It would be absurd to say J is “hovering between life and death.” He’s still very much on the side of life.
But it’s as if he’s pondering whether it’s worth the effort to stay here. If he doesn’t have the strength or the desire to make the effort, he will slide.
I’m waiting to see what he decides. Waiting to follow his lead. Like dancing.
UPDATE: More and more I think he’s not coming out of this.
The hospice nurse on call Thursday night gave me “the talk” about how to stop swallowing means to start shutting down. “You may begin to see other changes . . .”
J is just somnolent. He wakes up and communicates lucidly for about one minute, maybe takes a few spoonfuls or sips of something, then the effort seems to exhaust him and he either loses consciousness with his eyes wide open — you can wave your hand in front of them, call his name and get no reaction — or his eyes roll up in his head and close again.
It’s brutally hard, maybe impossible, for me to take care of him in this state. I used to say when I had to turn or move him, “I don’t have anyone to help me but you,” and in fact only his cooperation, however minimal at times, made it possible for me to care for him (mostly) alone. I’d have him reach across himself to hold on to the bed railing while I tugged on a draw sheet under him to turn him on his side. Then when it came time to roll him to the other side, I’d have him bend his knees and just think about rolling onto his back; that alone would incline his body to go that way (a Feldenkrais insight). Then I’d have him raise his arms straight up toward the ceiling so that their weight, going in the same direction as his knees, would help me roll him over as a unit. I could pull him up towards the head of the bed, when he’d slid down too far, by tilting the bed head downward and tugging on the sheet while he lifted himself slightly using the “trapeze,” the triangle that hangs on a chain from a bar over the bed. He can’t do any of those things now; he’s completely inert, and I can barely budge him. Even if he understands and is willing for a moment, he passes out again before he can complete the thought.
I hate to put him back in the hospice inpatient facility, because it was probably his bad experience there while I was in Chicago that got him down enough to trigger the shingles (although it had to be something, sometime). But this may be impossible for me to handle without much more help. Maybe they’ll provide more home help. Or maybe the facility is better at taking care of a really sick person than one who’s conscious and just “parked.” Maybe he won’t know or care where he is. This apartment has never been “home” to him anyway. Those moments when he wakes up and sees me and the cats could be partially recreated in the facility. Family members can sleep there, and pets can visit. Buzzy, at least, would eat it up.
UPDATE 2: Well, I’m adapting, figuring out how to do some of these new things, or old things in new ways. Also, two friends met through karate — young parents in their 30s — read about our situation on Facebook and came over to see how they could help out, and are coming back tomorrow. That helped immeasurably. I had help laying J down and sliding him up the bed, and even better, I had the kind of company where you start pulling out books and Googling things and showing them to each other.