Dementia Nights

Diminished

New pattern - once again he's (relatively) coherent and focused when I arrive, and when E is there.  After she leaves, and as the evening wears on, he fades.  The words go and the sense goes.  Finally he falls asleep - with random arm and leg movements, vocalizations, and (this time) labored, dry breathing - a kind of death-rattle breathing.

Thursday night, a first - I called from the train and he was completely incomprehensible.  I couldn't make out one sensible thought and could barely follow the words.  Then there were increasingly long silences, broken only by mutterings, as (I think) he drifted off to sleep.  That's never happened before in mid-phone call.  Eventually there was a three- or four-minute silence and no response to anything I said.  I told him (or maybe the empty air) that it'd be best if we both got some sleep, and I hung up.

I'm not sure if all this is the result of disease progression (if so, he's trending into Stage 7), or the increased Seroquel dose and the introduction of melatonin.  According to M it could be either.  I'll ask Dr. B about it at some point before his next appointment, in mid-March.

One thing's clear - his domestic situation is much better.  It's not just that E affects his personality in a good way - she's also doing real work.  After Jose finished the floor repairs, she rearranged furniture and cleared clutter to open up new walking lanes.  The apartment has never been cleaner or easier to move around in.  All of this makes me think that in the old days, when I had so much difficulty with her, she was underemployed.  There were signs then that she'd rise to a challenge, and that seems so far to be the case.

M seems to agree with me that things are good enough at home that I can afford to slow down the nursing home search.  I'll do the research but at least it doesn't have to be a state of emergency and I don't need to feel time pressure.  I have mixed feelings about this.  Part of me would like to get him located down here - I could keep a better eye on him and I'd be out from under the weekly trip, which is murderous.  On the other hand, if he's comfortable and safe and well taken care of at home...  My original goal was to keep him there as long as possible.  Maybe I can and maybe I should.

Hanging over all this is a sense of diminishment - his, of course, but mine, too.  Wednesday night when he fell asleep I was relieved - he was peaceful and I didn't have to manage the (increasingly surreal) conversation... or his obsession with my sleeping over, which once again was the main theme of the night.  And I could plan to make an early exit, the way I had the week before.  Then he woke up.  But I had momentum built up, and rather than stay another half hour, I told him I needed to go right then.  And I went.  And I felt terrible about it.  But the sense of fatigue was so overwhelming but just at that moment, the body took over and suddenly I had to get myself out the door.  I rationalized that I'd gotten there a little early, and I was only leaving a half-hour before I usually do, so I'd spent the same amount of time...  The truth is that on this particular night, I just couldn't take any more.  I'll try to do better next week.  But I'm left thinking that the disease makes all of us less than we were - the patient, obviously, but at some point the caregivers also.  I could let myself off the hook by saying that we all have limits but that ignores the way the limits expand and take over more of your personality over time.  He's diminished, I'm diminished, we're all being wiped out.  Or, more accurately, worn away. 

I wonder too if I'm having my last conversations with him.  If so, it's sad to go through them in this frame of mind.

I think I need to regroup and come back to the table with more to offer him, and less need to think about my own comfort.  Maybe there'll be time for that later on.

The Cat on the Ceiling, or, Microcosm

Wednesday's visit started well - very well, in fact. He was thrilled to have E back.  And she has her way of working with him - knew him when he was mostly whole, can refer to that, can get at him through humor ("Oh yeah, right, you and me gonna run off together...")  So when I got there he was in much better spirits and much more coherent than I'd seen him for a long time - laughing and joking and recognizably himself.  Then in the course of the evening it all came apart.  First his vocabulary fell apart and there were exchanges like this:

Him: I've got the big house when you came in.  Those are the big bhag rifles when you came in.

Me: Well, that's good - it's good to have those.

Him: Are you going to the big affles that we're going to?

Me: Well, I think so - I'm going to try to, at least.

Him: Maybe I can train it down on the thing.  Are there... maybe I can give it to you.  Because those guys - why won't they give it to you?

Me: Well, I think they might.  They might not have gotten the message.  But if you could give it to me, that would be even better.

