Dementia Nights

A Flurry of Stuff, Some of it Good

Had meant to post a few updates over the weekend but got floored by a massive headcold - worst I've had in years - that turned into a low-order bronchial infection.  I think I picked it up from my father during the last visit - he's becoming a germ incubator, the way small children are supposed to be.  And then it was set off in the usual way, as a result of my yelling at E.  Some patterns are hard to break.

Nevertheless... stuff is happening, and some of it is even good.  First good item - Dr. B called my father Friday morning, the day after the gerontology evaluation, and asked him to come back in so they could check him for a possible infection (see "germ incubator," above).  There was something in the blood work that they didn't like.  I'm extremely pleased and continue to be impressed - I don't think we've ever had this degree of medical attention, and it's a nice change.  As it happened he didn't have an infection (so maybe I have to blame somebody else for the headcold), so they'll continue with the current program - a nursing visit to check out the ear blockage, a dental cleaning, a follow-up with Dr. B in a couple of months...

Additional good news - M tells me that we may have the Medicaid situation resolved as soon as tomorrow.  CASA arranged another home assessment this morning.  I had to get on the phone and answer a couple of financial questions.  Apart from that I'm trying to stay clear of details, and I keep track of progress indirectly.  As in, M asks me yesterday why we withdrew the previous application for Medicaid and I say, "What previous application for Medicaid?"  She goes off to find out what that's about (is it a stray bit of data about some other family member?  My aunt, who died of Alzheimer's 13 years ago?  I have no idea... )  At this stage I'm going on the basis that if I don't know what's behind the questions, thinking about the process won't hurt nearly so much...

Other developments: less than good, but par.  The dialogue with E on Friday follows the usual pattern.  There was some background confusion.  Dr. B issued an antibiotic prescription as a precaution - just in case my father developed signs of infection over the weekend.  But E didn't know it was a precaution when she told me she was too busy to fill it and she'd pick it up tomorrow.  Dr. B doesn't give patient care instructions to aides because as a group they're not considered reliable (can't argue with that).  And I didn't know it was a precaution when I told E that she'd better damn well get it filled right away (since Dr. B didn't call me 'til a few minutes later).  The discussion continued in its usual way:

Me: "You need to get it filled right away and bring it back and give him the first dose.  And then I need you to make sure D and your sister know what the medication schedule is."

E: "You gotta tell them that.  I'm not gonna tell them that.  They don't listen to me.:

Me: "Look, you have the instruction there and all you have to do is make sure they see them."

E: "You know, I'm the only one who's dealing with the cat litter.  The others aren't doing nothing with the cat litter.  I"m the only one."

Me: "Why are we talking about cat litter?  We're talking about medication.  You need to get him the medication and since you're there and I'm not, I'm asking you to make sure they have the instructions since you have them and I don't."

E: "You gotta be the boss.  You gotta tell them what to do."

Me: (losing it) "OK, so follow your own argument.  I'm the boss.  And I'm telling you to do something.  And when I tell you to do something, do it.  Don't tell me why you can't do it.  I'm the boss and I'm telling you, fill the prescription now and give them the instructions.  That's the boss talking.  Got it?"

I hung up.  And then had to call back a few minutes later to tell her that there was no need to fill the prescription after all.  After which my sinuses walked off the job, followed closely by my bronchia...

On reflection I'm not sure anybody comes off all that well in this particular story.

Somewhere in the cold-medicated haze of the weekend I sent a sharp e-mail to the law firm.  They had confirmed that the Medicaid ceiling is now $13,000, not the $4,000 I'd been struggling with.  "And when, exactly, were you going to let me know that."  In their reply they pointed out that it had been in their monthly newsletter.  My guess is that must have been the April issue - the only one I didn't keep.  I'll send them another message, once I decide how sheepish to be.  Partly sheepish, I think.  A newsletter is all well and good.  But after that I sent them messages explaining exactly how much trouble I was having working with the $4,000 ceiling, and nobody bothered to point out...

No, don't go there.  Or more accurately, don't go there again...

