Metaphor Country

HBO's Alzheimer's Project: No, It's Not a Memory Disease

Took time off yesterday from my life as an Alzheimer's caregiver to watch the first part of HBO's Alzheimer's Project documentary series.  My impression of "The Memory Loss Tapes" - very good, but I wish everybody would stop talking about Alzheimer's as a memory disorder.  It isn't.  It's about the total destruction of cognition.  The memory narrative is popular because it's easier to grasp and also easier to swallow.  The idea of having your cognition - your basic ability to think - destroyed, is just too threatening.  The idea of a memory disorder is much softer and more sentimental - it lets you form the image of someone drifting gently into a forgetful state and then disappearing in the fog.  That's not the reality, as the documentary clearly shows. 

The truth, however distressing, would be much better told.  Sometimes, if you want people to act, you need them to feel uncomfortable.  Threatened, even.

More thoughts here.

And more thoughts to follow after I've seen the rest of the films.

You're On Your Own

If I had any doubts going in, he got me with this.

You might recall that a couple of days ago I mentioned this.

And back in March on my Alzheimer's blog, I wrote this.  The paragraph in question, about three quarters of the way down, reads:

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?

I don't usually quote myself and I'm not doing it here to get all egomaniacal on your ass.  I'm doing it to point out that Obama's onto something big and critical.  There are millions of cuts on this story in the naked city.  Mine is just one of them.

By the way, the columns turned out to be a non-issue, didn't they?

Note to self: don't be a pundit.  Don't follow the pundit herd.

The real issue are elsewhere.

A Quick Note from the Road

I'll miss the debate tonight -- will instead be hanging out on Amtrak Train 175, on the way back from this week's gig on the Alzheimer's World Tour.

Just as well.  I'll let somebody else worry about the Big Issues.  Will instead stay occupied running the Alzheimer's support system that I cobbled together myself because, you know, we don't want institutions taking care of those things.  "We must trust the American people," as I think Bush said the other night...

Whatever.  Things are what they are.  And in the near term at least, the ambulance is not coming.  Once you realize that... well, you don't get self-reliant all at once.  But you do start to relax.

Last Saturday when I was hanging out with the Zen guys at the Zendo, and we were doing some Zazen (I was looking forward to writing that)... last Saturday... right after one of the more experienced guys had been going on about koans and enlightenment (they're Rinzai, so they do that), I was sitting there and toward the end of the sitting this thought came to me: your entire life is a fucking koan.

And I started to relax.

Side note: Zen is not primarily about relaxation, as they'll tell you over and over.  But it doesn't hurt.  And since at the moment I'm dealing with this, among other things, I figure I'll look for help in multiple quarters, Zen being one of them.  Nothing like focusing on unmediated reality to get you straightened out...

Side note II: am also thinking about Job as the most Zen (Zennest?) thing in the Bible.  Might say more about that at some future point.

In that spirit and in that general mood, I came across this.

After you've read it, check out the comments here.  They're a hoot.

Actually I should be more respectful.  I understand the objections, and might even be inclined to agree with some of them.  But in spite of that, the piece struck a chord.

For the moment, let that be my character note.

And Now, A Blog About Alzheimer's Called...

...the Alzheimer's Blog.  The Alzheimer's Blog!  The Alzheimer's Blog!!!

Sorry -- was thinking for a moment of the Gumbys introducing The Architect Sketch.  If you need a reference, click here and scroll down to the fourth cue.

The blog is actually called Dementia Nights and you can find it here.

The Alzheimer's narrative is getting fairly thick, and as noted earlier, I thought it deserved a space of its own.

Besides which -- here on Metaphor Country, we've got new territory to mark... ah... map... ah, you know what I mean.

So, for the moment, it's family entropy on Dementia Nights, and everything else over here.

Hope that makes sense.

Cognition, the Latest

So the Visiting Nurse Service program is rolling in.  Jennifer is thankfully on board, and beginning to look after things.  On Wednesday my father went off to his first Senior Center tour.  Did not go well.  "Senior Center" in this case seems to refer to a sort of warehouse where they feed 70 or so of the isolated elderly, with limited staff and not much supervision.  Aides can't sit with the guests because that would, you know, limit the socialization.  So everyone sits around and the people who know each other talk to each other and the people who don't know anyone are left to themselves and there's the occasional fall or other medical emergency to liven things up.  He got disoriented and alarmed to the point where the aide came over and pulled him out of there and took him to lunch at City Diner, which shows good thinking as far as I'm concerned.

We'll try Senior Center number 2 tomorrow, then probably roll over to some other options.

The sad thing is that my father had gotten the idea that he was going to have the chance to hang out with other WWII vets and tell them some of his stories.  He doesn't really remember the stories any more, but he used to tell them a lot and so I do.  Which puts me in the odd position of being his memory.  So I told him all about his past and he took notes and was all ready to stand up for himself.

Maybe at the next gig there'll be some payoff for all that effort.

Meanwhile the time of day/day of week disorientation continues -- after a good run, we had five straight episodes last week when I tried and mostly failed to convince him that what he thought was morning was in fact the night before.  The explanation works up to a point -- he wonders about the strange weather that makes it turn dark all of a sudden, and you explain that that's because the sun set and it's Tuesday night, and he repeats that, then asks you if you're about to leave for work this morning. 

And on the other hand... without really thinking about it, I mentioned the other day that I'd seen the little mosaics of hats in the subway station at Fifth Avenue and 23rd, and he explains that the Flatiron district was once the millinery district -- and the millinery beat was the first one he covered when he got out of the service and became a reporter for Fairchild.  He doesn't remember the name "Fairchild" but the rest of the details are there.

So it's not a linear process by any means.  More a question of which particular centers of information synthesis have been bombed (plaqued?) into rubble over the past few days.  The one that takes light and dark and converts them into night and day is shot to hell.  The one that handles late-1940's New York City business geography is doing fine, thanks.

There's probably something in this about memory and identity and soul and all that.

And if I had the energy, I'd think about it.

An Alzheimer's Saturday

Or maybe it's just a dementia Saturday, since we're still short of a formal diagnosis.

At any rate -- I visited as usual and talked to my father about asset transfer and he was agreeable.  Then he choked on his panini and I had to Heimlich him.  It wasn't the first time.  He drank a little coffee and I made a mental note to scratch the panini (the melted cheese is a problem) and we went on talking about asset transfer.

At a point later on, when we were watching the Mets, he asked out of the blue what the provisions for the assets would be if something happened to both me and my wife.  Good question -- something that I'll have to take up with the lawyers.  He seems to pull himself fully together at times, particularly when survival issues are at stake. 

At a point still later, I gave him a check to sign (it was filled out, but I like to keep him involved) and he asked me how to spell his name.

Again -- things are what they are.

It was nice of Newsweek to give us all a cover story this week.  Truly comforting.  I mean that without irony.  It helps to know you're part of a trend.

Speaking of which -- I hadn't really meant to make this an Alzheimer's blog and still don't intend to.  But sometimes you go looking for themes, and sometimes they just find you.