And so on.  Conversations are more and more like this.  I'm able to participate in them because I can follow the shape - that is, the inflections and the structure of how one one "paragraph" follows another.  Because I know him so well I can get the tone.  Sometimes the content comes through but mostly not.  I try to sound engaged (I am, but not the way he thinks - I'm trying to decipher it) and respond generically - "that's really interesting" or "we should look into that" are useful generics.  Sometimes I can get a little more detailed - "well, when people say that I think it's because they're anxious," that sort of thing.  The best case is that I can make him feel he's getting a hearing and direct him onto something else.

I have no idea how anybody else manages to make sense of him.  If you didn't have a history with him you'd be completely lost.

On Wednesday night the word salad was an intermediate stage.  All of a sudden - we were in the bedroom and he was looking up at the ceiling - all of a sudden he said, "What's that cat doing running along up there?  Look at it!"  His vocabulary came together because he fully concentrated - on the cat that was running along the ceiling.  I said I wasn't sure how it had gotten up there but cats were like that - they like high places.  "What color is it?" he asked.  "Well, it went by pretty fast," I told him, "but it looked like it was white with orange markings."  I decided on the fly that Scooter, his big psychotic cat, was the one most likely to wind up on the ceiling so I borrowed his description.  I was hoping that'd provide some continuity when Scooter turned up later on the floor or the bed or wherever. 

There were a few more quick hallucinatory moments and then he fell asleep - hard asleep, with labored breathing and vocalizations and spasmodic jerking movements of the legs and arms.  His hands were curled inward and held tight in what looked like a late-stage symptom.  He didn't wake up before I left.

I had this thought a few hours later: It was like watching the whole course of the disease in microcosm.  Well, not the whole course but a big chunk of it - he was about a Stage 5 when I got there and he was trending into Stage 7 when I left.

To the extent that he was coherent at all - that's good.  But it reminded me of my mother's death.  She died of breast cancer, not Alzheimer's.  It was stable for decades but in the last couple of weeks she crashed the way people do.  When I'd visit she'd seem better than she was - my visits apparently meant something to her and so she was holding herself together by force of will.  After I left I'd call my father and he'd tell me that she'd fallen back into incoherence.  Something similar is going on here - at times, especially when he's in good spirits, he's able to generate a (mostly) intact personality.  But it's too much work, he can't sustain it, and he falls down the slope again.  A side note - my mother had the verbal distortions and the hallucinations, too.  The metastatic disease started expressing calcium into the bloodstream, and that interfered with cognition.  So one night at the hospital she asked me abruptly what language we'd been speaking, and said she thought it was "Moroccan."  At the end she lost all speech - her last word to me was when she pointed to a cup of water and couldn't find the word for it.  Instead she looked up at me and said "Wow."  "Wow" had irony in it and expressed everything - "look what's happened to me," "who would have predicted something like this?" "isn't this absurd and horrifying and sort of funny, too?"  "what can you do?" "Wow" is a koan I work with - it's a response to the whole world hitting you full in the face.  It's unfiltered experience.  It's also - my mother's death was also - a miniature preview of what I was going to go through with my father.  I didn't know it at the time but here we are. 

Since then he's had good nights and bad nights.  Friday was a good night - he was happy and relaxed and looking forward to my next visit, though as usual he couldn't keep track of when it was supposed to be.  Last night was a bad night - he was angry and paranoid and asked me if I could manage to get there "before my brains go away."  That last comment was a distress call but not only that - it had some irony in it, too.  My mother would have recognized it.

We're clearly back on a steep slide.  Shu, who's farther along, is having a hard time with the nursing home experience and reading her latest, I find I'm dreading that even more.  And of course I'm still dithering about it.  But even if he seems relatively stable at home for the moment, looking ahead, it's hard to feel that there's a choice.

E Takes Command

E is definitely back, for good or ill.  Mostly good.  Though I have to admit I remember why she used to annoy me so much.

Multiple phone calls every day since Saturday.  Updates on what she's doing for him.  Complaints about the night attendant - what she's not doing for him.  Admonitions to call Cousin Harriet, already, and set up a nice visit - maybe for next week?

My problem with the old crew was that they were incompetent and immobile and indifferent.  This is definitely better.  But it's a hell of a lot of work.

