Dementia Nights

So It's a Memory Disorder After All. Damn.

Within five minutes of showing up for yesterday's visit I found out why my father was resistant to seeing the head and neck surgeon.  It seems he has no memory of the surgery at all.  As far as he's concerned, he's had a bandage on his head for years.  The aides give him a new one every day.  He thinks it's stylish and he looks good in it.  Why change a system that seems to be working?  He was convinced that visiting the doctor meant an entirely new round of treatments and he couldn't understand why he needed any.  It could only come out badly.

Here's a lesson.  I've been convinced -- I've even been telling friends and acquaintances -- that the popular conception of Alzheimer's is wrong.  Everybody talks about it as though it's a memory disorder when what it really affects is cognition -- the ability to manage thoughts and processes.  For example, you look at the daylight outside but can't take that fact -- that visual impression -- and extend it into a fully developed thought, like "it's Wednesday afternoon, July 2, 2008."  Forming the thought -- locating yourself in the calendar -- is a hugely complex task with many steps and if some of the steps are disrupted, you can't get from point A to point B -- from the sense impression of daylight to the extreme abstraction of the calendar.  What seems to be memory loss -- the inability to recognize people or remember events -- is really a failure of abstract processing.  You can't put the parts of a face together into a person or put a few stray memories together into the story of your life.

Well, maybe.  But suddenly I'm forced to say that there's also a basic thing called memory and that fails, too.  How else to explain the fact that he had a huge life experience -- the surgery -- seven weeks ago, and it's now gone without a trace.  It's not just that he has a sense impression (say, recalling that he sat in a waiting room in a gown) and he can't make anything more of it.  It's that the sense impression itself isn't there.  Not just a processing failure -- there's nothing to process.

I guess that in a lot of cases, memory is the first noticeable capacity to go.  In our case it wasn't.  There were years of progressive cognitive failure -- first anomia, then aphasia, then difficulties with reasoning (how to use consumer credit) and processes (how to write checks), then the sleep disruptions and disorientation in time and behavioral issues and problems in visual processing and basic thought.  But until this year, memory stayed relatively intact.  He lost distant personal history through the course of the winter, and in the spring he began conflating people and events, and now it's summer and the close-in events have disappeared.

It seems predictable when you think about it.  Alzheimer's affects the whole cortex ("diffuse cortical illness" is the technical term, I think).  Given that everything is involved, there's no way to predict what capacities will go at any given time and in what order.  To us it was a cognitive problem for the longest time.  But now we're coming out where everybody else does.

A little later on in the evening he launched into a long consideration of his living conditions.  He is, he said, thinking for the first time of moving to New York.  Keep in mind that he lives in New York.  But of course I didn't try to contradict him... wanted to see what would emerge.  He thinks, he continued, that he's better off staying where he is, in Atlantic Beach (a small community in Long Island where he spent childhood summers, and where he later bought a house so I could, too.  We left there in 1975).  What's good about Atlantic Beach, he said, is that all his services and doctors are close by, and in New York that wouldn't be the case.  But he's wondering about it because winter is coming on -- what will Atlantic Beach be like in winter?  This will be only the second winter that he's been there.  But he worries about leaving, because this is the home that "our mother" (a combination of his mother and my mother) lived in, and it's the home she died in.  And it's the home where he grew up...

But then, there's another consideration, he said.  I don't live in Atlantic Beach.  Is it fair for him to expect me to keep traveling to Atlantic Beach to see him?  After all, I need to have my own life.  So maybe it'd be better if he lived closer to me...

I went with that since it's been on my mind -- told him that if he wanted to, he could always consider moving to Washington, where we'd be closer and he could see us more.  And he could live less expensively (he'd been concerned about the cost of New York).  And as for our mother, well, we have a lot of history in this apartment, but on the other hand, when she was alive, we were there to take care of her, so she never had to live on her own the way he does.  Maybe if she had, she would have decided to live somewhere else...

But the important thing, I told him, was just to think about these things and keep in mind at the same time that we don't have to decide anything at any particular point.  We can be flexible and always make it the main priority to do what's right for him...

So there we are.  Short-term memory is totally wiped out.  His sense of where he lives and under what circumstances is completely incoherent.  But the emotional core is still there and so is the ethical capacity (he wants to do what's right for me).

