## 251211: Life kind of staggers on, if trending downhill

First, I updated the previous section a little bit toward the end, adding real
links to some of the dignified-death organizations and throwing in a picture
of some *real* Soylent Green just for fun.

Most sources say that lucidity becomes kind of a rollercoaster around this
time, with intervals of coherency and ability to converse, followed by times
of complete nonsense or pointing at what must be hallucinations.  In general
Mom can read words and even speak them aloud, but is basically extracting no
meaning from them most of the time.  She'll pick up some paper with writing
on it and just stare at it for 20 minutes with no glimmer of understanding.

The word "transition" has been mentioned more than once, and I referenced it
in the previous page.  It's the time when a body truly starts dying, and desire
or even ability to take in food or water drops off (she's not there yet) and
interaction becomes almost nonexistent, almost a vegetative state.  That's
often a day or three before actual death.  But from where she is now to that
tipping point, nobody can tell how long that will be.  She could hold out to
Christmas or beyond for what anybody knows; that's just two weeks from today.

Thus, I don't know when or if I'd have time to travel back home and down again
in between.  I had a good phone chat with my neighbor up north this morning,
and told her about the whole situation, as she's not on the internet at all
so I couldn't email.  She said everything up there had been calm all along,
albeit quite cold.  Not too worried about it myself, although I've been curious
if the heat pump is actually working right as I did *not* top it up as
heating season began -- it didn't seem to need it.  There's backup electric
heat set up anyway, so the house isn't about to freeze down.  So I can likely
hang here well into January, only having to cycle the post-office mail hold,
and just stick it out until the end.  But nothing can promise that either way.
Said neighbor also gave me some perspective about cancer progression and
symptoms, as her husband had succumbed to prostate cancer not that long ago.

I am trying to use this interim time period usefully, and besides trying to
start organizing the house contents, have taken on a new project.  There are
five large artist portfolio-envelopes in one closet, full of Mom's original
painted artwork for the I Ching deck she produced.  She worked in acrylic
paint on canvas boards to produce 64 pictures full of appropriate symbolism,
and that became the imagery for the deck -- but in that case, the publisher
did not insist on taking all the original artwork and keeping it, unlike what
happened with the tarot deck.  So she still has it, it's stored in the house,
and I'm working through photographing each painting as well as I can and then
eventually, it will become part of bgw.works as a set of images people can
browse through and enjoy [or be horrified by, whatever], and thus add to
Mom's online memorial.  I set up a sort of neutral background opposite a set
of large north-facing windows in the rear of the house, which bring in a nice
even wash of sky daylight, and something to lean each canvas up against, and
then shoot them from just inside the windows.  It's enough uniform straight-on
light that it reduces visibility of the canvas texture, which is exactly what
I want for this.

The interesting thing that happened when Mom started that project was that I
looked at the six-bar symbolism, and immediately said "so, they're counting in
binary!" ... and then had to spend the next three days explaining what that
meant in terms of how computers represent incrementing numbers.  When you
hit 1 in a column, you run out of digits and have to carry.  She eventually
more or less got it, and even has a small dedication to me in the foreword
of the book for "teaching her the system".  Counting in bases anything other
than 10 is a really foreign concept to many people.

The staff at the nursing facility, again, has been top-notch, and they're also
getting good guidance from the hospice organization that's still involved.
They are willing to experiment a little for the sake of Mom's comfort; they
took her off the fentanyl patch and are moving instead to twice-daily doses
of methadone for baseline pain relief.  The dilaudid is still available
to handle peaks.  The interesting thing about methadone is that's a very
long-duration opioid, and given twice daily still takes about 3 days to ramp
up to its full effectiveness, so those doses have a kind of cumulative and
overlapping effect across some long timeframe.

Mom's had an ongoing trickle of her friends and supportive folks come visit,
which she seems to enjoy.  Some have privately told me that they're kind of
shocked by her evident decline, from just a couple of weeks ago.  That can
vary per where she is on the "lucidity curve" at any given time, of course,
but the overall effect has been positive.  One especially nice "surprise" that
I semi-arranged was a visit was from her original concierge doctor, who wanted
to stop in and take a good look at her ... walked in with a stethescope and
everything.  But we mostly talked about Mom's accomplishments -- authorship,
artistry, academia, and of course raising her now-very-attentive son.  That
doc and I have been acquainted for a few years now, and she understands Mom
[and to some extent, me] at a deep level and is pretty responsive to her needs
[for a stiff yearly retainer, of course, that's what the "concierge" part
means].  She also had done the initial cancer diagnosis from the imaging done
at the hospital and written the report about the observations.  I still have
not managed to obtain the original imagery myself, and I probably wouldn't
really know what I was looking at, but it would be nice to have for archival
purposes.  The concierge doc said she'd poke the hospital folks and ask
about it.

So today, we had another adventure afield that I was a bit less happy about
than the moon-gazing.  The staff got her into the wheelchair to roll out to
the facility lobby to hear the guy doing some singing-and-piano entertainment,
but after that was done and she was already in the chair, she was like "let's
go outside".  I got her into her favorite jacket, as it was warm but still a
bit breezy outside, and we rolled out the front of the building and along the
sidewalk by the retention pond nearby.  When we got to an intersection of
sidewalk where we could go farther afield or back toward the nursing center,
I chose to go straight on the latter intent, but Mom started going "no, no,
go left here, I want to go to the *house*!" and getting really agitated about
it.  I had not planned on trying that today and she was about to get lunch
back at the nursing center, but she *insisted* that she wanted to visit the
house *right now*.  So we trundled out that way and I brought her there,
warning that it might be a bit more of a mess than she liked because I was
in the process of pulling things out of their places and organizing.  We
also needed to get her a couple of things anyway, so I supposed it was okay.
I called the nursing center to warn them that we were making this trip, and
I had no idea when we'd be back.  The day nurse said they'd put her ice cream
back in the freezer for whenever we returned and said it was fine.