Sunday was my birthday - E took it on herself to tell my father about it.  I'd rather she hadn't - though in fairness I hadn't told her not to.  I was annoyed at first.  He can't remember birthdays and I don't want him feeling bad about things he's forgotten and rituals he can't really participate in.  But as it turned out, she was right and I was wrong.  He had a nice experience getting on the phone and wishing me a happy birthday.  This was a mixed bag - his sense of who I am continues to be pretty fragmented.  At various times during the call I was myself, my nonexistent little son Alan who lives with me in DC, his son Alan who was repairing the dining room floor (in real life a young guy who works with Jose, the handyman), Jose (who was also my father), and E.  But the emotions were positive and I mostly followed and more to the point, he was able to connect to his own better emotions, which doesn't happen all that much anymore.  On balance, I'll take it.

Since then she's gotten him washed (repeatedly) and shaved (mostly).  Today she took him over to Mt. Sinai for a quick procedure (he gets wax buildup in his ear and they have to keep irrigating it).  Later this week, M is going to have E take him to a local senior center - the one with the memory-impaired program.  He was supposed to have gone over the summer but he had one of his falls that morning.  Since then, we haven't had an attendant we trusted to take him there.  Now we do.

Again - if that works out, and if the rest of his experience seems to improve, I'll think about extending his stay at home.  I'm not sure if that's a good idea or not - there's a repeating pattern here where I work hard and eventually come up with a perfect solution to last month's problem, while current reality continues to slide out from under me.  I've finished a couple of work projects and now I really need to get over to the local nursing homes.  Shu is going through a similar tour - as usual I'm grateful to have company on the road - and judging by her account, it's going to take a while to pick one, let alone deal with waiting list issues.  If I start the process now, by the time I'm finished he'll be ready.  That is, he'll need admission.

Only minor upheavals on the bureaucratic frontiers.  J, the former day attendant, was furious about being taken off the job in favor of E and threatened to go to the union with a grievance.  If she does, she does, though M assures me she doesn't have a case.  Today a Meals on Wheels representative visited and said they'll have to discontinue service since my father now has live-in help.  Unless he's kosher, that is, because the attendants can't be expected to cook kosher meals.  I'll have to check but I think he's kosher.  Yes.  I'm almost sure of it...

The New York elderlawyers sent me the contact information I need, so now I can get CASA to send the information about the community trust to the agency, which under those circumstances might finally stop sending me arrears bills for the surplus I've been paying into the community trust instead of to them...

But for the moment things are mostly stable and mostly manageable.

Back to NY tomorrow.

The Return of E

Got a call from M a little over an hour ago - she reports that E has finally passed all the qualification requirements.  She'll be coming back to work this Saturday, for seven straight days.  They've assigned her to the day shift, Monday through Friday and every other weekend.

This is amazingly good news.

For those of you who've joined recently - E was my father's private-pay aide.  She started with him part-time in late 2003, right after his first hospitalization.  By last summer she was working 12 hours a day, seven days a week.  We had to let her go at the beginning of September to make room for the Medicaid crew, which has been mostly a disaster.

Now, if you're a longtime reader you'll remember that my relationship with E was rocky at best.  A year ago I couldn't wait to be rid of her.  That was then.  After the past five months I'm grateful to have her on board again.  I would have been happy enough with weekend shifts, just so my father could have some exposure to her.  I wasn't expecting the time commitment to be nearly as big as it is.

We'll have to see how long the euphoria lasts.  People don't change and I'm sure she's going to be as annoying as she ever was (for details, have a look back through the archives).  There's also the question of whether she'll be able to work with him effectively, given that he's gone down at least a stage and maybe a stage and a half since she left.  She's also going to want a financial supplement, and I'll have to figure out if that's possible, and how it balances out against nursing home costs.

But the optimistic part of me (yes, there is one) is wondering if it might make sense to slow down the nursing home search and see if, thanks to her being there, we're able to keep him at home a while longer.

I suppose that somewhere between the manic and the depressive, I'll figure out what's best.

For the moment at least I think I'm happy.

 

Small Episodes

Been down with another cold/flu thing the past couple of days.  It's a complete mystery, of course, why I keep getting those...

Catching up on the past few days...

The higher Seroquel dose and the melatonin seem to be taking effect.  He fell asleep during Wednesday's visit.  When he woke up he was convinced it was the next morning, and that I'd stayed the night.  I told him I had. 

