UPDATE: As he did yesterday morning, J looked somewhat better this evening: drank and ate more (modestly speaking), had less pain, and was semi-present. Every time I say that he conks out for another 18 hours, but maybe there is an upward trend.
At least, I now have two points from which to hypothesize such a line.
* * *
The hospice aides have cut back from 5 days a week to 3, because J is not, after all, “imminent.” (That’s what you’d call a euphemism by omission. I got a look at that word from the other end once: a friend got us into an investment we couldn’t afford, the payoff of which he kept promising was “imminent,” when it was actually a very good thing to put in a drawer and forget about — it paid off handsomely years after we’d caved and sold it at a loss. I developed an allergy to the word back then. I don’t like it coming or going.) Friends are still loyally giving time to us, and bringing food, but of course not at the intensity they did when this was a crisis. It’s chronic now, and they have to tend to their own lives.
So life’s iron walls have contracted another turn. (An image from The Pit and the Pendulum.) My outings have shrunk to shopping, though shopping has paradoxically expanded a bit because J no longer waits for me in a conscious, impatient panic. But bigger expeditions are out, because they entailed taking J someplace (to the dojo, to his gym, to the pool, to a restaurant with friends), and he can no longer go. He was some kind of a companion before, and now he is mostly not. He revolves through three parts of a cycle: he hallucinates and talks to people on the ceiling for 18 hours, then he sleeps so deeply (regardless whether lying down or sitting up) that he is unresponsive or barely responsive for 18 hours; and in transition between the hallucinatory and near-comatose states, he has brief periods when he communicates with me as well as with the people, horses, swallows, rats, or whatever on the ceiling. During these shorter periods, like this morning, he might drink two glasses of milk or three of water, and swallow some applesauce with crushed medicine in it, and greet people with a tattered bonhomie, and say funny things (I nagged and pestered him to cough until finally he said, “You cough!”). It looks as if he’s finally beginning to get better, but no, he’s not, any more than he was dying. It’s just an interlude. An imposture.
(As for his breakfast boast this morning — his retort to the offer of a fried egg was a scornful “One??” — by the time it was fried, he couldn’t manage even one bite. Joke: short-order cook to Frenchman: “Would you like two eggs?” Frenchman: “No. One egg is un oeuf.”)
Our friend the hospice volunteer will be coming back now that the chickenpox virus is gone; Felden-Chris has offered to sit with J on Thursday nights so at least I can get to the karate dojo once a week; the hospice social worker urged me to make such arrangements so that I’m not too trapped and isolated. (They could also take him into the hospice facility, where I could spend as much time with him as I wanted, including overnight, but I’m resisting that for now. Whatever little of his surroundings he is taking in, let it at least be familiar.)
This phase is less demanding of me physically and temporally — J mostly does not interact, and except in those little windows of opportunity when he’ll drink, eat, and talk a bit, there’s not much I can do for him. But it is . . . what? Like floating weightless in outer space: empty, directionless, disorienting. The hospice nurse says she has seen dementia patients go on like this for months, without any artificial support, on the small amount of nourishment they can take in.
All bets are off. Anything could happen, or, more likely, nothing could. How do you brace yourself for complete irresolution? It’s an oxymoron. The will could quickly atrophy, the way the weight-bearing muscles do in space. Then too, the house is a minefield of little reminders of our life before, just a month ago, which wasn’t half bad, and has now been sheared off, even though both of us are still right here. (I know, I’m far from the first or the only one in this waiting room without walls.)
I’m actually hoping not to have to decide whether to go back to New York City, where my last “in absentia” lease ends in February. That would be a really tough decision. I’d rather have it taken out of my hands.