Retro-Blog 2009.12.15 - The Night of The Violently Demented

Dad update, the night of the violently demented, and way too much more
Michael Kepler
December 15, 2009   · 11 min read  · Shared with Public

During the day Monday, while my son and others were with him, my dad went from semi-conversational to mostly unresponsive.   Just as it had happened previously, the transition occurred while nurses were tending to him and family members were out of the room.  This obviously makes family members wonder if he is being sedated by the nursing staff.  Upon questioning, they deny that this is the case.

This is an ongoing issue I may have failed to mention in my previous update.  We can never be sure how much of what we are seeing is due to medication, rather than his actual condition.  We are repeatedly assured by staff that he is not being sedated.  But clearly something they are doing when they interact with him is pushing him back over the line.  Either that, or it's just an amazing coincidence.

I guess I can lend the medical staff some credibility here, just due to the fact that they clearly did not sedate a number of other very vocal, active and even violent patients over the course of the night.  

One elderly patient completely trashed his room, breaking glass and cutting himself in the process, and impressively making abstract blood-art of the walls.  Police were called in to help the nurses get him into restraints.  Unfortunately, he was moved to a closer room, so I spent the night listening to this remarkably energetic old man constantly yelling for his son to "bring your pocket knife and cut me out of these straps.  I'm trapped up in this silo."   When the nurse attempted to distract him, and to evaluate him, by asking some simple questions, he was very quick and confident in his answer that the year is 1979.  It would be difficult to convey just how loud this guy's voice was.  Every time he yelled out his son's name, it would make my dad twitch and utter a startled grunt, followed by a short, weak, coughing fit.

Meanwhile, directly across the hall, was another loud and obstinate old man who kept setting off his very loud bed escape attempt alarm, which would be followed by lengthy arguments and wrestling matches with the nurses.  At one point, when a nurse attempted to remind him yet again that he was in a hospital bed,  it was very late, and he needed to rest, he replied: "I don't care if I'm in a barn; I don't want to sleep on this damned couch!".

That ends the dark entertainment portion of this article, but please read on if you want an update on my Dad.

I arrived for the night shift, at about 10PM, just as they were transporting Dad back to his room after the CAT scan.  My son Tony, was still there since leaving work. My younger sister's husband Jason, and my older sister Renee were there, too.  She, apparently, as not left the hospital for more than a couple of hours at a time ever since Friday.

At this point, my dad entered a period where his response to any external stimuli was to say "I love you, darling".  He would also occasionally utter this phrase seemingly spontaneously.  The only other verbal responses, if someone was trying extra hard to talk to him, would be seemingly automatic, either repeating some portion of what had just been said to him, or making generic responses like "Ok".   

At one point, he appeared to actually follow an instruction to cough from one of the nurses.  I'm sorry to be skeptical about this positive sign, but he was coughing often enough, and the nurse was patting his back hard enough to loosen things up at the time, so it may have been a combination of coincidence and physical response, more than a cognitive response to the instruction.

I spent most of my time sitting next to him at eye level.  He would frequently open his eyes in my direction, but I was never sure if what we commonly consider to be "eye contact" was actually happening.  He seemed to be in a different place.  Fortunately, with all of the "I love you darling", it seemed to be a much better different place than some of the other residents of the hospital.

He gradually became less responsive, and the "I love you darling" period ended.  During the night, he occasionally seemed to be asleep, and at other times was weakly restless and would open his eyes and move his limbs around a little.  He continued to cough fairly frequently, but was, fortunately, on his side for most of the night.

A doctor came in and talked to us a couple of times during the first hour or two after the CAT scan.   He was very adept at finding very time-consuming ways to say "I don't know anything helpful" without ever saying anything close to those actual words.   He had no idea what Dad's previous baseline cognitive or physical function had been like, and was not interested in hearing about it from us.  He also seemed very frank and completely unapologetic about having virtually no communication or coordination of care with the other doctors who have been in and out of this case.  The idea of picking up a chart and reading it seemed too much trouble for him and his colleagues, and for all I know, putting adequate information into that chart to assure some continuity of care was probably too much trouble for all of them as well.