Finally, there's my father.  It's easy to lose sight of him in the flurry of bureaucracy and self-pity, but at the end of the day, there he is.  There he is and he's doing steadily worse.  He's finding all the new players and all the new appointments hard to keep track of and hard to work with.  He likes Dr. B and her team but would like more breaks in the schedule, and doesn't know what to make of the visitors who keep showing up and rolling through the same home assessment, over and over. 

He gets increasingly agitated and distressed.  On Saturday I call him and tell him I'll see him Wednesday and he says that's great, "if I live that long."  On Sunday he calls me - actually D calls me, because my father is suddenly not just puzzled but upset that he can't get through to me by tracing my phone number with his finger - he calls me and he's worried because he hasn't heard from me in 12 days, "since I got out of the hospital."  That might mean, since his Thursday visit, or it might mean, since the surgery in May.  In either case, he can't remember any of the conversations we've had since. 

"Even since I got back from the hospital I feel like I can't keep track of anything and I'm going crazy," he says.

There's still too much awareness - just enough to make all this really painful.

But I'm trying to stay focused on the positives.  First a care manager, then a gerontologist, and maybe in a day or so a Medicaid solution.  Progress is relative in this situation but any and all of the above would definitely count. 

After the Fall

He was considerably worse in the aftermath of the fall.  Last night's visit: He raved for about an hour on a variety of topics, had a moderately severe choking episode, then - and this is a first - fell solidly asleep.  I left without saying goodbye, which I've never done, because I didn't want to wake him.

The circumstances of the fall - he tried to sit in a relatively lightweight chair and pitched backwards, so that he wound up on the floor, still in a seated position, on his back with his arms and legs elevated.  The blow to the head was probably less severe than it would have been if he'd been standing.  Given the state of his cognition I"m left wondering what's cause and what's effect - did he strike his head, or have some other kind of fall-related stress, and lose capacity?  Or did he have some kind of cortical episode that led to the fall?  Hard to say.

The rest of the news is good, very good in fact.  The visit to the gerontologist couldn't have gone better.  He's extremely happy about the experience and - though I try to stay guarded about these things, so am I.  Feels like we've finally landed someplace where they know how to handle a complete elderly demented person, as opposed to just putting drugs into his organs and disease states.  I think that as of today we've replaced Dr. R with Dr. B as his primary care physician.

The practice isn't (as I was expecting) office-based - it's part of a big geriatric care center attached to Mt. Sinai.  Dr. B is incisive.  Met with me and took a long history.  On the topic of his surgery: "I would never have ordered it."  On his off-topic loquaciousness, to her medical student: "What's the term for what he's doing?  He's perseverating!" (New word for my vocabulary list).  On the matter of drug treatment, which we discussed at length: "I don't recommend it."  That turned largely on my statement that I don't think he's going to recover any capacity and I don't want to put him through side effects and other forms of distress just to try - I want him comfortable but I don't think more years of life will do him any good.  She said she thought he was too far gone for drugs to have any real effect on cognition, and that the toxicity wouldn't be worth it.

They spoke with him at length and administered the Mini-Mental State Exam.  The problems were, of course, obvious.  Interestingly, he did well with a shape-drawing exercise, and they feel he may benefit from some kind of craft work (which they offer) - even if he doesn't succeed in making anything, working with his hands seems to reduce his anxiety.

I noticed while he was drawing that he held the pen in his right hand.  That's noteworthy because at the age of 8, in the wake of polio, he had to retrain himself to write with his left hand, and to my knowledge he's always been left-handed.  Their take - acquired skills are going away, and he's reverting to basics. 

A couple of related points, even more arresting: I mentioned (as I'd mentioned here recently) that his cognitive problems were in evidence long before his memory problems.  They think that's because he worked as a reporter and editor.  Every day, he had to remember things and relate them to each other, and so those capacities were fully exercised and are slower to deteriorate.  "An accountant would retain the ability to work with numbers," Dr. B said.

