24 December 2024
We've been to see Joyce every day (taking Saturdays off to rest our brain bleeds) but we haven't been updating you here every day. Which is not to say things haven't been happening, but should suggest how exhausting December has been for this particular invalid.
She's been working out more on the SciFi to strengthen her legs. So I now ask her to walk from the bed to the wheelchair a few steps away instead of merely turning and sitting once she's up. And on the return trip, she walks from the hallway, where I put her lunch table, to the bed with no problem.
The past two days she has also started learning how to get from the wheelchair to a commode. That's a new trick. She can handle it physically but the mechanics of using a commode elude her. Sheik the CNA has tried to alert Cassie the Occupational Therapist when nature calls but she can't get there in time to conduct a live lesson.
Physically she's strong. She can do more than she does. She always refuses any suggestion to move. But I persist and the therapists realize they have to try more than a few times to get her to do something because she always refuses at first.
The problem, it seems clear, is with her cognition. Her fear, her confusion. It prevents her from eating, getting out of bed, walking unaided, using the bathroom.
But on that front the Donepezil for Alzheimer's, which she only started Tuesday, Dec. 17 because it had to ship from Hayward, Calif., seems to have made a difference for her already. She's more present and less confused and more focused on the task at hand.
I could, of course, be fantasizing since so much relies on the Donepezil but others have remarked on the difference, including Christina and her therapists.
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WHICH BRINGS US to today.
As she got back into bed, I got this voicemail from Gideon, a Kaiser RN case manager:
This is in regards to Joyce Abbott. I just wanted to talk to you about an upcoming release date we have for her for December 28, this Saturday. Just wanted to go over a few details and answer any questions you may have if you can call me back. I would appreciate it thank you so much bye-bye.
If you think that's good news, you haven't been following the bouncing ball. I myself thought I should be pleased (I had just asked about this after the Tuesday evaluations for discharge, in fact). But I'm acutely aware of Joyce's limitations in caring for herself right now and my own in caring for her.
I have another CTscan of my brain on Dec. 27. It's not likely but depending on what it shows I may be a candidate for brain surgery. Which would, I suspect, make me the patient for a while. To say nothing of my persistent double vision, which still prevents me from driving.
I walked through all this a minute ago on the phone with Loren, the Kaiser social worker at Golden Heights. I had mentioned to Gideon that while I still hoped to see Joyce respond to rehab enough to care for herself again, I realized that she may need 24-hour care (sooner or later) and, after exploring the options for my mother last year, also realized there is a big hole between Medi-Cal and private care in a small residential room-and-board home.
Joyce still does have 47 days of Medicare coverage available but they don't recommend using it all up at once. Still, a couple of weeks could write a different ending to this story.
Loren wants to meet the day of Christmas to chat about all this.
But in the back of my mind I keep remembering a conversation I had with the founder of ANX, the hospice, a fellow named Thomas Rocca (who had done wound care at Seton when my father was being treated there). He warned me the medical system is simply not designed for the care of patients, something I'd been aware of from my father's experience -- and have heard nothing but echoes of since.