The New Normal [UPDATED]
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.
Ambiance 
wj said,
October 27, 2010 at 8:08 am
I don’t know how you brace yourself for something that might come very soon, or possibly not for months or years. I was in a somewhat similar situation with my mom for some months last spring, and I never did figure it out completely.
The best I (and my siblings, to various degrees) could manage was accepting the fact that something would probably happen eventually. With “eventually” left largely indeterminent — sort of like “imminant,” now that I think about it. Then, having accepted that, we fell back on, as my sister put it, “one day at a time”: we cultivated patience, having no idea how long we would need to continue — nor even whether some kind of recovery might be possible. It was draining (I simply can’t imagine how you have coped this long!), but it got us thru it with our sanity mostly intact.
Those of us at a distance can, unfortunately, only keep you in our prayers. Which we will. God bless.
Randy said,
October 27, 2010 at 8:22 am
WJ took the words right out of my mouth, but said it better. You and J. are in all our thoughts and prayers.
amba12 said,
October 27, 2010 at 8:48 am
I just learned that the hospice aides will no longer get him up and into his wheelchair. Two of them have hurt their backs doing so. (He’s lighter, now, but also more inert.) Jeez. I got him up by myself yesterday; I’ve never hurt myself doing it. Granted, he sleeps through it and from one point of view, I guess there’s no point now. But it makes me feel, irrationally, like they’re mad at him for not dying, or something.
amba12 said,
October 27, 2010 at 8:49 am
I’ve never hurt myself doing it because of my Feldenkrais Method training.
amba12 said,
October 27, 2010 at 9:29 am
Now they’re going to go, “Oh! She’s having feelings! Quick, call the social worker!” She’s like the janitor for tears.
Maxwell James said,
October 27, 2010 at 10:20 am
I bet the Feldenkrais Method probably serves you pretty well in outer space, too.
amba12 said,
October 27, 2010 at 10:54 am
By the way, wj, that’s a really good description of the situation. I had just written almost the identical thing to a friend:
Oddly enough I did not feel this way before. We had settled into a manageable routine that seemed if it could go on forever, given J’s endurance, and I could live with that. Of course, that was a stupid assumption, seeing as nothing goes on forever.
Peter Hoh said,
October 27, 2010 at 10:54 am
They aren’t really set up for your situation, and that’s going to leave you frustrated.
amba12 said,
October 27, 2010 at 10:56 am
Right; as Maxwell pointed out, J has never been a normal fit for hospice. (Not that everyone isn’t different, but he’s sort of outside the usual parameters.) For one thing, dying is just not something he does. :-P I’m not a normal fit either; it’s unusual for someone as helpless as he is still to be at home.
amba12 said,
October 27, 2010 at 10:59 am
Actually, I think they think I’m keeping him alive. And without any really extraordinary measures.
What’s eventually going to happen is he’s going to get aspiration pneumonia, because some of what he ingests is going down the wrong pipe. And he won’t be able to swallow antibiotics, and we won’t do IV. Then we’ll let him go.
A said,
October 27, 2010 at 1:23 pm
It’s so difficult—close to impossible, really—to find the fluidity of your approach in people whose job it is to help you and and J. I’ve smacked up against this wall for years, decades,
and it is bruising, as if there weren’t enough to deal with already. That fluidity is built into
Feldenkrais moves, too. If the hospice folks won’t help get him up, could they provide a motorized bed?
The janitor for tears. Oh, what a perfect description.
pathmv said,
October 27, 2010 at 1:24 pm
Yeah, he’s been resisting that for a very long time, much harder than the average person has to.
Uncertainty is, to my mind, always the hardest thing to bear. I remember how, after I first got word that a tree had fallen on my house while I was out of town, I had a lot of anxiety, all day long. That evening, I finally got some pictures of what had happened. While the damage was extensive, having the pictures actually brought me relief. Things were no longer uncertain, and that made it much easier to cope with, emotionally.
Prayers are always with you guys, amba.
Ron said,
October 27, 2010 at 2:36 pm
“One egg is an oeuf.” Sweet smokin’ Jesus in a birchbark canoe, you really do have RAA-pundiferious-Twitterica-unum disease, don’t you? Dr. Fluffy’s prescription? Take two chickelits and call me in the morning.
amba12 said,
October 27, 2010 at 3:09 pm
I didn’t make that up. I told one of J’s oldest friends on the phone about the egg yesterday, and he “laid” it on me.