And they have a similar take on his personality.  As you know if you've been reading this, I've been wondering whether his cheer and his affection and his eagerness to serve others are aspects of a genuine core personality emerging at the end, or just a random effect of his overall collapse (some elements of personality vanish and others stay, but without rhyme or reason).  They vote for core, not randomness.  "You find out that people become what they really are, so if they always held a lot of anger, that comes out, and if they were basically cheerful, that comes out."  It seems he was cheerful.  That leaves me with a few things to rethink - about him and my mother and their relationship and such.  More on that at some future point.

Speaking of rethinking - there's the matter of Dr. R.  I could, if I wanted to, turn on him and condemn him out of hand.  I'm not going to do that because - at the risk of repeating - he did many things well.  Keeping my mother alive through more than 20 years of breast cancer is high on the list.  On the other hand, what this makes clear - as I'd more than suspected - is that the medical establishment has no idea how to handle Alzheimer's.  On the one hand, they put him through four hours of general for the squamous cell carcinoma, and on the other hand, they didn't - 'til today - react to his complaints about an earache.  Dr. B prescribed an ear wash and scheduled a follow-up visit.  Nor did they check his teeth - Dr. B did and found a horrific plaque buildup, enough that he'd be at risk if any broke off and he inhaled it.  She recommended a dental cleaning and M is going to set it up.  Dr. B prescribed Vitamin D to slow the rate of bone loss.  It's clearly a whole different level of management - broader and less intense and much more useful and effective.  I'm still willing to revere Dr. R for the things he did - and to pull my father out of his practice because of the things he can't or won't do.  He has all the talents and the limitations of traditional medicine.  I live in a morally equivocal universe (after the fall?) where I try to recognize that two contradictory things can be true at once and most people are a mix of good and bad stuff.  I thank Dr. R for the good stuff (he got me to my cardiologist and forced the issue on my getting an angiogram that turned up a major blockage - can I add that to the good stuff list?) and am disappointed at what he didn't do (no traditional doctor would have acted differently) and now we'll move on. 

Maybe at some future point the whole-patient approach will spread from gerontology to other practices and we'll all be better off.

In the meantime, if you're trying to manage an Alzheimer's patient, get to a gerontologist.  That's my tip of the day.

My father called late in the day and couldn't get over how wonderful the visit had been - the best experience he'd ever had in a medical setting, they talked to him and really talked but they were really working, too.  Can I tell Dr. R all that?  Yes, of course.  We'll maintain the fiction.  And I may in fact tell Dr. R and thank him for everything he's done.  I mean that without irony.

After we sent my father home, I stayed on and met with one of the program's social workers.  Like Dr. B, she was helpful on several counts.  She offered help with the Medicaid application.  I think (I hope) we're too far down the path with CASA for that to be necessary, but if it kicks again, I'll take her up on that.  I told her the whole sorry history of our 14-month (and counting) application process and she said, "I don't know if you'll want to hear this, but it sounds like you've found every weakness in our system.  Most people find only one, but you've hit all of them."  Oh, thank you.  I said, "I guess one of the little ball bearings has to fall all the way to the right side of the bell curve, and that would be me."  I'll take it as an honor, at some future point, when it's all over.

We talked a bit (as I had with Dr. B) about the home care situation.  Their feeling is - as my feeling has been - that he's better off at home as long as we can keep him there.  As far as his safety is concerned, the important factor is the aide coverage, not the location - and he might be at more risk in a nursing home where the coverage might not be as thorough.  If we do opt for a nursing home at some future point, the social worker recommends we find one close to me in DC, not in New York. "The way you guarantee quality of care is by being on scene.  Don't even consider one in New York."  Fine by me - that simplifies one of my hypotheticals.

A stray issue - as you know, I've been jumping through hoops trying to pay my father's (enormous) bills while keeping his checking account balance under the $4,000 Medicaid limit.  The social worker gave me a printout of an e-mail thread in which a nonprofit eldercare agency reports that in late May - and retroactive to April 1 - New York State Medicaid raised the limit for single individuals from approximately $4,000 to just over $13,000 - more than triple the amount.  If true, that would make oh, just a slight difference in my ability to manage the finances.  I sent off an e-mail - neutral in tone, mind you - to my elderlawyers, asking them to verify this.  Just among us - if it turns out to be true, and they didn't tell me, I'm going to be... shall we say, cross?  I've been after them every other week about the problems I'm having with the $4,000 ceiling, so it's not like they weren't aware I was in distress.  We'll test the rest of the awareness.

