A few notes on the week...
First of all, Dr. R comes through. No surprises there -- Dr. R is an impressive person. He's an oncologist (he was my mother's oncologist -- kept her going for more than 20 years, which was no small feat) who doubles as an internist. He has an oncologist's manner -- steady, cool, detached and extremely forceful (there's warmth underneath, but it stays well protected).
He called me after he saw my father on Wednesday, while my father was still in the office. A very brief, focused conversation. "Well, everything is very much as you described in the, ah... document you sent to me. He's very pleasant, but there has been a significant loss of cognition." Emphasis on significant. Ah, so I wasn't imagining it. Sometimes -- especially when you're dealing with the relentless institutional cheer of the in-home caregivers -- it can feel that way.
Is there more I should be doing? "I think right now you're doing everything you can." I bring up the aide vs. attendant question, and he tells me he'll write a "strongly worded" recommendation in favor of aides.
I decided to use "significant loss of cognition" as the basis for the Riot Act Meeting on Thursday morning. I also decided that the Riot Act Meeting should be, in fact, Not The Riot Act Meeting. Background for this: as may be evident here at times, I have a huge capacity for anger. I got it from both my parents. My father still has his (apparently, his attempt to fire D was pretty spectacular and went on for hours -- she was afraid to show up for work the next day, which he spent apologizing). There were times when I was growing up that I was terrified of him -- not many, but they were memorable. It makes our current relationship interesting. More on that some other time. My mother had a huge capacity for indignation, usually on questions of justice, sometimes abstract and sometimes in the immediate family (she had a sense of humor, too, and so did he, and he used to tell her that the best model for her was Lucy, which is true). They were, of course, reacting to their parents, who were first- or second-generation immigrants, carrying all their instability along with them. So it gets passed down the line and I'm the current prizewinner. I've acted on it many times and it's never done me the least bit of good. The Riot Act Meeting was going to be another bad outcome. You gather a bunch of caregivers and call them out in front of each other and what do you get? Hurt pride, a lot of resentment, an ongoing sense that the patient's son can go do something unprintable to himself...
So why not try something different? I admit I actually asked myself, "What would the Buddha do?" You can fill in an enlightened figure of your own -- Jesus or Lord Krishna or Hillel or whomever. My take is they'd probably be light and spacious and clear and perhaps just a little bit ironic. But angry? Not very much.
So we got together and I tried to be clear and I tried to appeal to the better angels of their nature, assuming such angels were around somewhere. Under the heading of clarity: he's not just an old man who's getting confused, he's an old man with dementia and probable Alzheimer's and this is a real medical condition that's only going to get worse. He's going to lose the ability to recognize people, then to speak, then to hold himself upright... there are a host of possible outcomes and all of them are bad. So more work for everyone soon. It's work that I can't do -- I'm not there and I'm not qualified. That means I'm relying on them. I know the best they're capable of -- E forcing him into the shower, for example (he resisted but now he's thrilled about it and wants her to bathe me, too). I need more of that kind of work. I need more of that every day. Second main point -- resources are limited. He has a nice fantasy about my professional success -- he thinks I employ dozens of people (including the caregivers) and shore up major corporations all by myself. I let him think that so he won't worry. But the truth is there's a recession on and the communications business was one of the first ones into the tank. My income is a fraction of what it was a few years ago. And I have to let opportunities go by for the sake of my Alzheimer's management work, which doesn't pay all that well. My wife took a government job and that means a pay cut, too. My father set aside funds that he wanted me to inherit. That's not going to happen -- all those funds are going to go for his care, which is fine because that's more important. But they may not cover it all. If he lives five years, at the current burn rate he's in a state nursing home, and that's not good. I'm happy to pay for good work -- that's what the money is for and I don't begrudge it to anyone. But I need something back for every dollar. When an aide shows up and sits around for eight hours not talking to him and not doing anything, that means the dollars are disappearing and there's nothing to show for them. And I can't set fire to the dollars.
So the answer is, do your best but more often. Talk to each other -- you're from different agencies but you all work for me and for him and for Dr. R. Solve problems. Best case is, you see a problem and solve it and then tell me you solved a problem I didn't know I had. That's not always possible so second best is you see the problem and you flag it and we solve it together. And take the initiative with him. Don't let him direct his care. The old man with Alzheimer's doesn't get to cancel his aide coverage. Period.
