the tray on top off that. Now I am mobile and I roll off down the hall in search of the food cart to return my now finished meal and my tray.

No off to play like wallpaper and figure out what may show up.

There is an air of gravitas that permeates the area near the nurses station. People are standing about, some are appearing to be working fervently, quiet but fully occupied, phones are being used, a comment to the people around the desk. The youngest looking police member has the sergeant stripes on his sleeve, he seems to be the one in charge of the police personnel. The paramedics are standing by, alert, ready, but waiting something but what? One opens her [lastic case that looks for the world like a really expensive fishing tackle box and idly picks out a few items and attempts a light cleaning of a few things. The appearance of doing something to serve as a distraction seems to be very strong.

Meanwhile the officer on the phone asks for information from the floor nurse. This is not the everyday line nurse but the nurse who oversees those nurses. Information is exchanged, the pronoun “he” is used and the name of a local elementary school.

After some interaction on the phone the officer comments that “he” did not show up for school today. One of the other officers commented something about another one of these Juvie's. The implication was that now there is going to be more work to do. The other two officers were joking among them selves, in what appeared to be a nervous method of keeping themselves busy so as to not have to confront the enormity of the situation they were dispatched to deal with. Suddenly I realize the third officer has left from my eyesight. The other one, definitely older, chews chewing gum with a nervous ferocity that I haven't seen in a long time. Not even among sports personnel like baseball players or team managers, some of the most fierce jaw exercisers I have ever seen.

The floor nurse is looking shaken as she recounts to no one in particular, that she had just gone in the room to check on a few things (sounds like paperwork stuff), she had acknowledged the woman, turned away briefly looked back and saw her eyes rolled back into her head. She called her name and when there was no response began CPR, but she couldn't revive her. This was spoken with a mixed tone of regret bearing a touch of awe. The image that arose in me was that in spite of a lot of knowledge and a background full of doing these skills before,we are not as able as we would like to believe ourselves to be. There was a shakenness in the hallway that day. The nurse seemed incredulous, the young officer continued with his phone work, the one officer remained out of sight, the other, older one chewed his gum relentlessly and leaned against the chair rail as if his feet really hurt. The EMTs were busy busying themselves, the door to the room remained closed.

The unavoidable sense was that someone had died that day. There was also the strange sense that something should be done, but what? Those who were in charge were doing what was expected, the next items on the list of priorities were systematically being attended to, but there was this huge sense that something needed to be done, NOW, somehow calmly talking on the phone or waiting for the next command decision did not seem to be it.

Later I was downstairs, I saw the hearse pull up through the window. Automatically I knew why they were here. I was down stairs, participating in a community birthday party set once a month for everyone who has a birthday that month. It is one time we can get a better quality ice cream than that which is served to us occasionally with our meals, on an irregular basis.
Granted it is only Neapolitan from a five gallon plastic bucket from a nearby chain store, but for one who used to make ice cream at home and of many differing flavors even this choice was a reprieve from the lowest and cheapest type of ice cream we have traditionally been served. At least it was cold, not semi melted the like the gelatinous imitation stuff we get served. And the imitation flavoring is different from the other imitation flavoring we are often served.

About the time the group was singing along with the gentleman who was hired to entertain during this unfamiliar get together, I spied a gurney with a covering over the entire load being wheeled from the employees entrance toward the waiting hearse. The load beneath the covering must have been huge as it arced upward from one end to the other. The person under that canvas must have been huge. Judging from the work that those maneuvering the load were putting out, it was no easy task. There was a pause while the rear access door was opened, as the gurney made its way into the hearse the rear suspension of the vehicle went down a substantial amount, maybe five inches or so. The two gentlemen who arrived with the hearse shook hands with the CENA who was helping them move and load their cargo. Th erear loading door was shut and the hearse bearing the huge mound drove slowly off.

I don't think any of the others in that room saw the scene unfolding outside that day. I felt an immense sadness, that woman had arrived from the hospital earlier that morning, she wasn't here one full day, now someone is going to have to inform the family, funerary arrangements are going to have to be made and gone through, and through the whole series of events the part that I got to see unwind will never be known to those to whom this woman meant some thing.

I never thought as I saw my house receding through the rear windows of the ambulance as it took me to the hospital that I would ever end up in a facility like this, experiencing these events. None of this has turned out as I had expected my later years to unfold. I had such great plans … to keep working, slacking off little at a time, taking pictures, making trips … All are just memories of dreamt of possibilities now.

For now I'm not riding in a hearse under a large covering. But that is little consolation right here right now.

