Had meant to post a few updates over the weekend but got floored by a massive headcold - worst I've had in years - that turned into a low-order bronchial infection. I think I picked it up from my father during the last visit - he's becoming a germ incubator, the way small children are supposed to be. And then it was set off in the usual way, as a result of my yelling at E. Some patterns are hard to break.
Nevertheless... stuff is happening, and some of it is even good. First good item - Dr. B called my father Friday morning, the day after the gerontology evaluation, and asked him to come back in so they could check him for a possible infection (see "germ incubator," above). There was something in the blood work that they didn't like. I'm extremely pleased and continue to be impressed - I don't think we've ever had this degree of medical attention, and it's a nice change. As it happened he didn't have an infection (so maybe I have to blame somebody else for the headcold), so they'll continue with the current program - a nursing visit to check out the ear blockage, a dental cleaning, a follow-up with Dr. B in a couple of months...
Additional good news - M tells me that we may have the Medicaid situation resolved as soon as tomorrow. CASA arranged another home assessment this morning. I had to get on the phone and answer a couple of financial questions. Apart from that I'm trying to stay clear of details, and I keep track of progress indirectly. As in, M asks me yesterday why we withdrew the previous application for Medicaid and I say, "What previous application for Medicaid?" She goes off to find out what that's about (is it a stray bit of data about some other family member? My aunt, who died of Alzheimer's 13 years ago? I have no idea... ) At this stage I'm going on the basis that if I don't know what's behind the questions, thinking about the process won't hurt nearly so much...
Other developments: less than good, but par. The dialogue with E on Friday follows the usual pattern. There was some background confusion. Dr. B issued an antibiotic prescription as a precaution - just in case my father developed signs of infection over the weekend. But E didn't know it was a precaution when she told me she was too busy to fill it and she'd pick it up tomorrow. Dr. B doesn't give patient care instructions to aides because as a group they're not considered reliable (can't argue with that). And I didn't know it was a precaution when I told E that she'd better damn well get it filled right away (since Dr. B didn't call me 'til a few minutes later). The discussion continued in its usual way:
Me: "You need to get it filled right away and bring it back and give him the first dose. And then I need you to make sure D and your sister know what the medication schedule is."
E: "You gotta tell them that. I'm not gonna tell them that. They don't listen to me.:
Me: "Look, you have the instruction there and all you have to do is make sure they see them."
E: "You know, I'm the only one who's dealing with the cat litter. The others aren't doing nothing with the cat litter. I"m the only one."
Me: "Why are we talking about cat litter? We're talking about medication. You need to get him the medication and since you're there and I'm not, I'm asking you to make sure they have the instructions since you have them and I don't."
E: "You gotta be the boss. You gotta tell them what to do."
Me: (losing it) "OK, so follow your own argument. I'm the boss. And I'm telling you to do something. And when I tell you to do something, do it. Don't tell me why you can't do it. I'm the boss and I'm telling you, fill the prescription now and give them the instructions. That's the boss talking. Got it?"
I hung up. And then had to call back a few minutes later to tell her that there was no need to fill the prescription after all. After which my sinuses walked off the job, followed closely by my bronchia...
On reflection I'm not sure anybody comes off all that well in this particular story.
Somewhere in the cold-medicated haze of the weekend I sent a sharp e-mail to the law firm. They had confirmed that the Medicaid ceiling is now $13,000, not the $4,000 I'd been struggling with. "And when, exactly, were you going to let me know that." In their reply they pointed out that it had been in their monthly newsletter. My guess is that must have been the April issue - the only one I didn't keep. I'll send them another message, once I decide how sheepish to be. Partly sheepish, I think. A newsletter is all well and good. But after that I sent them messages explaining exactly how much trouble I was having working with the $4,000 ceiling, and nobody bothered to point out...
No, don't go there. Or more accurately, don't go there again...
Finally, there's my father. It's easy to lose sight of him in the flurry of bureaucracy and self-pity, but at the end of the day, there he is. There he is and he's doing steadily worse. He's finding all the new players and all the new appointments hard to keep track of and hard to work with. He likes Dr. B and her team but would like more breaks in the schedule, and doesn't know what to make of the visitors who keep showing up and rolling through the same home assessment, over and over.
He gets increasingly agitated and distressed. On Saturday I call him and tell him I'll see him Wednesday and he says that's great, "if I live that long." On Sunday he calls me - actually D calls me, because my father is suddenly not just puzzled but upset that he can't get through to me by tracing my phone number with his finger - he calls me and he's worried because he hasn't heard from me in 12 days, "since I got out of the hospital." That might mean, since his Thursday visit, or it might mean, since the surgery in May. In either case, he can't remember any of the conversations we've had since.
"Even since I got back from the hospital I feel like I can't keep track of anything and I'm going crazy," he says.
There's still too much awareness - just enough to make all this really painful.
But I'm trying to stay focused on the positives. First a care manager, then a gerontologist, and maybe in a day or so a Medicaid solution. Progress is relative in this situation but any and all of the above would definitely count.