However, when we got there, Mom insisted on poking into various minutiae and
getting completely distracted on small details she couldn't really parse
anymore.  She clearly had no more ability to make decisions about any of the
stuff there, but was trying to anyway.  We found her a couple more shirts out
of the closet and grabbed her sun-hat and sunglasses for better protection
when outside, but then she wanted to go through some desk drawers and try to
sort out stuff to keep or throw away.  This took forever, because she simply
didn't really know what she was looking at.  I tolerated this as long as I was
able but kept pointing out that we really needed to get back to the nursing
center and handle lunchtime, we had gotten everything we needed here, I could
handle the rest of the sorting, etc.  She just wanted to stay there, likely
indefinitely if she'd had that choice, but by then she had already utilized
her diaper and there was no nursing staff present to handle her *real* needs.
I finally got that hard reality through to her, and we collected the items
to bring over and finally headed back to her room.

That trip was a pain in the ass, but I got some insight a mere hour or two
later as to why this was so important to her.  After we finally returned, I
read my email and found a reply from the "member life" folks saying that I was
welcome to join a small "life changes" support group Mom had been participating
in for a while.  Realizing that it was about to start, I steamed up to the
right room and poked my head in, and was encouraged to have a seat and join in.
It was a pretty good in-depth discussion of death and grief, with me supplying
the "we are very practical about this" angle.  The group is facilitated by a
psychologist who used to be a case worker at the hospital, and she offered this
perspective: it's all about losing control.  As old people lose ability to deal
with matters of life, they try to desperately grasp at what they can still
understand and affect, but even that ability keeps slipping away and they
often get fairly resentful and angry about it.  I know there was some of that
as Mom lost her ability to drive, to ride her bike, or to handle the computer
as well.  Her own participation in this discussion group had made her several
new friends over the course of the past year, though, most of which I hadn't
met before but had now started to on this trip.  And trying to retain that
control over stuff in the house was part of that, and the shrink pointed out
that because we know Mom doesn't have a lot of time left, if spending time
poking through old birthday cards and not really being able to decide anything
about them brings her some pleasure and more importantly *engagement*, we
should absolutely let her do that.  So it may indeed be my job to bring her to
where she can do that, and simply stand by while she bumbles her way through
what she thinks is some kind of important process.  Nominally I would like to
discourage further trips to the house as it creates a mild bit of conflict, but
from this I take that maybe *I* should lighten up, cater to this interest,
and just let her do her thing as she will.  No real harm can come from it,
although when I start the process of seriously giving away or pitching some
of the contents, that may bring on more negative feelings if she sees the
effects afterward.

For example, and this might be one of those thoughts that could make people
choke up: when I rolled the wheelchair into her desk footwell so she could
go through some drawers, she sat there and said "huh, I can't believe that
this is the last time I'm going to actually sit at my desk".  Well, that may
not be true, if we do another house visit.  But in that moment, perhaps the
real finality of her situation was dawning on her with greater intensity, and
it was here in her own house that she was feeling a greater sense of loss from
what had always been a part of her life.  And at the time I wasn't really
understanding that, simply trying to get her to stop picking at trifles and
we should head back to the nursing center.  The problem that now, her process
of still trying to be in control was so slow and ineffectual, it was a burden
on me to wait for that to play out.  But really, it wasn't like I had anything
else pressing to accomplish anyways at the time.  In hindsight, maybe I should
have wheeled her into the living-room area where she could watch me process
another batch of I Ching canvases and maybe appreciate that I was trying to
work toward getting more of her accomplishments into the public eye.

I brought her laptop back to the facility, and reconfigured it to be on their
guest network.  She did not realize up front that that was possible, and kept
saying she wanted to use her own computer *while in the house*.  Now, I
already knew her ability to really navigate the computer was totally gone,
and saw no point in having her try, but just as another thing to keep her
engaged I decided to set it up so she could use it at the nursing facility
in the same way as previously at home.  So now she could in theory get to her
daily Wordle, email, and google for stuff -- except that she'd basically
forgotten everything about how to use the thing.  Still, she wanted to send her
own email to the same cousin mentioned a section or two back.  I helped her
start Thunderbird and get the target email address into the to: box, a nominal
subject: line, and then into the text box for the message body.  Then, as
before, she sat there and struggled for another hour to get *any* text typed
into the message area -- simply couldn't find the right keys, couldn't
translate any thoughts she might have been having into keystrokes, couldn't
even tell me in speech what she wanted to say to that recipient.  Total fail.

Then dinner arrived, and I had to persuade her that she could just leave the
message incomplete and go back to it any time, by simply moving the laptop
from her bed table to a side chair and then back again.  It's plugged in so
it wouldn't lose context, so if it might take her three days during lucidity
highs to bang in what she wants to eventually send, so be it.  She's clearly
dismayed that her memory of how to do this is so compromised, but there's not
much *I* or anyone else can do about that.  It's clearly a form of selective
dementia -- another instance of the narrowing of one's life cognizance that
happens when we get older, and it's an inevitable process as we decline.  For
Mom, any computer-related ability was always the most difficult for her in
general, and would thus be the first to really go in a precipitous way.  I
saw this coming within the last couple of years, as some of the questions she
was asking about how to do things were about operations I knew that *she* had
known how to do in the past, so evidently that part of memory was failing.

As everyone around the situation keep saying, we'll just handle this one
day at a time.