But right at this moment I'm not going to get caught up in that because on the whole, it's been a pretty good day.  Feels like the professionals are arriving.  I need to keep this in context, of course.  There was the fall and there are his new symptoms and there was Dr. B's comment that "right now he recognizes you.  But in a few months he's not going to."  But I know all that.  This is heading where it's heading and I know that. 

On the way, though, you can have breakthroughs.  And I think this was one of them. 

The System Works, More or Less

From time to time - as you sell off more assets and write more checks, which is what I was doing yesterday morning - you find yourself wondering what you're getting in return.  A possible answer: You're getting people who know what to do, and do it.  Got a call from D just before noon - my father had fallen and hit his head.  Her supervision told her to call 911 and she did.  I talked to my father and to the ambulance crew, who decided to transport him to the Mt. Sinai ER for evaluation.  The ER checked him out, ran a CT scan, signed him off and sent him home - about 8 hours later, but that beats some of the alternatives.

Reaction: mostly relief.  This is the first time we've had one of these minor crises under 24-hour coverage.  That means it's the first time we've had one of these crises that I didn't have a full-blown adrenaline rush.  The people on scene did the right things and kept me posted.  When I spoke to him he sounded OK (by current standards, at least).  I decided not to jump on a train unless there was reason to - and it turned out there wasn't.  So I stayed at my desk and managed to get some work done and kept in contact by phone.

It wasn't universally smooth.  D wasn't in the room with him when he fell.  This illustrates why she needs to be.  She didn't know where the red folder was - the one with the medical history and insurance information in it.  She notified her own supervisor but not M.  M was irritated about this and thinks I should have told the aides she's now the case manager.  I agree, but note for the record that M could have told them that, too.  I had to spend a fair amount of time on the phone playing Mission Control and updating E and her sister so they'd know where to find my father (he didn't get home 'til after the evening change of shift and I had to steer E's sister to the apartment and tell her to wait there).  That's probably a better job for M, or for the aides to handle on their own.  Easier, of course, at some future point when there's only one agency and M is the person who hired them.  It's a good goal.

Nevertheless - the situation got handled and at the end of the day everyone was where he or she was supposed to be.

When I called my father again last night he was animated and completely incoherent - I still don't know what happened.  He had a hard time during the long ER wait - went off on D pretty spectacularly, refused an offer of food and then got furious with the hospital for not feeding him.  But no physical damage was done and that's what matters.

I thought about canceling his gerontologist appointment but in the clear light of the next morning decided to go ahead with it.  Better to get him a comprehensive checkout than to wait weeks or months for a new appointment.  And once I told him that Dr. R had authorized the visit he was all eager to go.  Might as well take advantage.  Carpe diem (that means "seize the carp," right?) as they say.

Am New York-bound now and we'll see how the gerontology visit goes.   

 

And Around and Around and Around...

And just as I was finishing the last entry I got a late e-mail from M.  She reports that

1) It will take at least a month for us to get into the CASA Medicaid system.

2) Since we've decided not to go with Guild Net, CASA requires an entirely new home care assessment.  Someone else needs to visit and start the process from scratch. (Note: I think this will be the fourth home care assessment, but I'm not sure.  I'm losing track).

3) CASA won't let us pick our own agency.  They'll assign one based on their estimate of needs.

4) In spite of this, M is going to call Premier.

5) CASA will assign its own caseworker who, I guess, will coordinate with my caseworker (that would be M).

I replied with a few questions:

1) If CASA isn't going to accept Guild Net's assessment, why did they send us a Guild Net representative in the first place?  Or did the Guild Net assessment apply only to Guild Net?

2) If CASA is going to pick its own agency, why are we contacting Premier?  If we used them, does that mean that we'd be opting out of Medicaid and deciding to pay out of pocket?