Most frustratingly, the doctor consistently characterized my Father's condition as a linear decline from the time he had been admitted until now.  This despite repeated attempts on our part, particularly mine, to point out to him that Dad's cognitive function and general strength seemed to be going through cycles over the past few days, getting better then worse repeatedly.

I was left with the impression that the medical staff has a "one size fits all" diagnosis and non-treatment plan for every patient above a certain age.  The doctor talked his way around my point that there are plenty of men older than my Dad who write books and run companies, and thus "he's just old" isn't really a credible diagnosis.   I resisted the urge to suggest that there was probably even a man somewhere older than my father with the power to fire any doctor on staff in this hospital.  I don't know this to be the case, of course, but it is a reasonable conjecture.

I understand that the human mind and body are extremely complex systems, and in any given case, there are severe limits on what can be definitively known about the condition of a patient, and even more severe limits on treatment options, all of which carry their own, largely unpredictable, risks.    As a family member of a patient, it is probably nearly impossible to ever be completely convinced that everything reasonably possible is being done, especially when things are not going well for the patient.

And then, there are times when it seems fairly objectively certain that simple and important basic care is being neglected.

The battle to get the CAT scan was won by Tony and Jason before I arrived.  The next battle, which took most of the night, was to convince the nursing staff that Dad was running a fever and that this might indicate something which should be brought to the attention of an actual doctor.   We only had a partial victory, in that the nursing staff did eventually confirm that he had a fever, but only in the course of their already scheduled rounds.  Their response was not, of course, to inconvenience any actual doctor in the middle of the night, but rather to administer Tylenol.  This however, ended up being accidentally helpful for winning our third battle of the evening.   The nurses had to administer the Tylenol non-orally, as Dad was too weak and unresponsive to take it orally.  Later, in our continuing campaign to get them do do something about his obvious dehydration, and our requests for IV fluids to be administered, the nurse invoked a roadblock of "a swallowing evaluation would have to be conducted before we could do that".  She made it sound like this was some kind of complex "wait until morning" kind of procedure.   Fortunately, our verbal assurance that previous nursing staff had obviously performed such an evaluation when they resorted to non-oral administration of Tylenol was sufficient to convince her to order IV fluids and bring some ice chips.  Again, this is hardly an all-out victory, as it took all night, and when I left at 6AM, we were still waiting for them to follow through with the IV fluids.

It had been my plan to leave when my younger sister returned at 9AM, but I have to admit that I found my presence to be depressingly pointless and unhelpful.  Dad at no time appeared to be aware that I was there, my older sister only left the room a couple of times for an hour or two each, and my son remained all night, only getting a four hour nap in a freezing cold waiting room, with a full day of work ahead of him.   He was awake and still staying with my Dad when I left.  All of the minor victories in getting some basic care issues addressed were won more by my son and Jason than by me.  I suppose it is just as well, as I nearly fell asleep at the wheel in the last few blocks on the way home.

This marks the end of the Dad update, and the beginning of the making it all about me.  Those who understandably don't give a shit about what a self-involved asshole I am can stop reading here.  But, if like me, you find self-involved assholes to be oddly entertaining, or just enjoy the warm feeling that comes with a good hate, feel free to read on.

I recognize that a lot of my criticism of the doctors is a projection of my own feelings of guilt.  I have this strange sort of third-hand guilt.  I feel guilty that I don't feel more guilty about not feeling as emotionally engaged in my father's situation as I should be.  I feel for him the same degree of basic human compassion I would have for anyone in his situation, no more or less.  Even worse, my strongest emotional response is entirely selfish.  When I get to be my dad's age, and possibly in similar condition, which with the way time flies lately isn't that long from now, I want better care than this.   I am horrified to think of myself in his condition, receiving the same careless and passive "he's just old" treatment.   I hope to be the guy who trashes his room and keeps everybody up all night yelling nonsense.