This helped resolve a problem.  Periodically - and intensely for the past few weeks - he's been obsessed with the idea that I ought to stay over.  He frames it in terms of my well being - why not rest after lots of travel - but of course what he means is that he's lonely and he needs me there.  The fact is I really ought to stay there every so often.  But I don't.  I can't.  I tell myself the atmosphere is too chaotic and I'd be up all night, and I'd be unable to work my contract job the next day.  That might be true but my reasons are obviously darker than that.  For emotional reasons I just can't bring myself to stay.  Maybe it has something to do with the fact that this is the apartment I grew up in, and in spite of myself I fall into those then-and-now comparisons.  But I think it's really more basic - the idea of staying over is the point where the panic comes in.  So I go downtown to an inexpensive hotel that the job pays for, and I get six or seven hours of isolation and I feel recovered. 

I tell him that I have to take a late train down to Washington, and when I'm actually on the train the next evening, I tell him I'm already there.  I don't think any of this speaks well of me.  A stronger, more selfless person would be able to sacrifice a little and give him something he'd value - like more presence.  But I've never been able to pull it off.  M, when I first met her, asked me if I stayed over at the apartment and when I told her I didn't, said "Good."  She thought I needed the detachment.  Possibly.  It was a satisfying answer, probably because it told me what I wanted to hear.  Still, I say to myself that, especially compared to those of you who are in-home caregivers, this is fairly pathetic.  Noted for what it's worth.  The short version is that his sleep episode and the confusion that followed gave me an out, and now that he thinks I've slept over, I can refer back to that for the next few weeks.

Friday afternoon a call from M.  The attendants are complaining because the cats are defecating outside the litterbox.  Why don't I just have them adopted?  I let the initial flash of anger go by - even did responsible things like phoning the cat sitter, who said that the cats were vomiting, not defecating (it's possible to confuse this), and that the problem is most likely overfeeding.  Then I responded to M, along these lines: 1) He can still relate to the cats, and as long as that's the case, they're staying.  2) The time for an adoption is when I moving him to a nursing home, and I'm disrupting everything, not just his cat relationships.  3) I know the attendants are forbidden to care for animals, but once stuff comes out of the animals, they're no longer doing animal care.  They're cleaning the apartment, which is part of their assignment.  4) If they object in terms of hygiene, they'd better object to cleaning up after my father, too.  I included links to several articles about the positive impact of pets on people with Alzheimer's.

I'm not sure M was thrilled with me - she confined herself to saying she hoped the attendants wouldn't complain to the agency.  In her defense, when I interviewed her a year before I hired her, she told me she didn't like cats, and there's no particular reason why she should.  In my defense, we're past due for a healthcare system that cares for people, not disease states, and that provides home care in the home it finds, not the home it wants to remake for its own convenience.

I get irritable like this when I've got flu coming on.  See above.

Saturday night my wife and I went to a concert.  I called my father before it started and he told me that if I needed a whine-ans, he had very good news - I didn't need to look for one because he had a whole one.  I have no idea what a whine-ans is.  His intelligibility is now below 50 percent - there are increasingly long stretches of conversation where I agree reflexively and tell him that whatever he's said is really interesting, and we'll have to look into it further.  Sometimes the meaning surfaces eventually, but more often it doesn't.

Sunday afternoon he had the attendant call me - he remembered vaguely that I'd gone out, and was convinced something had happened to me and I hadn't gotten back.  He said he'd tried to call me himself, but the number had gotten very long - "It goes all the way from ALA to eight."  I told him everybody was fine.

Sunday evening I called him again.  He wanted to follow up on our trip to Brooklyn, and the guy he'd met there who had work for both of us.  I told him I thought that was really good, and I'd follow up with the guy.  Then the (latest) weekend attendant came in and interrupted him because she was going off shift and had to send him to the bathroom.  He went there and forgot about the call and so did she, and I sat there listening to 10 minutes of dead air before I decided that no one was coming back and I hung up.

In other words, nothing special.  Just a routine week.  Typical caregiver agonies, typical frustrations, typical confusion.  We keep on keeping on.  A copy of the trust agreement came in yesterday's mail, which means I can take it to the Maryland elderlawyer and finally get things moving down here.

Back to New York tomorrow for another round.

We Got Him to Dr. B

We got him to Dr. B - or rather, M did, with the help of two attendants.  There was apparently some resistance.  I don't know the details and I'm not sure I want to.