Will try to work with those until they go, too.

Alarums, Excursions

It's been a relatively quiet few days.  Just a couple of spikes...

Thursday, his cousin Harriet called him to invite him to visit her in New Jersey.  Harriet, as I've mentioned, is a month away from her 93rd birthday and has mild heart trouble but her mind is razor-sharp.  Her manner can be razor-sharp, too (I figure at that age she's earned the right), and for reasons I can understand, she's always resisted the idea that something is wrong with my father.  Not this time, though.  After five minutes of conversation she got off the phone and called me in a state of alarm.  Did I know that something disturbing was going on with him?  Yes, Harriet, I'd sort of noticed.  My fault, actually.  I knew she'd be calling him and should have brought her up to date about his condition but with one thing and another hadn't gotten around to it.  So, while standing in the lobby of the Marriott Marquis (I'd been on the way to sit with a client at an awards dinner) I filled her in, then called him and calmed him down and told him we'd definitely be visiting Harriet, but it'd take a while to work out everybody's schedule...

Friday, he was fixated on my phone number.  Said as long as he knew what the number was, he knew where he could find me.  He started reciting it.  Every time he came to the number one, he said "up" instead -- a description, I guess, of the way the numeral looks (it seems to point upward).  And every time he came to an eight, he doubled it (a visual processing issue?  Is he seeing the two ovals and multiplying that into two figures?)  So -- "nine up seven, five eight eight nine..."  I told him he'd gotten it perfectly.  Every time I call him now, he's immediately convinced that he's called me.  He feels good because it means he can still dial the phone.  I let him believe this.

Last night, confusion.  I was coming up to visit him a day early (I'm trying to avoid traveling on the Thursday before the holiday).  But he had an earlier appointment with the head and neck surgeon.  How would we meet?  Would we meet at the restaurant?  In point of fact we haven't eaten in a restaurant in three or four years.  I told him it'd probably be easiest if we called City Diner and had them deliver the food to the apartment.  This is what we do every week.  "Oh, and then we can eat it right here in the room," he said, as if it was a new thought, which for him it was.

This morning the confusion turned into distress.  Either the appointment plus the visit was too much for him, or his immune system pulled another job action, or both, but he came down with another full-blown episode of gastric distress and asked me to postpone the appointment.  Since it's just for a dressing change, I did.  I called back and he'd left the phone off the hook.  So I called E on her cell phone and we had the following conversation:

E: "You shouldn't have told him you were coming up today.  It gets him upset, what with the appointment.  You should have told him it was another day."

Me: "But I"m coming up today.  I'm on the train and I'll be there tonight."

E: "Yeah, you should have made it for another day."

Me: "Don't presume to tell me my schedule..."

She apologized -- about as cheerfully as the last time.  This was our first conversation since the last time.  I noted the degree of improvement - zero - then e-mailed M to ask if there'd been any progress on the Medicaid front such that I could fire her soon.

After that I settled back into my e-mail exchange with the lawyers, who've just told me that NYSARC has fallen through, and we need to shift to another community trust, and can I send the surplus income checks to the new trust?  To which I replied, sure, as soon as you tell me how to write a check for $3500 while keeping the checking account below the $4000 Medicaid limit and also paying a weekly ransom to E and her sister...

By me this counts as quiet.  Relatively, as I said.  You adjust your expectations as you go along.  It's not a perfect system, but it gets you through the week.

Time to head uptown now and visit...

Fat Cats, or, Entropy

My father's cats have gotten shockingly fat in the past two weeks.  Partly my fault -- the aides weren't feeding them and I wrote one of my notes and now they're drowning in food.  But I think it also suggests that he's not interacting with them as much as he used to.

Things are continuing to slide -- again, not in any big dramatic ways, but there's more progression.  D reported that, for the second week in a row, he'd tried to phone me by putting the piece of paper with my phone number on it to his ear.  In conversation there were suddenly many more repeated questions.  For example: I told him the story of my (fictitious) lunch with Dr. R.  You'll recall that this is the latest round in my attempt to get my father to go along with M and follow her program and visit some of the new physicians, in particular the gerontologist.   As I was telling the story it came to me that my father always wants to be of service to other people, and if we could position all this as a way for him to help someone else, then he might be more willing to go along.  So I reported that Dr. R had identified M as his partner, and that we'd discussed his plans for a pilot project for older patients.  My father will participate in the trial by going with M to visit new doctors, and M will try out some new techniques in staff supervision, and then we'll report back to Dr. R on what we learn.  That, in turn, will help Dr. R decide how to treat other people. 