After arrival, idling, quite odious.

The works, not needed today.

Saturday, September 7, 2013

7 september 2013
12:30 PM

Thoughts on the thoroughness of caring for others
sometimes it can be carried too far

I think I am going to survive the headache I began the day with. Its kind of sad to think that what I am growing used to beginning the day with as a bodily disfunction, and one that lingers so long and makes itself known to me whether I want to be reminded or not, is becoming standard. Time was when I awoke to someone next to me in bed, later that grew into more of a chore. Then there were various dogs who upon my waking would nuzzle my hand eager that I was finally awake and available to play with them. Sadly even the best dogs don't last long enough. What I have now is a narrow bed, in which I am the only one around, AND a headache to boot.

I just finished lunch, or should I say the noon meal. Lunch has a little more elegant sound that what is served here. Many times the quality that I have learned to associate with certain words, nouns in particular, are suggestive of a wholly different tone or character than what is presented. This reminds me of a sales job where someone is trying to up-sell something to be accepted for more than it actually is.

Lunch is say a club sandwich served with a side order of soup and an iced tea or lemonade in a cafe, or if dining at home a tube steak served with a pile of potato chips and some grapes or an orange – with the peel still affixed. Not here though. We are treated to something delivered on a cafeteria tray and the finest in unbreakable plastic ware in the most unappealing gray-green color, I suppose this has been chosen so the kitchen staff can break into the occasional impromptu intramural rugby match should it come up.

The meals are often served with a dome of the same gray-green plastic covering the plate. I suppose this is to keep the food beneath warm, although that rarely happens. The route from the kitchen to my bedside is long and arduous, the food, if it was once hot, arrives politely tepid. Or maybe it is a cover to keep stray hairs and other airborne detritus off the food. That could be it. Sometimes that cover appears like some strange hard shelled entity in the act of having coitus with the plate beneath, although I can't imagine anything coming from the kitchen that would be that attractive. After the meal I have often had the desire to fling it across the room like a frisbee, its aerodynamic aspects do seem appealing in that respect.

As you can see the noon feeding is to be considered more along the lines of calorie loading than actual food. Its better that way.

I have given up the notion of ever having a good cup of tea again. It has been my experience in both of the nursing homes I have been in that the idea once you enter the gates, is that never again will a good cup of tea ever be able to cross lips in these facilities ever again. No exceptions, period. I don't know why so vehement a hatred for tea, could it be a vestige from revolutionary times? Come on folks get over it. King George is long gone now. The intense emotion of dislike is so great that in both facilities the microwave ovens have been removed. I have offered to purchase a kuerig style coffee and tea appliance, no dice. I am even told that the State has declared that fines will be handed out for even having such possibilities of creating overly warm water available.

Amazing! I used to make tea and coffee at my house all the time, the State never came skulking around my door then, concerned about my hot liquid imbibing practices at that time. Apparently the State has put such fear and loathing into these facilities with their concern for hot water that I haven't had what one would call a hot shower yet. Good thing my former wife isn't living here. She would take such a long and hot shower that the only way she figured she was done was when the hotwater tank ran low on hot water, the steam would no longer fill the bathroom and the mirror was clear and dry. Around here the CENA staff apologize for the lack of hot water as they adjust the temperature before slipping me in the shower. That's all right I tell them, at least its warmer than the snowmelt we used to have for bathing when I was backpacking in the Rockies of Wyoming.

To their credit they do serve hot warm water here for the purpose of making tea. However if this is for credit I would assign a D-minus as the water is barely tepid, for brewing good tea the water needs to be just beneath boiling. Dunking a teabag in the “hot” water they serve here will only create brown stained water. The water is not hot enough to release the flavonoids contained in the tea leaves. A complete waste of time and good tea leaves. Imagine a young tea plant growing its leaves in the open air somewhere across the world, to make the best tasting tea possible. All of the effort to collect sunlight, pull supporting elements from the ground, being picked, carried, and dried carefully, packed with equal care, shipped around the world just to have some tin pants legislator decide that he and a few others are going to make a law, because they can, regarding the legality of how some people will be deemed able to appreciate their hot beverage of choice. How arrogant! How over bearing. How rude. Welcome to the Nanny state.

Don't worry, it will be here for you too, waiting to take your choices away and give you nothing choices in return. Enjoy your tea and coffee now for here they are just a distant memory. I remember pouring the HOT water fresh from the tea kettle, recently boiling, into the borosilicate glass mug. Watching the tea staining the water with dark swirls trailing from the teabag under water like so much smoke within the mug. The entire container growing darker as the tea steeped. The anticipation growing to appreciate the nectar of some fresh tea. Except that, what I can dredge up are visual images but not any sense of taste or smell that I recall.

