Alzheimer's Buffet

Ah, where to start?  Might as well go in order.  No great thoughts today.  Not even anything extraordinary.  Just a sequence of typical things over a couple of days - kind of an Alzheimer's tasting menu.

Yesterday morning, we finally got him to the head and neck surgeon.  Or, more accurately, E did.  He insisted on getting there three hours early - then threw a fit because it took the surgeon so long to see him.  He threatened to leave.  E did what she could, then called me on her cell phone (I was on the train heading for New York) and put me on with him. 

He was enraged.  "Now look, the thing is, there's no reason for us to be here, anybody could take anything off the top [meaning his head] and they've already done that..."  I told him he was early.  "No, we're not."  I told him it was better just to get it done.  "No, it doesn't make sense."  I told him Dr. R wanted him to get looked at.  "Well, then let's go see him in his business..."  I told him it'd be worth waiting a little longer and all they had to do was take the bandage off, which'd be quick...

"Now you listen to me, son..." he said.  That was amazing.  It's exactly what he used to say to me when I was a child and he got (memorably) enraged.  It was so radically different from his normal speaking voice and way of speaking, I still have nightmares about it.  Or rather, my limbic system still has nightmares about it .  My limbic system tends to react to stress, especially stress from authority figures, by dumping huge quantities of cortisol into my system and getting me all jazzed to run for the exits.  Early imprinting, you know.  This can be a challenge at times - like in business settings and, more broadly, in the adult world.  But I work with it.  Everybody has to work with something.

And now there we are and there's that voice again.  Except that it's just the ghost of the voice, and he's just the ghost of the scary enraged authority figure.  This occurs to me in a fleeting way as I hear him say it - I have the impression that there's an empty space where my anxiety reaction ought to be, but there's no reaction.  I tell myself that there's something interesting there about transience - the thing I was so afraid of doesn't exist anymore and if that's the case, if it can disappear, then maybe it was never there in a really substantial way in the first place.  Yes - and it'd be nice to serve up all that Buddhist insight in a nice Freudian sauce.  But who has time?  Because I have to think of the next thing to say and my gambit is to try him again on the idea that Dr. R wants the bandages off and this time he accepts the idea and decides to wait.  An hour later he's back home with the bandages off, sounding tired and a little abashed.

So we've got that out of the way.  And I'd like to get back to my Buddhist/Freudian reflection except that I'm at a client's office and I've got to get some work done.  And then E calls at 6:20 in the evening to tell me that, sorry, she can't come in tomorrow because she's got a contractor coming.  Yet again I put aside the temptation to strangle here (which I remind myself won't work because she's not in the room, she's on the phone) and just suggest that maybe it'd be better the next time around to have a little more lead time.  And then I start a series of calls and conversations to try to get replacement coverage.  D can't do it without authorization from a Partners supervisor and E's sister can only cover 'til noon.  So I call the Partners answering service, which sends me over to the Partners night supervisor, who tells me to call back the next morning to speak with a day supervisor.  Which I do at 7:30 a.m.  At 10 a.m. they still haven't found anyone to cover.  I'm between two meetings and I call E and she tells me that, miraculously, the contractor finished early and she's on her way to my father's and she can get there by noon.  Crisis averted and I go back to being a productive member of society, at least for a while.

In between there was last night's dinner.  I'd been worried about it because of the long Sunday monologue about the DOROT volunteers, and his saying repeatedly that there were "things we needed to go over", which, as noted, I took to mean his home care staffing.  But it turned out that what he wanted to go over was the address book - he insisted on reading it to me again.  He was also puzzled by the GuildNet folder, which turned out to be one of those standard information packets that home care agencies like to leave behind when they visit.  (You'll see from the link that I've figured out what GuildNet is).  The folder was very thick and for that reason I can see why he might have been alarmed by it.  But it turned out to be useful - it was just the right weight and firmness when I needed something to kill an enormous water bug that turned up in his bathroom.  Beyond that, I'm sure they have a fine program, but because of the managed care restrictions it's not going to work for us.

Then he took me on another long memory trip.  It's one we've taken before - a long ramble through the death of "the mother" (again, this is a conflation of his mother and my mother, who now seem to be permanently fused together - con-fused?  Need to look up the etymology of "confusion").  The narrative is getting stranger.  As usual he remembered a few things about my mother's final illness, and a lunch that we had in a neighborhood restaurant after the funeral.  And then we were joined at the lunch by the two Irish maids who used to work for his mother (and who in fact joined us at a lunch after her funeral).  And he sheared off into memories of his mother.  At a certain point - I'm not sure how - we got back to my mother, and he remembered a long conversation I'd had with him in the cafeteria on her first full day in hospice.  He'd leveled with me then for the first time (comprehensively, at least) about his ambivalent feelings about his marriage.  I told him I understood, and that made a huge impression.  Now he remembers the conversation as "the day I agreed to be the father and you agreed to be the son."  And, logically, he decides that I must have been really young then.  So the chronology shifts and he wonders how I dealt with my mother's illness when I was that young.  And I tell him it was easier because by the time we had the conversation I was in my 40's. 