3) When will this end?

Actually, I didn't ask question 3.  At least, not aloud.  Maybe I will at some point.  Or maybe not.  I think I know what the answer will be:

1) This will never end.  You're going to spend all eternity cycling through a procession of home health care assessments and filling new sets of application paperwork.

2) Your father will outlive you.  His mind will be gone but he'll be cheerful and people will like him.  And you'll be dead.

Putting that aside - if the home care situation is never going to get resolved, is there a point where it makes more sense to give up on it and look for a facility?  My father is probably borderline-in-need of nursing home care right now.  The advantages of home care had to do with comfort and cost.  But if comfort becomes a more neutral factor and costs are the same or even higher at home, why keep him at home?

I'll have to think about that.  In the meantime I suppose I'll pour more gasoline on the asset bonfire and get comfortable.  'Cause it looks like we're gonna be sitting here in the confusion for a while.

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.

Send Out the Clowns

Shira told me last week, a bit harshly, that I should have been saying positive things about DOROT.  In the course of this post I will, though probably not in a way she'll like.

Immediate background: a difficult 40 minutes on the phone with my father last night.  He's manic and energized about all the eldercare people who've been trooping through his apartment -- the aides, M, and the new player from Guild Net, a Medicaid contract agency, who showed up on short notice last Thursday to do the home care assessment for CASA. 

"They've got nothing," he says.  "They're not worth anything.  We should get rid of all of them.  They're all clowns."

What he'd rather do is have me replace them with the DOROT volunteers.  There are two sets of them -- Shira's sister, a medical student, who visits him once a week, and a rotating group of high school students who visit when they can. 

DOROT is an all-volunteer Jewish charity that provides home visiting and other eldercare services.  I know about them because back in the day -- about 10 or 15 years ago -- my parents were both DOROT volunteers.  This time last year, when my father's main problem was social isolation (as opposed to catastrophic cognitive collapse), it was natural for me to think of them.  I mentioned them to J, the very capable Partners social worker, who reached out to them and made arrangements.

It's clear that he gets a lot out of the time he spends with the volunteers.  Not surprising -- these are intelligent, well-educated people who treat him like a capable human being, which is more than can be said for some of the members of the formal home care establishment.  (Side note: if there are similar programs in your area, you might want to look into them.  Additional side note: if you do, you might want to do a better job of keeping in touch with them than I've done.  DOROT doesn't have a lot of staff.  And the visits tend to run smoothly.  For both of those reasons, I'm not in much contact with them and they're not in much contact with the rest the caregivers.  The good news is that DOROT functions.  The bad news is that it functions as a split-off part of the caregiving package.  This is my fault but also DOROT's.  When things run smoothly I'm apt to leave them alone -- I have enough else to look after.  On the other hand, DOROT would do me a favor if it gave me an occasional update.  My father isn't just a lonely old man, he's a lonely old man with a fatal illness, and the things they see in the course of his decline might be pertinent.  But again, this kind of reporting probably requires more personnel than they actually have).

Putting all that aside -- the immediate problem is that now (as opposed to this time last year) my father needs both the intelligent, capable DOROT volunteers and the not-always-welcome professional caregivers. Which makes it a little challenging that he's decided it's an either/or.  Of course, the main reason he's decided that, and the main reason he's exercised about firing the caregivers, has to do with my own cleverness, which is now blowing up in my face.  You'll recall that to persuade him to accept M and go on the next series of doctors' visits, I hit on the idea of telling him that we're engaged in all this activity because Dr. R has enlisted us in a project -- to help evaluate the doctors and other providers and then report back to him.  This had the value of convincing him to (for example) go see the head-and-neck surgeon and get the two-month-old bandages taken off his head.  It has the disadvantage that -- since he thinks that he and I and Dr. R are in business together -- and that all these people are working for us -- he wants to give advice and counsel.

"What you can tell Dr. R is that if he works with these [DOROT] people, he'd have something, because they're young and they're going somewhere and they have something.  Not like these clowns."