Having raised what are potentially "end of life" type of issues, at the risk of being redundant with things I may have said or written before, I wish to make it clear:  I want to be as big an inconvenience to as many people as possible for as long as possible.  In other words *DO* resuscitate me, over and over again until you can't take it any more, and then have someone else take over.  DO NOT PULL ANY PLUGS.  I assure you with the utmost confidence that I fully deserve the full measure of any suffering I may appear to experience in the process.  I also assure you that you probably fully deserve the full measure of the discomfort that witnessing this horrific spectacle may cause you,  whoever you are, imaginary person who at least pretends to care enough to be there, if any such person might exist at such a time for me.

Also, for any period of time that I am to any degree unresponsive yet alive, I wish for there to be a radio near me tuned to a classical music station, or some equivalent thereof, even if you don't believe that I can hear it.  It can be quiet and very near if there are concerns about the noise disturbing others.  Avoid opera if you can with convenience.  Beethoven, Bach, early 20th century ballets and late 20th century minimalism are all great stuff.  Not a huge fan of most Mozart or the Baroque period, either, but I can deal with it.

I do NOT want any self-righteous evangelical zealots yelling prayers in my face.  A proper preist administering formal last rites is acceptable.  Quietly praying the rosary in my presence is also acceptable, but I mean *quietly*.  And, no, I'm not a real Catholic, just more of a "fan" of the original church, more in the ideal than some of the less than ideal practices over the years.  I feel much the same way about America, but I *am* a real American.

Carrying this out to any possible memorial service, less talk is better, and traditional ritualistic stuff is preferred over more self-righteous evangelical masturbation, especially from some asshole who didn't really know me.  The music is what matters to me.  During any period of time leading up to any unavoidable talking, I wish for the ambient album "A Blessing of Tears" by Robert Fripp to be played as background music.  After any yammering is done, everyone has to stay put for the entirety of "Here Comes The Flood" by Peter Gabriel, preferably in one of the simpler piano arrangements, or my own cover if I ever finish it.  It's only about 4 minutes, and it's a great song, so I think you'll survive the ordeal, no matter what your "I'd rather be..." bumper-sticker calling to you from the parking lot says.   When finally released from this gruesome event that nobody really wants to attend, especially me, you are to be played out to the tune of the closing theme to Mystery Science Theater 3000.  It would be extra awesome if that could be played live on a real pipe organ, but I know that's probably asking way too much, especially coming from a dead guy who won't even know the difference if you play polka music while you piss on his grave.   I'm not even aware of an available transcription to sheet music.
    
1 Comment

Marilen Wood
Thanks for the update, Michael. A few questions I would like to raise (not to mention some unsolicited advice.) (Sorry about that.):
1) Is it time to be moving your dad to a different (hopefully better) hospital? This one can't be the only one around. I promise you, not every hospital has an entire staff holding a "he's just old" attitude.
2) Failing that, is it time to be directing your complaints up the food chain? Maybe you could talk to nursing supervisors, heads of departments, state agencies. There is absolutely no excuse for any of this! Document EVERYTHING on paper, not just here, and start talking to people. If you're not up to it, sick Patricia on them. (If nothing else, it will be entertaining to watch.)
3) You wrote, "...I have to admit that I found my presence to be depressingly pointless and unhelpful. Dad at no time appeared to be aware that I was there...." You also wrote, "..., for any period of time that I am to any degree unresponsive yet alive, I wish for there to be a radio near me tuned to a classical music station, or some equivalent thereof, even if you don't believe that I can hear it." This would indicate to me that you think you would be aware on some level of what was happening around you. If that is the case, how can you be so sure that your dad was unaware that you were there? You might be right; however, you have no proof.
I hope he is able to come out of it soon and tell you himself. Take care of yourself; that goes for the rest of the family too. Let me know how it goes.
-- Marilen

        12y