Dr. B's report - he continues to do well except for the Alzheimer's.  As I've mentioned before, this like saying someone's doing well except for the bullet in the head.  Really not good news.  Shu reported a conversation this week with a hospice physician who told her that "dying from Alzheimer’s is not a very good or happy or peaceful death," and suggested it would be better if her mother ran into something else - say, pneumonia.  I keep hoping for "something else" but right now it seems doubtful we'll get it.  This is going to be a long, difficult haul.

Dr B recommended more Vitamin D, and melatonin to help with the sleep pattern disruption.  She's also going to increase the Seroquel dose, at least on a trial basis.  The Seroquel might help with the hallucinations and depression, both of which are part of the syndrome.

Am now rolling through North Philadelphia, courtesy of Amtrak - getting work done, and working up the courage for tonight's visit...

Darkening Down

Since the last entry his mood has gotten dramatically worse.  Sunday and Monday, two long conversations about how awful his life is - "it's blank, it's nothing, there's nothing in it."  The "women" are "horrible."  He wouldn't wish this on anyone.  He hopes I don't get so old that I have to live like this.

His life is, objectively, awful.  But the mood shift is new and dramatic.  He never used to complain before - well, about particular situations, maybe, but never about his whole existence.  He was stoic up until the weekend but now he can't manage that anymore.

Although there's good reason for him to be depressed, I'm wondering if there isn't something physiological going on, too.  Starting Sunday night he had a new series of acute visual distortions.  During the Super Bowl he was watching the World Series of Poker on ESPN (a year ago I would have had him change channels but now he can't follow the process - it'd just upset him - and he wouldn't have been able to follow the football game either).  There was a series of commercials - one was a weight loss ad with before and after pictures sliding in from opposite sides of the screen.  He saw them and got agitated about all these new people coming into the apartment - where was he going to put them and how was he going to deal with them?  "I'm in a fog," he kept saying.  "I just can't figure anything out."  I told him we'd work on it together.  He liked this - told me repeatedly how much it meant to him that I was going to help him and that I was his son.  Worth noting that under heavy emotional load, he's able to remember the relationship.

Last night in a similar conversation, he told me the apartment was in terrible shape.  "The walls - they used to be white but now they're turning black."

Can't tell yet but this feels like another big downward lurch.

I'm obviously not an expert but it seems plausible that the mood changes, the bizarre visual processing and the agitation might all be the result of some new critical brain impairment.  It would be nice to have a medical opinion about that.  He was supposed to have gone to see Dr. B today but I'm not sure that he got there.  He's suddenly resistant to the idea of seeing doctors - doesn't think there's a point.  M had arranged to take him there and back but I haven't had any updates from her, so I don't know if the visit came off or not.  If not, a shame. 

Nevertheless - you don't need a gerontologist to know which way the wind blows.

Was able (finally!) to take some time out of the day to start reviewing nursing home and group home websites, and drawing up comparison sheets and checklists.  'Cause it's getting urgent.

Might have some new developments to track during tomorrow's visit.

His Newspaper Obsession: Flashbacks

A long strange phone conversation from the Acela Thursday night.

Immediate background - as I've mentioned a couple of times before, he's gotten obsessed with newspaper articles, specifically with finding those that might be important to me in my business.  This is challenging because he can barely read, and he doesn't entirely know what my business is.  But he tries.  For the past two or three weeks, he's decided that he needs to set aside whole issues of The New York Times for me to take home with me.  Once or twice the attendants have thrown them out, thinking (understandably) that they're doing what they're supposed to do, which is to clean house.  This causes upset, however.  Wednesday I told the night attendant to make sure everyone knows that the newspapers have to be held aside for me.  I want to make sure that he feels he's contributing something and making a difference.

Thursday night he had to tell me urgently about an article he'd just seen.  The problem was that I had no idea what he was talking about.  Most of the words were incomprehensible and the only sequence I could really make out was "Washington Post Book."  After a lot of work and a lot of generic responses - "Uh huh, that's really interesting" - I worked out that this must have something to do with some business development in the newspaper industry.  I was right - my wife told me later the article was this one, about the Post closing its standalone book review section.

He needed to tell me about it because he thought it suggested a business opportunity.  Over and over he told me that I had to get on the phone to those people right away, "because now they'll need you more than ever...  They're not even thinking about that and they don't know that you've got the smaller people... so you can talk to them and show them... they're not thought but you can get in there and do it for them."  In other words, the Washington Post was missing an opportunity and if I contacted them, I could show them some way to do it better. 