And then he starts reciting my phone number again.  Which serves as a reminder that in addition to DOROT we have to have M, not to mention the staff of people who know how to bathe him and dress him and perform the Heimlich maneuver, whether he likes it or not.

Wednesday night he wants to go over the staffing situation and help plan Dr. R's business.  I'm trying to gather strength -- could be a long night.

Meanwhile, the home care assessment...  I wasn't able to be there so M covered it.  She reports that it went on for two hours, was thorough, and that the Guild Net representative concluded that he needs 24-hour care.  Or possibly two 12-hour shifts (different and more expensive because the night aide can't sleep).  But she doesn't think he needs night coverage because she can't see a need.  How she concludes this on a first, late-morning visit is beyond me.  Fortunately M nudged E, who mentions that he's up all night and is almost constantly agitated and disoriented.  So off goes Guild Net person to file the paperwork.  Except that it turns out that the paperwork requires we work with Guild Net, which is a managed care agency and demands that we replace all the doctors.  At which point M advises that we cut them loose and tell them to send the application back to CASA, with instructions that it be forwarded to... deep breath... Partners in Care.  Because it seems -- don't ask me how this works because I don't know -- that although Partners wasn't able to accept the case, it is in fact able to staff the case as long as the case is formally held at CASA and not at Partners.

So I agree to go with Partners.  At which point the lawyer chimes in and says she can't endorse Partners because they've had many problems with them.  To which I reply -- not diplomatically -- that I know there have been problems with Partners because most of them have been mine.  And if you have another agency to recommend, please do it immediately.  Because if you don't, I'm going with Partners because M can supervise them and because, more to the point, I've got a six-day window to file the application for August 1st and if I don't, I'm going to have to carry private-pay aides through August at their going rate of eight thousand dollars a month.  So give me an alternative solution or get out of the way.

Didn't hear back from them so I'm going with Partners.  Better the devil you know...

By the way, have you noticed I haven't mentioned Zen practice recently.  I promise I will, as soon as I'm done rampaging through the landscape and blowing people up.

Clowns.

Or has somebody already mentioned that? 

Talisman

He's now fixated on the piece of paper with my phone number on it.  I'm not sure if he's still trying to use it as a telephone but it plays a central role in our evening phone conversations.  I call him and he says, "What I really want to hear is what's going on in your business, because I think it's really strong.  It's..." 

Or, "[Distorted version of the name] M was here today and she told me she wanted to work with us and she left me with this..." 

Or, "You've got to be careful with the weather because what they're saying about it is..."

And then he says, "Alan... Chell... Phone... Up... Nine... Stroke... Seven... Five... Eight-squared... there's that thing with the curve on it...."

The number itself is increasingly mangled.  A week or so ago it was still possible to make out the original -- the one he'd meant to read -- but not anymore.  Now he repeats or shears off into other number sequences.  Increasingly, what he vocalizes isn't the number itself but rather a description of the way you'd draw it ("up", "stroke," "the thing with the curve...")  Abstract information is giving way to concrete information.  But given his visual processing problems, that's not reliable either and this phase probably won't last long.

And on the other hand -- it's obvious that the phone number means much more than a phone number to him.  It's his sole means of reaching out to me.  So it stands for every element of connection.  Connection to me and connection in general.  He can't deal with the abstraction of individual numbers but the piece of paper is as abstract as things get -- it's a symbol for his ties to me and a symbol for things that really matter.  It stands for me and my business (which he lives for) and the weather (which frightens him and which he thinks might keep me from visiting) and the things that M wants to tell him...  And it's a talisman that, if you hold it and recite the numbers, makes the connections happen and keeps the things that matter going in the right direction.

M has scheduled the first appointment with the gerontologist.  She visited my father last week and seemed fascinated by his communication problems.  She wants to give the gerontologist all the details of the aphasia in case it indicates something that's treatable.  I admire the impulse but need to find a nice way to tell her that from my perspective, aphasia is so 2002.  We're way beyond that now -- on much stranger territory.

Back to the regular schedule this week -- will head to New York tomorrow and try to see where we stand.

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...