And he asks, "After I agreed to be your father and you agreed to be my son, how long did that agreement last?"  Oh, a long time, I tell him.  In fact, it's still in force.

Which it is.

You'd like to dwell on that thought but again, there's no time.  By the time I get to the hotel it's midnight (this is typical on the New York visits).  And then, after spending the morning trying to track down his aides and oh, by the way, getting some business done, I'm overdue to get back to his finances.  Today that means re-depositing the bank check that NYSARC sent back via the lawyers when they decided that I didn't have the authority to create trusts (the existing ones notwithstanding).  Once it's on deposit I can write a check to the new trust, the name of which escapes me.  But first, I have to jump online and pay several of his bills and move up the dates of several others to get the money out of the checking account and make sure the NYSARC deposit doesn't break the $4,000 Medicaid ceiling.  After that there was the e-mail to M to ask whether E should go along to the gerontology visit... and advise her that the gerontologist's office still hasn't sent the questionnaire that I'm supposed to fill out in advance...  I also had to follow up with her about the agency (Premier, is it called?) that the lawyers recommended late on Monday, after my last post.  It turns out that although I'd instructed Guild Net to request an application for Partners, we're not bound by that, and we may in fact go for Premier (?) instead.  After this morning's experience with Partners, that's possibly just as well.  It's also just as well that I sent my second draft e-mail to the lawyers, thanking them for the referral, as opposed to the first draft e-mail, which said that while I've had a long set of mishandles with Partners, the application process has gone on for 14 months and at this point I'd hire Idi Amin if he was Medicaid-certified...

No.  Moderation.  Moderation.  Always the middle way.

Finally a run for the train and then the evening phone call where my father asks me again when we're going to start our business with Dr. R...

The middle way wears thin at times, especially when you most need it.  I'll confess that late in the day I had an unkind thought about Shira and her complaint.  I thought I was over it but fatigue gets the better of you.  The thought goes like this: you're the incident commander at a 10-alarm fire and suddenly you have to drop everything because the guy who runs the donut wagon feels unappreciated.  This reflects badly on me for a couple of reasons - one, because as I've said, there's more to the story, and two, continuing the analogy, the crew fighting the 10-alarm fire really appreciates the donuts and that means the donut guy has an essential role to play, too.

Nor am I complaining about anything else - except maybe the total absence of a system for dealing with Alzheimer's or any other chronic illness, and the fact that we're all flailing around on our own out here.  I've talked about that before and I will again.  But it's not going to change on my watch.

Yes, at the end of the day your frustrations and your demons are beginning to rattle around.

By way of an antidote, this story: I once heard a talk by a Zen teacher who said that whenever he met with his teacher, and whatever he talked about during those meetings, the teacher would come back over and over to one question - "how is it?"  Emphasis on "is."  What he was trying to do was convince his student (the guy giving the talk) to shut down all the speculations and the gyrating and just focus on what's out there.  And also on what's inside, which is part of what's out there.

The guy giving the talk said that he tried many different answers and the right one turned out to be the Walter Cronkite answer: "And that's the way it is."  Meaning, you're not going to change it.  Or if you are, you have to start by taking a good hard look at it.  So deal.

And that's the way mine is.

And that's the way my father's is, and his is considerably worse.

If you're on the territory, I hope yours is somewhat better, but suspect it might not be.

Nevertheless I hope your Alzheimer's buffet has some variety, and that you're hanging in.

Comments

[Amy]

I know you aren't asking for permission, but I think it is perfectly ok for you to be frustrated by that comment. It was really inappropriate, and I honestly felt offended by it on your behalf. As if someone in your situation doesn't have enough to think about.

[Alan G. Ampolsk]

Well, I appreciate that and there's no question I'm frustrated -- I suspect that comes through. I'm just trying not to act out (or act on) the frustration quite so much. I used to do that a lot and my main reward was a cardiac stent -- which, surprisingly, didn't have much of an effect on the people who'd annoyed me. These days I have the same initial reaction, but then try to remind myself (for example) that this is probably a young person who sees things in clear, stark black-and-white, and doesn't necessarily get all the dimensions of the problem. Speaking of which -- and this is a big point -- her sister is doing my father a lot of good, so I need to take that into account, too. I'm sorry she decided not to stick around and join in the conversation -- better things might have come out of that.