There was much nodding. Apparent good feeling throughout. Even some tears welling up (E, when I talked about his prognosis -- perhaps there is good in her). Did it work? We'll see. It comes down to the results.
Toward the end we talked about levels of care. And here's where it starts going into the swamp. They were alarmed at the idea of shifting from aides to attendants. They, like C, encouraged me to call the nursing supervisor at the Visiting Nurse Service.
Which I then did. And we had a 45-minute conversation, filled with sentences like "we closed the case because Dr. R refused to file an M11Q because he hadn't seen your father in a year, but we could open a new case and do a new assessment if he files another M11Q." There was also an exploration of the several different agencies where a new application could be filed if VNS still refused to take the case.
At several points I was tempted to lose it, but managed to keep myself in check, which is just as well. Because in the end I learned something. We were talking about the aide vs. attendant question (I'm trying to figure it out as best I can) and I brought up the matter of the choking incidents, and the swallowing test, and the nurse's judgment that the test was too far in the past to be relevant. I said, "It's not like he got the swallowing test and they're going to treat it and cure his swallowing. It's a chronic progressive condition." And the nursing supervisor said, "Exactly." And he explained: the system is set up to treat acute conditions that, if you treat them, get better. A wound, for example. A bedsore would trigger nurses and physical therapists and social workers and god knows what else. But a chronic condition might as well not exist. The system can't see it. It's like those predatory animals that can only see motion, not stationary objects. If he chokes and injures himself, there's plenty of care to be had. But there's barely anything to keep it from happening.
This is just the leading edge of a very big problem -- one that goes beyond this case and for that matter beyond Alzheimer's. It's hard-wired into the society -- this complete inability to deal with complex problems that have multiple causes and lots of interdependencies. Which is to say, most of the problems we're facing right now. A simple technologic intervention? Of course -- put a stent in that coronary artery and off you go. But there's no system for dealing with the conditions in the society that caused the stress and the bad nutrition that made the stent necessary in the first place. And there's no system for dealing with Alzheimer's because from the system's point of view, there isn't actually an illness here. A brain aneurysm, sure. But the slow collapse of the entire brain? Sorry, that problem isn't in our database.
Add to this another issue -- the society's fetish for individualism -- and you've got the makings of a perfect storm. Hey, Alzheimer's caregiver -- you're on your own. Figure out the disease and pull together a whole patchwork of underfunded volunteer organizations and hey, what great initiative you're showing. We're all cheering for you. Shame about your lost productivity. And Alzheimer's patient -- speaking of productivity, well, it was nice you had all those productive years but since you're not productive anymore, you're not really in the center of our awareness. We're busy marketing to youth (and beyond that dividing the society up into separate, mutually hostile groups so we can market to all of them) and looking after the needs of our shareholders. We feel for you, but what have you done for us lately?
So here we are. Again, it's not just Alzheimer's. It's every problem that needs a solution based on the recognition that things are complex, not simple. And interdependent, not independent. And that we need each other's serious, systematic support. And the answer is, figure it out for yourself. No safety net -- none anywhere.
Figure in the demographics -- aging population, income disparities -- and this is going to be bad, very bad.
More to follow about it later.
Meanwhile, back at the site of the cognitive collapse... I had the usual dinner with my father and again he was in decent shape for much of the evening (though tired after the visit to Dr. R). But again there was the matter of that photograph of my mother. This time he didn't see it on television, but he wanted to get some television feedback. He said there were people on the TV having a meeting -- standing around in suits. And there were things (text?) running along the bottom of the screen. That's got to be CNN -- one of the early evening shows, like The Situation Room. And he took the photograph off the dresser and he showed it to them. And he asked them whether they knew who it was, and whether they knew how much she'd suffered when she was ill. He told me they didn't say anything. One of them seemed to look at the photograph but didn't have any comments, and they went on talking about something else.
I'm faintly disappointed -- though not at all surprised -- that Wolf Blitzer didn't have any insights to share with my father about the history of the photograph.
But it's OK. Really.
Because while it's true that his whole cortex is turning into a useless fibrous mass, and he thinks Wolf Blitzer is having a meeting in his bedroom, he really doesn't have any medical problems that require serious intervention.
Thank you, system. Thank you, society. It's a tremendous relief to us all.
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