My father thought that was a great idea.  And then he wanted to know if Dr. R remembered us.  In particular he wondered whether Dr. R remembered the incident, after a dispute with another physician, when my father went into Dr. R's office and asked him to take all of us into his primary care practice (Dr. R was exclusively my mother's oncologist at the time).  He asked me this 12 times.  I counted.  No connection at all from one round of answers to the next.  His memory of making the request is intact, maybe because it was emotionally charged.  But that's getting to be more the exception than the rule.  He also remembers Dr. R as his childhood doctor, and his current apartment as the one he grew up in, and my mother as his mother...

There's also an uptick in gibberish and word salad.  During a sports news roundup, he asked me if what we were seeing was a punto infleg garanget.  I said, "I'm not sure -- it could well be."  I say that a lot these days.  It's a new coping skill.  You sit balanced over the conversation, listening closely, trying to figure out what he's saying, and if you can't, then at least responding in a way that makes him think he's understood.  It's better if he stays confident and positive to the extent possible, and you hope that the meaning will surface in the next sentence or two.  Sometimes it does, sometimes it doesn't.

It was that kind of night -- small things, little bits of texture.  Evidence that he's shedding parts and they're arcing downward.  Will try to stay alert and see if I can follow them down. 

Cat Fight (Not Involving Cats)

Have been offline again, dealing with a new massive headcold.  It came over me on Friday, just after my episode of extreme rage.  The episode of extreme rage came over me as a result of the latest home health aide adventure...

Short version: It was the usual comedy (?) of errors.  D realized she was going to be 90 minutes late for her afternoon shift.  She told her Partners supervisor and asked the supervisor to call me.  The supervisor, trying to keep Partners' perfect record for supervisory incompetence intact, didn't.  Which is why I got a voicemail from an enraged E, wondering why she hadn't been relieved at the end of the day shift -- she had a family event and things to do.  It was somewhat later that I was able to return phone calls.  The first call was to my father.  He was extremely agitated because, for reasons he didn't understand, two of the aides (he couldn't name them) had staged an enormous screaming fight in front of him.

D was there, and I asked him to put her on the phone.  The conversation was decently civilized.  Just between you and me, I agree with her that E shouldn't be barking orders at her, or trying to act like her supervisor, or paying her on the side to cover E's hours (excuse me?)  But I suggested that screaming fights were maybe not the best possible activity for them to be having in front of my father...

I called E at home and she was her usual self -- sullen and defiant.  She explained to me that D should have called her directly... and that D didn't do that... and that "I'm not the one that started it -- she was the one who got the attitude with me."  Which comment led me to say, in a calm, steady, level tone of voice (I vaguely remember seeing my cats panic and run for shelter at this point), "I don't care who started it!  You're not six year-olds!"  I went on to suggest -- again, calmly and quietly (cats were nowhere to be seen) that my father isn't an old man who happens to be a little weak, he's a patient with Stage 6 Alzheimer's Disease, and he can't deal with emotional upset because of his fatal brain condition, and if she'd bothered getting any training in dementia care she'd know that, and if there was any repeat it'd be a firing offense.

She apologized sullenly and hung up.  My headcold followed.

I actually debated with myself before laying into her.  Given that I'm planning to let her go in a matter of weeks for financial reasons, why complicate the picture by getting into an argument about the quality of her work?  But this was so far over the top that I didn't feel I could let it pass.  I raised the question after the fact with M, who thought I was right to call her out.  Said this is what happens when aides are unsupervised (or, maybe by implication, when the untrained guy who lives out of town tries to supervise them).

This needs to end. 

It will end.

On a more positive note... in between phone confrontations, I was able to talk with my father and roll out the fiction that Dr. R had hired M and assigned her to work on his behalf.  He was so happy that his memory of her second visit changed immediately -- where the day before he'd remembered her as cold, now he remembered her as warm.  He also decided that Dr. R and I would be going into business together and that he and M would somehow be involved.  Of course, I said. 

