## 251208, Monday: insights, incidents, interludes, and inspection

It is good that the nursing staff is erring on side of comfort for Mom, as
when queried about her current pain level, her answers are sort of ambivalent.
She's having more and more difficulty forming audible sentences.  I asked
if she actually has all the words lined up in her mind and the difficulty
comes at the brain-to-voice interface; she claimed yes, but I'm not sure the
brain is fully engaged either as some of the utterances I *can* understand [few
and far between] make very little sense or reflect some delusion she's seized
upon such as being able to go back and live in the house.  The painkillers are
kind of turning her into a zombie, but that's what palliative care is all
about.  In somewhat more lucid moments, particularly when they sit her up for
mealtimes, I get a little more out of her.  In between she's just sort of
blankly staring at the ceiling or the high-mounted TV on the opposite wall
if it's [rarely] on, or rolling her eyeballs up under the eyelids [which the
nurses can't fully explain, but that's usually something we all do when we're
dozing off.  That's probably the essence of it.  Any external movement,
however, attracts her immediate attention.

Two nights ago she had an, uh, "incident".  The Hospice folks had received
a report from the nursing center [who could have called me directly!] that Mom
had tried to get out of bed around 1 in the morning, fallen, and apparently
whacked the right side of her head on something and wrenched her neck a bit.
I was up around 5:30 AM that morning and suddenly got a voicemail notification,
although no *call* had come in.  They'd tried to call sometime earlier, and
evidently my phone had fallen off the network around then -- possibly because
Comcast tends to do testing and reconfigurations in that time window, so
they probably donked my connectivity for a while.  The message informed me
some of what was going on and to call the source number back, so I did, and
got the night "triage" staff up at Hospice who had taken the report.  Mom
had been patched up by the nursing staff and put back in bed, so she was
mostly okay, but I headed over there much earlier that morning.

She had a couple of bandages on the right side of her face and an ice pack
behind her neck, and said her neck was really hurting when she tried to move
her head.  Even with the running doses of dilaudid.  So the staff wanted her
to just take it easy today, no outside adventures, and try to heal up whatever
she might have injured a bit during all this.  I told her somewhat firmly,
"okay, no more late-night solo antics, ok?"  I think she understands.  She
still kind of looked and behaved like hell that morning, and had me wondering
if today might be "the day".  But she brightened up a bit when lunch showed up.
With people in this situation, even if it looks like "transition" time, they
can hang on far longer than anyone expects.

What's weird about this is how common such self-delusions of capability may be
among incapacitated patients -- back in 2017 my dad had something very similar
happen in the nursing facility he was in for a while.  As far as anyone could
determine, he tried to be a hero and get to the bathroom himself without help,
wound up somehow twisting around and falling while gripping the doorframe of
the bathroom -- tearing up one thumb rather badly in the process, maybe on
the hinge plate.  The staff later found him on the bathroom floor with blood
all around him.  He claimed to not really remember what happened.  So now for
Mom, they've got the overall bed elevation fairly low and these big foam
crash-pads on the floor lined up with the bedsides.  Now, before you ask "why
not full-length bed rails", some obscure part of Florida elder law regards
those potentially as "restraints", and the facility doesn't want to get into
that argument and limits that sort of hardware to small grab-rails to either
side of the head.

Yesterday we finally resolved a logistical clusterfuck about the oxygen
concentrator they put her on.  Y'know, with the typical clear tubing and the
little fitting into the nostrils, called a "cannula".  Her pulse-oximeter
readings were a bit low, so the staff wanted to try and keep the blood oxygen
a little higher.  The nursing facility supplied an oxygen machine, but the
issue was that it came from some rental outfit that wanted a lot of money for
it.  If the *hospice* facility supplied one instead, and recall that they're
still involved in handling Mom's case, then that rental cost is covered by
her insurance.  So some guy called me out of the blue from Hospice and said
he had one ready to deliver, but since I knew nothing about this yet I wated
to ask the nurses if it was needed.  Turned out they had actually ordered it,
as a bit of a cost-saving hack for us, but then I couldn't reach the guy with
a return call.  After a day and a half of phone-tag trying to confirm all this,
a guy finally showed up yesterday with a different unit and the swap was done.

