Hadn't originally meant to visit the nursing home today, but I was in the neighborhood and decided to swing by. A good thing. I got to meet with several of the principals - H (the charge nurse), A (palliative care), the hospice nurse, a hospice volunteer who was helping with lunch, others on the unit...
The picture is bleak, but no bleaker than expected. He continues to decline sharply. Lung congestion persists - fluid is pooling in the bottom of the lungs. He's having trouble eating - aspirates food, and can only get down about 60 percent of what's served him ("though that's a pretty good percentage," the hospice nurse said). They were supposed to have moved him into a geri-chair this afternoon but he seemed peaceful in bed, and we decided to leave him there - no reason to agitate him just for the sake of keeping to a routine. Concerning that, "your approach is 180 degrees away from most people's," the hospice nurse told me - said most families want lots of intervention, heavier meds, are insistent to know why the patient isn't getting physical therapy and such... But we're clearly beyond that. The conversation helped me understand why my discussions with hospice staff seem awkward sometimes - they're expecting me to resist and I don't, and they're not used to having someone agree to start backing off the interventions.
When I got there he was partly alert and producing some word strings. Twice, though, he drifted off in mid-sentence. I took that to be the morphine, but A told me it isn't - the sedative effect of morphine wears off after a couple of days. So what we're seeing is the effect of the Alzheimer's itself. On the other hand, the jerking arm movements - a new development today - might be morphine-related. She's going to try him on low-dose Ativan to see if helps. Most of the other Alzheimer's meds have been stopped, and so has the lithium. They're using Depakote in addition to the morphine, but that's about it.
He woke up more when lunch came - the usual pattern. The hospice volunteer - a Navy corpsman from Liberia by way of Ghana - was extremely good with him. My father came out with a few more sentence fragments. Some of them seemed appropriate but weren't - when A asked him if he was experiencing any pain, he said, "Oh, yes, I am," in a courtly, courteous way. He clearly wasn't in any pain. He just heard something that sounded like it demanded a response, so he produced one from a very small reserve of phrases. Then there was an arc that sounded more coherent - roughly, he said something to the effect that he's been there for weeks and needs to go somewhere. Then he fell into his compulsive behaviors - folding and re-folding the bedcovers again, while talking about something that needed to be organized. The imagery got elaborated so that arranging the bedcovers was related to something on the opposite wall - "yellow" (the color of the wall), which was a place he had to get to. Then he focused on my visitor's badge and wanted to touch it. After that he began fondling the lapel and the the inside hem of my coat. Then he touched my chest as though he was trying to figure out what it was. Then he took my hand and began to examine it the way you'd examine a foreign object. Then there was a moment when he looked at me and said, in a distorted way, "Wait... minute... you're... Alan... Ampolsk." But it wasn't clear what if anything that meant to him - there wasn't any sense of recognition, or that he was connecting the name to a person or to himself. Finally the combined activity got to be too much for him, and the fascination with the bedcovers and his need to get to "yellow" led him to start stirring and flailing and trying to get out of bed. At that point, as I usually do, I let the nurses know that he was getting agitated, told him I needed to step out but that I'd be back shortly, then left.
Afterward I was able to take a moment and ask A my unfair question - what's the prognosis, and what's the timeline? Her answers: bad, and short. He's crashed spectacularly since the pneumonia, and won't recover any of his pre-pneumonia capacities. He's lost mobility. He isn't clearing the fluid from his lungs. Speech is essentially gone. I mentioned that, to my amateur's eye, he seemed to be in stage 7, and she said, "I'd say mid-stage 7 - about 7d." Keeping to his standard pattern, he was able to speak considerably longer into the stage than normal, and that masked the severity. As to how long, "weeks, or months," she said. Which is fine, if so.
I was thinking during the visit that today is seven years since my mother died. My father got the call from hospice and phoned me that afternoon to tell me. There's the usual temptation to try to make something out of the anniversary date (then she was in hospice, and now he's in hospice) but I won't. She died and the stress of caring for her helped push him a little faster into the Alzheimer's, and now he's where he is. It's all natural and absolutely commonplace - just the way things go.
Strangely, there are still compensations on the way. Today there was the corpsman from Liberia. There was also the moment in the hallway, outside his room, when one of the patients came back from a doctor's appointment and another patient - an older African-American woman who's in considerably worse shape - went over to her and stroked her and kissed her and covered her with a bedsheet. Kindness is a remarkable thing and you can find it everywhere, or almost everywhere. I never saw it in the corporate circles I used to hang out in, but I've come across plenty of it since, mostly from people who don't seem to have as much going for them as executives and leaders do.
So it isn't all bad by any means. Still, it's surprising and positive to realize that maybe, after all this time, we're finally getting him where he needs to go.
I'm sure there'll be more bumps, though. None of this has ever run smoothly, so there's no reason why the end should. I'll stand by and wait to see what the next crisis will be about.
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