What I wouldn't give for a cup of Lapsang Souchong with a little honey, or some Dargeeling with spice and orange peel.

I just love being cared for according to some one else's standards. Like yet one more step toward having the very last vestiges of my humanity smothered away. Can you hear the sarcasm dripping from my voice?

I can almost taste it

7 September 2013
7:30 AM


I woke up this morning with a sinus headache – just like yesterday morning. Just as most mornings this year. After a few weeks of me calling for Excedrin and a Claritin, the medical team thought maybe I had a sinus infection. They called for an X-ray from the portable lab. The machine was called in at six in the evening – very impressive. The results were determined but I was never informed. After the Physician's Assistant coming to my bedside and discussing with me my history with sinus headaches, my allergy history, and a few gentle jabs at discounting of my ideas based on my experience. Then, somewhat arrogantly, deferring to his education as the basis for his conclusions (which contained a whiff of medical school snobbery stacked up against my mere experiential understanding), the X-ray was recommended (as if I were actually going to buy this myself).

So when the results come back the next day - mind you, this is fancy new digital production, no developing films and courier carrying films to a radiologist, this is downloaded once the portable machine gets back downstairs to the truck, digitally processed then electronically zipped to a waiting radiologist just waiting on second shift scheduled hours to peek at the electronic version of the inside of the empty places in my forehead. After all of that production it must have been embarrassing to get the results.

Of course, the results weren't given to me, I am just the bearer of symptoms. I had to ask the nurse what the results were a few days later. “Oh, there was no infection.” Isn't that cute. All of this buildup, the use of new equipment, 21st century technology, the all hours of the day kind of production, I suppose that the results of all this technological display was somewhat of a downer. I am somewhat disappointed by the willingness to practice mute silence of the results and the sharing of said results amongst only a certain audience, which did not include me was just beyond comprehensible.

So I am assured that my headaches are not the result of something dire. They are just headaches. Whew! That makes the almost daily forehead pain and when it creeps down into the bridge of my nose area and up into the top of my head and around to the temples not quite so worrying. It does, however, nothing to diminish the pain with which I deal regularly.

Oh well, I suppose that is what modern medicine is like these days. I wouldn't know, really, for in this facility I was not allowed to determine who to work with for my medical health like I always did when I was in charge of my life, before facility living. Somehow, since I have come to live in these care facilities, that old fashioned idea has been tossed out. I am assigned the doctor with whom I am expected to look to for my health care.

I have lost a lot of things beyond the required sale of my house, dissemination of my savings, the investments I had set aside for my retirement, all of the art I had collected, the photographs, the numerous interesting tchotchkes I had collected – so much that I had developed to look back on and remember moments of my life. All gone. Too many people inserting themselves into my life and acting like their influence was something I should be thrilled to have mucking about in my life. Or that I was some kind of ingrate for whom they have done what they have. Sounds like some sort of terrible twist imposed by a hidden control fiend malevolently bent on disrupting my life and depriving me of anything I knew of from my past.

So now its nearly ten in the morning, breakfast is completed, the medicine has been ingested, the Copaxone injected and my headache continues unabated.

Oh well …

Wish you were here.
One of the exhibits at this year's Burning Man

Monday, September 2, 2013

2 September 2013
Monday - Labor Day
5 PM

I survived the weekend and holiday. No calls or visits from my family, what else is new (!?) Throughout the day I have been able to hear friends and family visiting other residents, their voices carrying down the hall. The CENAs were talking about the holiday yesterday, asking if they were going to go to so and so's potluck today? I hear various resident's televisions chattering on about how this holiday means getting together with friends and family to celebrate the ability to labor and that we honor it in this country. Bull Shit! You couldn't tell by me. I had one friend call earlier this afternoon when I was out, she at least left a message. I have no calls or visits even from family members. Two of whom live here in town. The celebration, the gathering together the cook outs and friendly get togethers are only a distant memory now. If I use the present surroundings as a guide, those memories are quickly fading into a memory that could easily be confused with a fantasy, what I wouldn't like to happen.

