Headlines first: he's still with us. I had a brief conversation Friday night with Dr. M, who seemed to feel that his clinical signs looked a little better. Then no news 'til yesterday evening, when the hospice nurse called me in that cheerful way they fall into, to tell me that my father was doing wonderfully and had called her "kid" and asked, "Hey, kid, is there anything I can do for you?"
In other words, the antibiotics did the job. He seemed to be clear of pneumonia as of this morning. Once again I'm left wondering about Dr. H and his "dead in 48 hours" routine, but that's neither here nor there now.
This morning I went up to the nursing home for the first time in a week (I'd stayed away because of my own cold/flu thing). I met briefly with the hospice rabbi, who was nice and a little sad. Hospice clergy is often an entry-level assignment and the rabbi is a little older than many, which means she's probably a career-changer handling a tough gig. She did OK with my Jewish-Buddhist hybridism, and maybe a little less well with my caution that it's fine to have her visit my father, as long as she doesn't identify herself as a rabbi - the rabbinate makes him violent. She heard that and told me her schedule was very busy but maybe a volunteer visitor would be a good thing.
The main event of the day was the treatment conference - my second since my father was admitted, and the first one involving the new palliative care/hospice team. I suppose that makes it an end-of-life planning conference - one of those death panels you've heard so much about.
My first question to the group was this: did we do the right thing? If he's pulled through the pneumonia, does that mean he's still hospice-appropriate? The answer, without hesitation, was yes. He fought off the pneumonia but he hasn't made it back to baseline, and probably won't. He's no longer able to walk, even with the walker - he now moves between his bed and a geri-chair. He's less coherent (hard to believe, but true) and more easily agitated. It's possible that he'll recover more in the next couple of days, but the overall trajectory is still sharply downward. The odds of a pneumonia recurrence are high - his swallowing is worse, and they've just had to order his liquids thickened still more to keep him from choking on them. But even absent the pneumonia, he'd qualify for hospice purely on the basis of the Alzheimer's. And the hospice representatives said they prefer to be on board sooner - they say they can do more than if they're called in right at the end.
We went down the list of what will change in his treatment plan. Short answer: not that much. They've started low-dose morphine, and reduced but not eliminated his Alzheimer's meds - the Depakote, Neurontin, Seroquel and to an extent lithium are still needed to control his agitation. Over time he might transition fully to sedation, or he might not. They'll drop certain protocols - for example, no need to weigh him now since weight maintenance isn't a goal. A, the head of palliate care, raised the question of whether we want to discontinue behavioral assessment. I voted to keep it in place for now. As long as he has the capacity to be agitated, we'll have to manage that. Also, I want to keep P on the scene - she "gets" him in a way the others don't (for example, isn't taken in by his surface cheer). It's a premium service, but until such time as he's completely unconscious, we'll continue it.
I had a chance to review and revise the directives. They were already decently clear. Antibiotic treatment had been marked "other - consult with son/power of attorney." Given that, you'd think they would have consulted before starting him on the antibiotic treatments last week. But they didn't. Again, no matter. I altered the order to "no antibiotics except for comfort," and also changed the order for medical interventions from "consult first" to "none." That should remove any last trace of ambiguity.
We wrapped up in about a half an hour. My last question to them was whether my reactions, preferences and directions were in the normal range for families in hospice, or at this stage of Alzheimer's. Answer: yes. As usual, everything feels like it's happening for the first time but there's company on the road.
After we broke, I went downstairs to look in on my father, together with the hospice nurse and the hospice social worker. We found him lying diagonally across his bed - he'd been trying and failing to lift himself out of it. He looked pale and stricken - much worse than last week - and his hands and feet were clawed in a way I hadn't seen before, though some of that could have been the result of the exertion.
He recognized me, sort of, but only after he was prompted. He was compulsively verbal, same as before, and most of the speech was completely indecipherable. A few phrases came through. He was concerned with finding something for me in the apartment, and also with getting word to his mother. I told him I'd take care of that, and also that he didn't need to find me anything - there was no need for him to work anymore. He relaxed a little when he heard that, and a little more when the hospice nurse took his hand and stroked his shoulder. But it didn't last. Within a few minutes, the task of holding a conversation with three people got to be too much for him, and the agitation set in again. One of the staff came in to help him move up in his bed, and he started to scream and curse (concerning this: A thinks he might have osteoarthritic pain, but my take is that the pain is psychological - moving him amounts to loss of control and that equals distress). The screaming and cursing alarmed the hospice people, who like all the newcomers except for P, had been charmed by how courtly my father can be, even now. But once they saw the outburst they went running for more staff support, and stopped wondering about why he needed his current array of meds.
After the staff got him settled, he quieted down again, and was able to resume a sort of conversation. He began obsessively folding his comforter, in a way that seemed to represent something - he kept commenting on it (roughly, "do you think we should do it like this?") but I couldn't figure out what, if anything, it meant. After a few more minutes the agitation set in again - once again, this seemed to be the result of too much stimulation and sensory overload. We all left. The hospice nurse said she'd visit again a little later, and I explained to them that I'm mostly trying to limit my visits to 10 minutes because that's as much as he can take.
And there we are. Crisis has passed, it's still not clear the extent of the damage, and as usual, we're more or less stable and waiting for the next lurch. That could come days or weeks or months from now, or he could just keep sliding steadily out from under us. At the end of the day - after seeing him clawed and distressed and struggling to deal with his visitors, I'm in no doubt about the decision to move him to hospice, and hopeful that the next time, the protocols will be clear and we'll get him where he needs to go. In the meantime it's out of my hands - exactly where it's been all along.