Hitting the Ledges on the Way Down

I traveled to New York this morning and I'm about to head uptown to visit.  I called him last night to tell him when I'd be here.  As usual, I called him about 1 p.m. when I got to the city, and told him I'd call around 6:30 when I was about to catch the subway. 

He called me around ten to six, wondering if I'd be visiting today, and if so, when.

This is pretty much the new normal -- to the extent there's a "normal," which I understand to mean a static condition that you get used to over time.  No chance these days to get used to anything.  "Normal" in this case means "consistent with the trend."  Which, by the way, ain't good.  It's been a busy month.  At a couple of points I was going to log in and say that he'd reached a plateau.  The problem is, he didn't reach it for more than a day or two before the next thing happened.

So, not plateaus.  More like hitting the ledges on the way down.  They break your momentum (among other things they break) for about a tenth of a second.  And then you're on your way.

Highlights...  At the beginning of the month we lost the turkey sandwich.  The process was interesting.  First, as noted, the confusions (what goes into the sandwich?  When do I take it out of the refrigerator?  What's that thing I make for your lunch?)  Then, one night at the beginning of the month, the solution -- wouldn't I enjoy it more if we ordered from City Diner?  There'd be more variety... And City Diner it is, from now on. 

What was striking about this was that he was completely able to develop a strategy (suggest the diner) and frame it in terms of my welfare (variety, enjoyment).  Complex, creative, high-level reasoning -- masking the root problem, which is that he can't remember the ingredients of the sandwich, or remember how to make it, or control his anxiety about it.  This is typical of where we are right now.  It spills over into his plan of care.  The professionals who come to visit usually notice how good his cognition is.  Then I spend my evenings on e-mail, after my phone calls with him, reporting to them about how bad it is.  They're puzzled, and ask whether he's "sundowning," since I talk to him at night and they see him during the day.  Except that I talk to him during the day, too.  The problem might be sundowning -- but it's also that his mind is decaying from the inside out.  His ability to pull himself together, and present well -- and to be genuinely concerned with other people's welfare -- that may be the last thing to go.  What will go first is his ability to function.  At the moment I find myself trying to communicate about a state of emergency that nobody else can see.

Then, last week, there was the night of the missing cat.  Three nights, actually.  This sounds trivial and isn't.  He keeps two cats, and the cats keep him engaged in the world.  One of them is special -- really affectionate, really extroverted, really complex.  Impossible to replace.  It started trying to escape at the beginning of the month (why, exactly?)  It succeeded a week ago Monday.  Through his legs and down the back stairs.  He was stricken -- so upset that he called me three times, but when he called me, couldn't remember that anything had happened.  Then he remembered that the cat was dead.  Except that it wasn't -- a half-hour on the phone trying to get him to explain where the corpse was, and we figured that out.  Then, on my part, a series of phone calls -- to the animal hospital, which told me where to get the (humane) traps, then buying the traps, then sending E up to Washington Heights to get the traps... 

I had dinner with him last Wednesday.  Still no cat.  He was philosophical about the cat.  He was also philosophical about his own death, which, for the first time, he said he thought was imminent.  Running up and down the (12 flights of) back stairs looking for the cat, which he shouldn't have done, brought that home.  And he'd noticed that I was getting older.  So he wanted to make sure that there was money set aside to take care of him and to take care of me.  He couldn't remember whether he had any.  I assured him that there was and that everything was provided for.

Separately, the phone jack in the bedroom had short-circuited, and I had to move all the phones, including the base of the portable phone, into another room.  We spent the rest of the evening on how to use the portable.  Same phone, of course -- just the base had moved.  But he couldn't work out that you'd use the phone the same way.  Changing the location changed everything.  All the process went out the window, and we had to build it up from scratch.

So again, abstract reasoning good, ability to function increasingly nonexistent.

The cat turned up the next morning -- in the trap.  Can't say enough good about the humane cat traps,

Can't say enough bad about the neighbor who pulled down the "lost cat" sign we'd put in the elevator.  It was, apparently, corrupting the decor.  Which was, after all, the main priority.  Lovely.  I tell myself that this person will turn up at some point, and that I'll be ready.  But of course, that won't happen.  Probably just as well.  Rage won't make a difference.  People are what they are -- in this case, selfish and irredeemable.

In the meantime the deficits pile up.  As you can likely tell, his time sense is completely gone.  It's not just time of day or day of week now, it's the basic ability to sequence.  He can't hold a list of events in his mind and anticipate them.  Everything's always new and fresh and quite frightening.

We'll see what happens at dinner tonight.  Next week I've got a treatment conference -- the first in a while -- with H and L (who replaced J a month ago).  At the conference we'll explore the things that seem to be good, and the things that actually aren't, and where to take them. 

Or where they're taking us.