I'll discuss that with Dr. R at our fictitious lunch tomorrow.

And so we roll on.

Please note -- apart from a moment of emotional distress, no actual cats were harmed in the filming of this cat fight.

Fresh Turbulence

My father didn't have a particularly good time during M's visit.  As in, he freaked.  I got to spend a half-hour on the phone with him last night, scraping him off the ceiling and entertaining my fellow passengers on Amtrak Train 175.

I'm not sure what went wrong.  Actually, I'm not sure that the word "wrong" applies here -- my guess is it's all just part of the process.  But reconstructing it... it seems she brought up the idea of taking him to new doctors (as in, a gerontologist, and maybe also an ophthalmologist and a dentist and someone to look at his persistent earache -- he's long overdue for some general maintenance).  He doesn't like the idea of going to doctors in general (can't blame him), and he doesn't like it when aggressive strangers come up with the idea.

So he took it out on her.  Said she wasn't the same person as last time (am wondering if he means this literally).  "She was flat and there was no life and there wasn't even any life in the handshake.  And she said she talked to Dr. R and I don't know where she comes off talking to him..."

I decided to use Dr. R as the pivot point.  He reveres Dr. R (again: the result of Dr. R's keeping my mother alive through more than 20 years of breast cancer).  Sometimes resists seeing him but will always listen to him.  So I told him this was all Dr. R's idea -- Dr. R wants him to see some other doctors the way he often does, and we've had good experiences with all of them.  And we'll be careful and talk to Dr. R and make sure that M is the kind of person we want to be working with...  This appealed to him, and he sent me off to take Dr. R to lunch and talk things over.  Lunch with Dr. R being an impossibility, I'll tell him tonight that I talked with Dr. R by phone, and that we've arranged lunch for next week.  Next week I'll have a fictitious lunch with Dr. R, and report back that Dr. R has full confidence in M, and we'll move on.

Obviously I'm shorthanding this -- there were a lot of emotional surges and there was a lot of backsliding, and of course the cell phone connection dropped at one point and he couldn't hang up the phone properly... which led to a small technology-based homecare farce (I called E and asked her to call her sister to get her to put the phone back on the hook -- I don't have the sister's cell phone number so I had to go the long way around...  E somehow called her sister at home... her sister called me later to ask me why E had yelled at her children... I said I really didn't have any insight into that...)  Just throwing that in for local color because in the end we got done what we need to.  I didn't even have any adrenaline rush or cardiac symptoms.  Am getting better at the whole detachment thing.  Burnout helps.

E, of course, took the opportunity to trash M, both to my father and to me ("I don't know, she really doesn't know how to talk to him").  That's nice.  And predictable.  And doesn't change the picture.

Maybe he'll do me a favor and have some short-term memory loss between yesterday and tonight.  I doubt it, though -- never happens when the emotions are engaged.

For the record, I don't think M did anything wrong -- I think this is a predictable reaction to a necessary series of steps.  Maybe she was a little brusque -- she has that quality.  It helps when she's slamming Medicaid applications through the system.  Might be a little disruptive here.  On the other hand, what's she supposed to do?  Can't accommodate him because at the end of the day she's got to take care of him, and that includes doing things he dislikes.  For what it's worth, I told her to use Dr. R's name as a talisman whenever she has to -- just say "this was Dr. R's idea" or "Dr. R wanted this to happen."  The resistance won't go away completely but it'll settle down a lot and we'll get where we need to go.

After the call, when I was slumped against the window staring at the refineries north of Wilmington, I found myself thinking that the second half of the year is going to be lively as hell, entirely in a bad way.  If he continues to fall apart at the current rate, we're bound to have a couple of acute episodes, and we may even have to line up a nursing home for him.  I have no energy for any of that.  But I also have no choice. 

So I guess I'd better get ready for more intensity.

Precipitous

Got a quick reply from M to my e-mail message:

Just visited Dad and saw much of what you described.

Even noticeable difference since my last visit.

I'm sorry this decline seems so precipitous.  It's very hard...

In my answer I told her that I was pretty clear-sighted about all this, or at least trying to be -- wasn't expecting a good outcome, just trying to determine the kind of bad outcome and get a handle on the timing.

Both of which are impossible, of course.