I looked up how oxygen concentrators work, and it's kind of fascinating.  They
use a molecular-level filter made of "zeolite", which attracts the nitrogen in
normal air and traps it, still letting smaller molecules through -- primarily
oxygen.  So there's an intake, an air compressor and cooler, and then a valve
system switching between *two* zeolite filter canisters.  The problem is that
once a filter bed has trapped enough nitrogen, it can't anymore, so the valve
system switches the flow to the second filter and lets the first one "dump"
its nitrogen back out.  So this machine in the corner keeps going "thump,
*psssshhh*" about every five seconds, maintaining a roughly 3 liters-per-minute
steady flow of somewhere north of 90% oxygen concentration out the delivery
tube and up Mom's nose.  Look up some of the videos, it's rather ingenious and
eliminates any need to mess around with tanks.  It can run continuously and is
quite a bit safer than tanks, and the zeolite canister contents only need to
be changed out after tens of thousands of hours.  The downside is how it adds
to overall room baseline noise level.

I finally finished reading the thick booklet that the hospice house sent
along with Mom when they moved her to the Carroll Center.  It's a pretty good
resource about the whole "death thing".  I found a link to the online version:

   https://suncoasthospice.org/patient-and-family-guide/

It's a bit wordy, but has a lot of detail on what to expect from someone close
to death, and as they pass.  Various people have also suggested that as death
nears, the patient goes more or less comatose first, not really parsing what
or who is around them.  So if that plays out, Mom may not get her wish to die
holding my hand and actually *know* about it.  This *is* fixable, but we are
unable to do it in this day and age and state.

The laws around medically assisted aid in dying, where humans are concerned, are totally ridiculous. I want everyone to watch this brief movie clip; it's less than three minutes long and a real tear-jerker. If we can do that for pets when they've clearly reached the end of the line, why the *fuck* can we not provide such relief to humans?? Religion, that's why. Stupid laws driven by stupider beliefs, not to mention monetary greed, preventing the equivalent of assisted suicide even when desired and requested. A very few US states have enabled this along with various other countries, but usually restricted only to known-terminal patients. Look up "death with dignity", and organizations like Compassion and Choices or Final Exit, who are trying to get many more US states to at least adopt similar legislation, if not make the process accessible to more people -- the ones that are just "done with life" for any of a hundred reasons, but aren't terminally ill. Look around any nursing-home type of setting; many of those people are laying around or hunched over in wheelchairs in a semi-catatonic state, *waiting to die*, and nothing can be done to mercifully hasten the process. Anyone remember how the thanatorium in "Soylent Green" worked?? Wouldn't that be a far better option? The caveat is that the cocktail needs to be documentably self-administered by the subject, to avoid any accusations of foul play.

This afternoon some guy with a guitar stopped by for some in-room "music
therapy", which is apparently a thing; he actually works for the Hospice house.
We suggested a classical theme at first, but then got off into some Beatles
stuff, not my fave, and I didn't really like his singing style, but I suppose
it brought a little cheer as the next dose of painkillers gradually kicked in.
I asked if he knew any cinematic video-game music like Skyrim soundtracks; no,
because he hadn't found any solo-guitar arrangemnts.  He'd probably have to
write that himself.  He actually prefers instrumental metal, as do I, but
around here there aren't a lot of requests for that.  Around the campus they
actually do quite a bit of other music activity; there's a resident choral
group, and various local artists come in from outside for regular gatherings,
including in the lobby of the nursing center a couple of times a week.

Back at the house, early sorting continues.  I had a big "shred party"
yesterday, disposing of old redundant financial statements and the like but
keeping the most recent stuff that would still be tax-relevant.  I moved all
of the file-folders she had from one of those double-height bottom desk drawers
into a nice compact box so I can take the remainder with me, as there are many
old memories and correspondence in there besides bank statements and doctor
invoices and receipts from hearing-aid places, some of it going back to the
'80s as Mom came into her own as an author.  I found junk like empty binders
and hunks of cardboard that wouldn't have any use going forward, so that could
all go.  This morning as I put the bin out for collection, I taped a sign
onto it saying "HEAVY!" and marked the bag full of shred inside as such so
the pickup guys wouldn't bust it open by mistake and send tiny paper flakes
everywhere.