What's interesting is that he wasn't totally off target.  I mean, yes, he was - what I do for a living during my non-Alzheimer's hours is advise organizations about how to communicate.  I sometimes work with media companies but I don't help them make business decisions.  Nevertheless, looking at the positive aspects ("what have we got on the spacecraft that's good?") - he knew that the article was about communications, he knew that I consult about communications, he knew we both had a connection to newspapers and magazines (as in, writing for them)... Really not bad - he can't read the words but he was able to work out the significance, at least in a rough way.

I noticed this but was also having a different reaction - anxiety and resentment.  I'll explain why.  He was a writer and editor and I'm a writer (started in the business very early, when I was still in high school).  The fact that I went into his line of work - and did it so readily - says something positive about his influence.  In practice, however, dealing with him about professional issues when I was growing up was a royal pain in the ass.  He was a terrible writer - a good reporter but a terrible writer.  Melodramatic and ham-fisted.  In his articles, rescue workers were always "working feverishly" and "racing against time."  Sometimes they raced feverishly against time.  In his men's adventure stuff, sweat was always glistening and nostrils were always flaring.  In the sports magazines, star athletes always lived in a "pressure-cooker world."  He wanted me to write that way too.

Now, start with his persistent anxiety and his agitated manner, then add his style, his need to have an influence and his need to always be right, and you've got a recipe for really terrible father-son editing sessions.  Which they were.  He wanted to see all my copy and then he'd pencil it ("I'm putting on the green eyeshade," he'd say, trying to make a joke out of it) - adding all the flaring, glistening, feverish, pressure-cooker-world elements.  Most of the time I'd take them out.  I finally started sneaking copy out of the house.  When he found out about it he resented it.  I told him I couldn't write for two sets of editors - him and the ones I was working for.  He was pissed but I ignored him.  I guess this was the way I had my teenage rebellion.

He'd give me career advice, too.  Again, this was always urgent and anxiety-driven and involved the need to sell a lot of copy at low rates of pay.  Once I was working on an elaborate project that was taking a while and he got exercised and told me that wasn't the way to build a career.  "You've got to get it out there - bam bam bam bam!" he said.  He actually said that - and slapped his hands together on each "bam!"

Of course, all this has to be taken on balance.  If my resentment was really all that deep I would have gone into another line of work.  And he did teach me how to think of writing in terms of the audience and what it needs - I still use that.  So it wasn't a nightmare by any means.  But it did have nightmarish qualities.

What happened Thursday night is that as I listened to him, all this came back up.  I was sitting there on the train, listening to him and trying to react to him in my Alzheimer's caregiver mode, and I suddenly realized that, as he told me "here's what you've got to do," I was having the same sick anxious angry agitated reaction I always did back in the day.  And I had to stop and remind myself that what I was listening to wasn't his brain, it was his brain on Alzheimer's.  But it took an effort.

So why is that?  And what about all the Buddhist philosophy I sometimes talk about?  Why didn't that do me any good?  When you're an early-stage meditator and junior-grade incipient Buddhist, which I guess I am, you find that being a meditator and junior-grade Buddhist doesn't change you that much.  Maybe change happens later on, maybe it doesn't.  But for the present, your reactions are your reactions. 

What changes - and this can be helpful - is the way you react to your reactions.  The difference between Thursday and thirty years ago is that yesterday, I was able to have my anger/anxiety experience, and at the same time say to myself, "Wow, you're having an anger/anxiety experience.  Look at that.  That feels exactly the way it used to.  Oooh, there goes another wave.  Oh, wow."  Essentially you watch it happening but (at least on good days) you don't identify with it or get involved in it.

This can be valuable.  Because you're not getting all boiled in your anger, you're able to notice other things.  On Thursday night I realized that 1) his conversation was the Alzheimer's talking.  His ability to exercise self-control and restraint is pretty well shot.  But 2), what was driving him was the desire to connect and be relevant and be helpful.  That's a deep, ingrained impulse that isn't yet subject to Alzheimer's damage.  This in turn led me to realize that 3), back when he was whole and I was a teenager, his ham-fisted editing and career advice was probably driven by the same impulse.  So, 4), I was able to start reinterpreting the past experience in the light of the present one.  Maybe 30 years ago he wasn't trying to be annoying - maybe he was nervous about my future and trying to be helpful, and my teenage drama and arrogance and need to be independent just got in the way.