I also told her that it was good to have impressions confirmed.  Which is true.  Back in the Partners days they'd send me those cheery messages ("Dad looked great!") and I'd be left wondering if I was hallucinating his symptoms.  I didn't think so, but...  Now there's somebody else seeing the same things, and that's helpful.

Precipitous -- new word for the Alzheimer's vocabulary list.

And down we go.

Cats Read of the Civil War

A professional colleague asked me yesterday if my father had reached a plateau after the surgery.  Unfortunately not.  He doesn't seem to do that. 

Excerpts from my update e-mail to M:

...Progression of symptoms: D, the Partners aide, reports she found him using his finger to trace out my phone number on the piece of paper where it's written out for him.  Then he raised the paper to his ear and tried to telephone me on it.

Asked repeatedly who E was.  Said she must be an important person when he found her name written on a coffee cup (the word was "espresso")...

Continues to confuse my new cats with children.  Asked after them, then asked if they were reading the book on the Civil War that he lent me last week...

Obsessive behavior -- he wanted to show me his address book where all his visitors' names are written out.  He spent the next half hour reading all the calendar entries aloud -- mostly in gibberish because he couldn't make out the words.  Several attempts to distract and redirect him (for example, toward the baseball game) failed.  He then went to the living room to find books for me to borrow and the behavior continued -- he pulled 10 or 15 in sequence, tried to read their titles aloud, seemed unable to stop himself although I told him several times he'd made good selections and I'd take this particular set of them tonight...

A certain lack of affect when I left for the night.  He's usually oriented and emotional at that point but in this case the agitation and obsession seemed to carry through...

He also complained about a new set of flu-like symptoms.

So it continues.

Yesterday afternoon I stopped by M's office and signed the (finally!) completed M-11q.  Today she'll send it off to Medicaid.  Then she'll visit him and we'll see what she has to report.

More to follow, I suppose.

Ragged

Every now and then I find myself wondering why I feel the way I do -- in this case, ragged and burned out.  That's why I keep notes and write blogs.  I just took a look back over the past six or seven weeks' worth of entries and suddenly it makes sense.  From the time I got him to Dr. R, then to Dr. L, then the surgery and the aftermath -- the whole thing has gone through my life (and his) like an enormous bolus.  Or to be less graphic, like a truck -- one of the many trucks that run you over when you're dealing with Alzheimer's, which is very much like lying in the middle of a highway, adjusting your position to make yourself more comfortable and making plans while waiting for the next in a series of trucks to come along and flatten you.

The interesting thing is that at the beginning of the process I could have predicted all the stages -- the frustrations of dealing with the healthcare establishment, the focus on details, the likelihood of a worst-case outcome (impaired capacity but no change in the timeline), getting the outcome and making all the arrangements to deal with it, the buildup of fatigue and ill temper.  And it all happened exactly the way I expected.  And every new stage was a complete surprise.  You wind up in a rage against the providers and the system the way you knew you would -- and it's all unexpected and fresh.  How does that work?  Maybe by getting so boiled in your life that you lose all your external points of reference, even to the more-aware self that you were a couple of weeks ago...

In spite of all that we're making progress.  M, as expected, is a bulldog.  She's visited Dr. R twice, and forced him to produce an entirely new M11q (the old one had expired while we were looking for the original).  She wrote an aggressive rider arguing for 24-hour coverage.  Tomorrow I'll stop by her office and sign it and it'll go off to Medicaid.  She tells me we'll have our answer in 30 days at the most, "but I think it'll be much sooner than that."

I considered trying to write something about Father's Day but what would be the point?  After our early celebration last week, my father stayed aware of it for a few more days.  We had long phone calls where he told me how much the gifts had meant to him and how much I'd meant to him.  This is both good and not good.  It's good because he's sincere, and it's good because he's landed in a warm, benign emotional state.  As his rational faculties went by the boards, he sailed more and more into this sea of love -- the awareness that everything and everyone is connected and all's well.  I still don't know how I feel about that, because I don't know if it's authentic (a buried self that emerged at the end) or a symptom -- something that happens when frontal lobe damage wipes out the ability to plan and discriminate.  It really doesn't matter.  The Zen viewpoint is that there isn't an authentic self -- there's just the way things are at any given moment.  On Friday, there was the sea of love.  On Sunday, when I thought I'd do the official holiday call and have my wife get on the phone, it wasn't the sea of love -- it was a long, tenacious paranoid episode.  E had left an envelope on the table with money in it and a note and he didn't know what it was or what it was doing there.  My guess is it was a set of petty cash receipts, but I'll find out more tomorrow.  I decided to let the holiday business slide and let him talk out his theories about the envelope and try to ease him toward a soft landing.