Matter of fact when it looked like I was going to have to go from hospital to nursing care I received a lot of pressure from one of my parents to consider a nursing home facility that they have had experience with in Jackson. I didn't really want have to go to Jackson, having grown up there, it was nice place to be from. But I capitulated of concern for my father having to drive roughly an hour from his residence to where I lived in the East Lansing area. As far as making it easy for him to visit, that really hasn't worked out so well. I get a few visits, minimal at best, it may be because of his illness or age. I am not sure if I had chosen to participate with nursing care where I was living if his visits would be any different. But I sure would have had more visits from my friends who live in the East Lansing Okemos area. As there's a few of them who have managed to come down here, over an hour away, and their time is equally valuable to them.

So I let family connections trump my friendships. That hasn't turned out very well for me. My friends make an extreme effort to come see me on a semi regular basis. My youngest brother, who lives about 10 min. from where I am now has not been here to see me since the beginning of May. Even then he was in tow of my father. In 4 months that is the only time he has managed to visit. It may be because he's embarrassed and feels no real connection to me.

This could come from the fact that he really goofed up closing up and selling my house. Although he agreed on what we were going to do in the process of going through my possessions, he reversed himself and without getting my permission proceeded to throw out or give away things that he thought were his privilege to do so and all the rest he turned over to an auctioneer to dispose of. I told him in “No” in no uncertain terms that that is not what I wanted to have happen, he insisted on talking right over my complaints and then told me that if I did not shut up and do as he wanted he would take me to court and have me declared incompetent. Then he could do whatever he wanted. I indicated that that is not going to happen. He was made power of attorney just for the purpose of selling my house, not to run my life. He of course insisted that things are as they are now because I signed a power of attorney he can do anything he wants with me. I would imagine that that gross misunderstanding combined with the absolute disgusting way he handled himself and my affairs might possibly make him a little embarrassed to show his face around me.

And my father? I have no idea what is going on. It used to be that on holidays like this I would get a phone call and a request to drive down enjoy a day at the lake, and have a little something from the grill out on the deck. I would stay until about dusk as we chatted about stuff and things, then I would drive home. Once I became unable to drive myself and walk, necessitating my being in a nursing care facility, all that stopped. No discussion about it, no reminiscing about just a few years ago how we used to do this. Just stopped. Finis. No mention that we ever used do such things. No current discussions about some of things that we used to talk about in this relaxed moments. Now everything seems to be only about the present, and we aren't saying anything about that anyway.

And my new proximal family? Here at the facility? Oh it's just peachy. Some of the CENAs are delightful people and try their best to make their actions with me asdelightful as possible. But there is no family tradition. And they have to do things within the parameter of what is allowed in order to keep their jobs. But even some of the simple things that one recalls from holidays like today, when visiting friends and family and enjoying the meal together, are not available, not within the parameters of what the facility thinks is good for us, or within their budget, or I ever hear we just can't do that.
Now this is how a burger should look

I miss sitting around taking the easy, having great discussions while feasting on some burgers and brats cooked on the grill, eating potato chips in sipping some cold soda pop - an A&W root beer sounds nice, or even a Canada dry Ginger ale.
Mmmm, homemade too

Not quite by the gallon like the old days
We seldom get chips here, and those are usually the little teeny tiny lunch pail size packages. There used to be soda pop but it was only the artificially sweetened kind. I suppose the reason for that is they wanted to make sure that none of us hidden diabetics were going to be challenged at all, or they were killjoys and just against anyone to have any fun. As for a little something cooked out, well they did host a cookout last Friday but it was not anything like you would recall from home. The choice was hotdogs our hamburgers, limit one per customer. The hamburgers were those uniformly made types that are about a quarter of an inch thick and 4 inches across. You know the standard machine made hamburger. In like the hand made burger molded by hand and about half a pound each that when cooked just right are crunchy on the outside and medium rare on the inside. (I'll probably never see one of those kind of burgers again. Possibly served with some sauteed mushrooms and onions, two different kinds of cheese melted on top and a slice of tomato.

One of the things I really miss here is my ability to make choices and then follow them through. This being taken care of at the level that stretches the point of credibility and/or competency of others is stooping pretty low and getting old fast.

Oh well, the holiday is nearly over. I have expounded on how it seems like every other day around here. Maybe these days serve to remind me how special those days were. Actually there is something special to every day, but there is a very good job of hiding that around here. Usually the day is winding down, the wind on the water is letting up. The sun is nearing the point of kissing the horizon, the puffy clouds that scudded across the blue sky overhead have disappeared, while near the horizon a layer darker tha the surrounding sky gathers in counterpoint to the sun headed for the horizon. These evening hold the relaxed joy of the day and the promise of an evening fit for planning of the future. Somehow the future promises do not look to much different from the regular sameness of the recent past.