Several contradictory things are true at once.  He has Alzheimer's and he's out of control so you have to react to him differently.  You have a history with him and you can't help playing that out, in spite of the fact that he has Alzheimer's.  Your history is based on genuine irritations - but also on confusion and misinterpretation.  The Alzheimer's experience gives you something new to work with, so you can reinterpret your past and in some sense change it into something new.

This says several interesting things about Alzheimer's and about being a caregiver.  The first is that Alzheimer's relationships are real relationships.  You don't just kick into a new mode because your father or mother or spouse has Alzheimer's.  You continue to play out whatever history is there.  The nature of the relationship suggests that the history is likely to be very complicated and not entirely positive.  Caregivers feel angry and guilty and confused about this.  You don't want to be hostile to the person with Alzheimer's because the person, after all, has Alzheimer's.  But you can't help feeling hostile.  Partly this is because of the current burden that you can't quite cope with.  But partly it's because of all the baggage that both of you are carrying with you. 

Most people have trouble dealing with the negatives - understandably - and pull a sentimental gauze curtain over the big gnarly complex of anger and aggression.  On the Alzheimer's bulletin boards you see a lot of caregivers using infantile words and referring to "dear mamaw" or "dear papaw" and such.  Maybe they really feel that way but I somehow doubt it.  There's an undercurrent of resentment that comes through.  They might be better off if they could admit that they feel angry about the situation they're in, and the person they're caring for isn't necessarily someone they've always liked all that much.  Even in the best situations, no one is 100 percent lovable.  Getting that out on the table could help and might even make the caregivers feel less hostile.

The second is that people with Alzheimer's are still people.  They're not big wrinkled regressed infants (though nursing home activity schedules suggest that that's the prevailing view - more on that some other time).  They still have the needs and impulses they had when they were whole - especially the emotional compulsions to engage in your life and fix things and adjust things and make a difference.  Those impulses are going to play out until the emotional circuits and speech circuits go down altogether.  For that reason, too, the dynamics of your old relationships aren't going to go away all at once.

The third is that people who have Alzheimer's really have Alzheimer's.  I mention this because it's possible to over-interpret the second point and decide that, because the patient can draw on elements of his former personality, he or she is really whole.  He isn't.  The brain is going to keep producing solutions to problems, and ways of being engaged with people, because those are its most important cognitive/emotional functions, and it'll try to preserve them at all costs.  The brain will route around damage and try to establish new circuits that let it maintain the (for example) father-son relationship.  But because the damage is so extensive, the results can be fairly grotesque, both on emotional and cognitive grounds.  The person is producing reactions similar to the ones he might have when he was intact.  But the person isn't intact.  My Thursday night conversation wasn't really career advice - it was a grotesque, ghost-image parody of career advice.  It's like when an airplane crashes - big parts, like the engines and the tail, don't know they're no longer attached to the airplane and so they go on flying until they hit something - often winding up hundreds or thousands of feet from the crash site.  The career conversation was a similar kind of runaway process.

The fourth, and most important point, is that personal history is only valuable up to a certain limit.  We're all trained from birth to build stories about ourselves and others that we keep working on all our lives.  Especially in families you're constantly returning to some sort of core narrative or other - some situation that defined who you were in connection to a parent or spouse - and trying to re-address it and get it to change.  This is not helpful because it blinds you to what's really new and unique in the present situation.  My father and I are both carrying the baggage of who we were 30 years ago.  But we're not who we were 30 years ago.  He's who he is now - an Alzheimer's patient and not a writer or editor or capable parent.  And I'm who I am now - an independent person who doesn't need to rebel, and who doesn't need to fight for his approval because, frankly, his approval isn't worth very much. 

So it's better if I let the emotions wash by and tell him that yes, absolutely, that's a great idea, I'll definitely call the Washington Post to show them how I can save Book World, and yes, by all means, it's really valuable when he finds these articles for me and he should keep doing it.  Simultaneously I can reflect on the fact that my emotions are real and his compulsions are real.  They just don't matter.

Friday night when I called him, he told me about the article he'd found for Alan, and that he thought I ought to get together with Alan because there was a project - he couldn't remember the details but it was big - that Alan and I could work on.

Saturday night when I called him, he didn't refer to the conversation or the article at all.  Gone.  The issue was the weekend attendant, again.

I guess I'll deal with that now.