Authentic self or no self, doesn't matter.  Ragged or not, doesn't matter.  You try to work with what's in front of you and shift your position and improve the situation to the extent possible while you wait for the next truck to come along.

An Intelligent Man

Received the assessment from M and have been reviewing it.  Initial verdict: She's on target.  She gets it.  Excerpts:

Mr. A presents as a warm, engaging person who loves company and attention.  After a few minutes, it became apparent that he has severe cognitive impairment.  When asked a direct question such as birth date or day of the week, he was unable to give correct answers.  He easily lost track of his thoughts and his conversation was tangential...

His thought quality and content were incoherent and evidenced memory impairment.  He was attentive but rambled in non sequiturs...

Mr. A was not oriented to time, place and person.

Abstract reasoning, organization skills, problem-solving, planning and reasoning all... seem to be severely impaired.

It is evident that this is an intelligent man who is suffering a rapid decline in cognitive function.

Yes, that's the story.

The last line really struck me.  Nobody else we've dealt with in the past couple of years has picked up on his intelligence.  Frankly, I lose sight of it myself, which disturbs me, but there's a price for living in the present.  Good that she noticed.  I'll have to remind myself.  Maybe it doesn't make a difference in how I deal with him but then again maybe it does.  The things you're thinking at any given moment affect your tone, and your tone affects him.  I don't want to dwell on the way he used to be but on the other hand if you bury it, then you treat him like a patient and he slides a little more.  Treat him like a person and he might get a little calmer and a little more stable at whatever point in the decline.  You're not going to prevent the decline but you can make it slightly more comfortable...

A plan of action follows.  New aides with training in dementia, home safety inspection, a geriatrician to review the case... I was hoping that someone would start to build a care establishment and it seems like that might happen.

I like the tone.  I like the directness.  Can use more of that.

In a separate e-mail exchange she told me it'll likely be three or four weeks before we can get the CASA aides in place.  That'll be the end of E.  E and I had a very friendly, very warm phone conversation in which we covered a lot of things and she refused to break her price.  You're history, I said to myself...

Last night's visit was relatively tame -- or maybe I'm just getting used to the new cognitive realities.  Since I won't be able to visit on Sunday, I gave him some early Father's Day presents.  There was a Sports Illustrated book with a lot of photographs.  He can't read the book and can't really take in the photographs.  But I've always given him books for every occasion and it'd be a bad signal if I stopped.  I'll keep it going until he doesn't know what a book is, or maybe a little longer than that.  And I gave him a watch.  His old digital one had stopped working and he can't follow the numbers, so I switched to analog.  He's a little better with that, though not perfect.  But he was ecstatic about it.  Said that now he wouldn't have to keep asking people the time -- "I can go back to being an adult." 

The goal, I guess, is to keep him feeling that way as long as possible.

Cats and Their Teachers

Have been distracted the past few days, helping my new cats settle in.  They're cheerful and adaptable and were only mildly agitated on their first full day in the household when the call came in about the status of the community trust and I started yelling at the elderlawyer -- something to the effect that "I need you to produce results, not leave voicemail messages."  You may have noticed that my Buddhist thing is somewhat compromised as of the moment.  Must regroup.

My father continues to be extremely interested in my cats.  When I called him Monday night he said, "They're really wonderful for people like us, who don't have small children around the house."

Then he said, "And it's really wonderful when you can start going to school and meeting with their teachers."

Then he said, "I used to do that with Alan and look how it's lasted.  We have a wonderful relationship even now.  I rely on him for everything."

And there you have it -- Alzheimer's in a nutshell.  Three quick sentences -- hardly a breath in between them -- and you've gone from introspective philosophy, to Mars, to Jupiter and Beyond the Infinite.

You hold your breath and stay very alert, and try to surf the connections and see where everything lands.

I'm in New York as usual on a Wednesday and in a little while I'll head uptown and do more of that.