Stage 7

Hadn't heard anything from the hospice nurse yesterday or this morning, so I went up to the nursing home around midday to see how things were.  Found that he's become exactly what I was afraid he'd become - one of those immobile cases lined up in the hallway in their geri-chairs.  There are always four or five of them.  Today he was the fourth - all the way at the end of the line, where the hall meets the big common dining area, about fifty feet down from the nursing station.

He was lying there in a hospital gown, draped with a sheet, hard asleep, breathing with a rasp, and with his jaw dropped down hard again.  At first I let him stay that way - no point in disturbing him, so I just stood by the geri-chair.  Behind me was one of the dining-area tables, with four patient seated at it.  One of them - a woman who's still aware of her surroundings - caught my eye and shot me a look of pure pity.  It's impossible to describe it except to say that it was fierce.  There are moments of understanding and connection that happen only on this territory, and this was one of them.

I'd showed up earlier than usual - before lunch - and when lunchtime came, one of the attendants woke him up and fed him, in that quiet, kind way that I'd first noticed when I was watching the staff during my summer evaluation visits.  It was good to see it pay off.  There were other staff members who greeted him as they went by - one kept calling him "honey doll," which he must have caller her at some point.  There was warmth there - they like their people.

My father ate surprisingly well - had trouble swallowing at the end and fell into a rasping cough like the one hospice described to me a couple of days ago.  It means pneumonia will happen again soon.

He didn't register me at first - he tends to stay focused now on whatever is directly in his field of view.  Then he did, then he didn't, then he did again, as though he'd never seen me before.  The first time he said something that sounded roughly like "Hi, Alan."  The second time he greeted me in my official capacity, as Mr. Visitor, except that he couldn't quite form the word "visitor."  There was a third moment of recognition later on when a nurse ran past and he said, "Oh, there's mother."

After he ate, I sat with him for a half-hour or so.  During that time he produced a couple of comprehensible word strings - "I've been trying to figure out" and "you've got it, boy" and "a lot of big people here."  He also produced facial expressions that were appropriate to conversation in general - quizzical, amused, intent.  But they didn't seem connected to anything that was actually being said or heard.  Mostly he produced sounds - not even word-like sounds anymore, just sound formations, sometimes vowel combinations and sometimes consonant groups.  There were brief moments when it seemed like he'd made a connection with something or other I'd said, though his reactions could just as easily have been the result of random signals in what's left of his brain.  And after a few seconds he'd lapse out of contact and go back to obsessively working the bedsheet, folding it into a series of shapes and patterns. 

His hands were less clawed than they had been on Tuesday, but there were some signs of contracture in the fingers and knuckles, and less severely in the hands themselves.

In the background there were a few upheavals caused by the other patients - most of whom suddenly seem as though they're in much better shape than my father is.  It's all relative, of course.  There was the usual array of random screams.  Southern Belle came by and was having trouble navigating, and I wound up taking her by the hand and letting her guide me as she found her way toward a chair.  As she got to it she asked me where the other people were, and I said I wasn't sure.  A man at the next table looked up from his plate and glared at me and said, "Why aren't you sure?"  "Well, there's a lot to figure out," I said, and found my way back to my father.

A couple of minutes later, commotion - Southern Belle had fallen just behind me.  Confusion among the attendants, who wanted to help her but aren't allowed to - falling is a protocol-intensive event (I guessed right about that) and only a nurse can intervene.  One did, and they got her up and seated and checked out.  No harm done.  I suppose some relative of hers will be getting the usual phone notification, the same as they gave me.  Still more reassurance that falls are all in a day's work and generally aren't anything for me to worry about. 

So I went back to sitting.  Unlike the past couple of visits, where he's been extremely agitated from the beginning, this time I felt like I was doing him some good by sitting there with him - just being present, and sharing a small amount of time.  So I stayed a little longer than I usually do.  But toward the end the agitation was beginning to set in - he started to flail around in the geri-chair and move the sheet aside as though he wanted to get up.  Once again, I think it's a reaction to the sensory overload caused by the visit - it's more than he can process.  At first I told him to relax - that there was no more work to do, that the rest of us would do the work now.  That's something I also told my mother toward the end.  But of course he couldn't really take that in, so finally I told him to try to rest, and that I'd be back soon.  I made sure the nurses were aware I was heading out, and then I left.

And there we are.

Taking everything into account - the speech failure, the immobility, the random reactions, the hand contractures - I'd have to say that, to this informed amateur at least, it looks like he's in the early phases of stage 7.  If so, it started the same way stage 6 did - with a sudden event (surgery then, pneumonia now) that throws him... and then he doesn't recover completely from it.

For as long as I've known he has Alzheimer's - more than three years now (there were five years before that when I thought he had some other, more benign dementia) - I've read that linked description of stage 7 and dreaded it.  I wanted him to avoid it at all costs - really - at all costs.  But he's in it now, and there's no point in dreading it, or having any particular emotion about it.  He didn't avoid it, and it's not going to change, so now we'll just deal with it.

But given that it's going to get worse - we're just at the threshold now - I'll continue to hope that it doesn't last long.  A few weeks ago I had the abstract notion that maybe it'd be best if he didn't survive the year.  Now things have changed again and the abstract notion has turned into a concrete desire - I'd really like to see him get out as soon as possible.  No doubts anymore - better pneumonia than stage 7f. 

I had the sense looking at him today that it might be just a matter of a few more weeks.  But as usual, we'll have to wait and see.

Comments

[julie]

Man,.......that's hard to read.

[Alan G. Ampolsk]

This was not one of the great days.