Dementia Nights

Malfunctions

On last night's visit his cognition was pretty much where I left it.  More on this below.

A new set of issues related to spatial reasoning - I noticed that if you speak to him while standing alongside him or behind him, he can't locate you.  Becomes confused and can't tell who's talking or where the sound is coming from.  Similarly, when he tries to sit in a chair he approaches it tentatively, from the side, and can't seem to land squarely in the center of the seat - he's off to the right or the left.  At least two of his most recent falls have happened while he's in or near a chair.  My first thought was that the problems were related to his gait and his balance, but now I'm wondering if there isn't an information processing problem, too.  Another one, that is to say.

On the home care front... the very good night attendant took me aside and told me that she and the day attendant decided to move the petty cash from the foyer drawer to the second bedroom, because "the woman who was here on the weekend was using it to buy food he doesn't eat."  In other words, buying food for herself, or her friends and family, or whatever.  I thanked the very good night attendant, then passed the update along to M so she can take it up with the agency.  If the story holdsup, this will be the second theft in three months - to be filed alongside the other four or five major caregiving failures since we brought the Medicaid crew on board.  I want to hear what the agency has to say.  The city just sent me a circular about the new, upgraded home health agency complaint hotline and part of me is dying to use it.

Spent part of the evening on minor maintenance.  Lightbulbs in the pantry have been out for two or three weeks so I changed them (idle question - how many home health attendants does it take to change a...? Never mind...)  Took down the carbon monoxide alarm, which was beeping to announce that it was about to die (idle question - how long had that been going on?  When I asked, day attendant said, "Yeah, there's a buzzing coming from somewhere" but she hadn't figured out where and wasn't going to put any effort into it).  Noticed that the bedroom doorknob has fallen off - later e-mailed M, asking her to ask the super to fix it (idle question - if I didn't visit every week, would anybody notice this stuff?  Would anybody do anything about it?)

Otherwise, things were quiet.  Overall, they're getting quieter.  Conversations with my father are continually becoming less detailed, and there are longer silences, because he can't handle information in volume.  From time to time I'm brought up short because I realize how many things - how many of his attributes - have disappeared in the past few months, without my really noticing.  Remember when I used to talk about the "sea of love" - the big swath of emotion he'd fallen into, where he'd go on about how much he cared for people, and how much it meant to him that he was being taken care of?  That doesn't happen anymore.  It was a stage on the way down from reasoning - for a while he got to live nicely in a world made simple by the loss of detail - but now he can't operate at that level of abstraction, and his affect is reduced.  He's shifting more into a survival mode - bare functioning.

About his cognition - over the summer, when he visited Dr. B for the first time, she administered the Mini Mental State Exam.  If you're an Alzheimer's caregiver you're probably familiar with it, but if not - it's a standard diagnostic used to detect and rate the level of dementia.  The patient has to answer questions (what day of the week is it?), remember words in a series, draw geometric figures and clock faces... You can see the whole exam at the link.

In the general welter of things, I forgot to ask about his score.  I'm usually thorough about these things but I guess I lost track of it - and also, I was decently confident that Dr. B was factoring it in, and that's what mattered to me.  But the question came up again when I met with D, the Maryland care manager, who asked about his score so that she can help us decide what kind of facility he needs, and what level of care.  M didn't have Dr. B's score handy, so she asked for it, and in the meantime administered a new one.

The scoring works out like this.  The MMSE gives results on a scale from 1 to 30, with 30 being full cognitive functioning.  Anything under 10 is considered severe dementia.

Last July, when Dr. B tested my father, he came out at 6.  When M administered the test a couple of weeks ago, his score was lower - "and that was with a lot of prompting," she said.

I found out about the scores last week.  It was one of those moments that was completely predictable but also breathtaking.  Not a surprise, of course - as long ago as May I'd pegged him at Stage 6and the MMSE scores just confirm that (detail note - urinary and fecal incontinence would put him in Stage 6d or 6e).  But the objective confirmation - much as you want it and need it - is a bit stunning.  All at once you realize where you are and what you have to do - and (at the risk of repeating) the fact that you have no choice.

The practical value of this will be that it determines the question of residential care facility vs. nursing home.  D thinks residential care is a possibility.  I don't.  But I don't know enough to judge. 

I'll take the scoresheets and go find out.

Reluctance

You'll notice that the pace of the blog has slowed down.  You'll notice also that it's been two weeks since I went to see the Maryland care manager.  And since then I've done... nothing.  Nothing at all.  Haven't looked at a nursing home.  Haven't even looked at a nursing home Website.

Of course I'm full of excuses - lots of documents to pull together, lots of issues in New York to keep track of.  Plus work and the beginnings of tax preparation and any number of other things.  And traffic was terrible during the inauguration weekend...  Now of course, you can see through all that, can't you?  The sad (but predictable) truth is that I just don't want to take this on.  The whole scope of the engagement - from the large things (what level of care does he need?) to small personal griefs (do I really have to part ways with his cats?) - it's all too much.

Except that it's not.

Note to self: Chop wood.  Carry water.  Put ass in gear.

Expect more developments after I've done that.

Home Care: The New York Times Gets It

All I can say to this New York Times editorial is, amen.

And if anyone wants to use this blog to support the argument, that's fine with me.

Have a look at the comments, too.  The usual experience of kicking the lid off this particular nightmare. 

Obviously, wages and working conditions for home care workers are just one part of the problem - training would also be nice, and beyond that, there's the fact that we don't actually have a healthcare system.  But first things first - any reform will help, and this one is as good as any other. 

If you've thought of getting into advocacy (I know I have), this might be a worthwhile cause.

Pecked to Death by (Bureaucratic, Cognitive) Ducks

There's the big cognitive decline and then there's everything else.  Workload over the past week has included...

...two bills from the agency for overdue Medicaid surplus payments, followed by a letter from their collection department.  Three times now I've sent them letters explaining that the surplus is being paid into the community trust.  Each letter is accompanied by copies of the community trust joinder agreement, canceled check images and the trust's financial statements reflecting the payments.  No response yet.  We'll see.

...a bill from my old friends at Partners, dated August 29th, for home health aide services.  That explains why I couldn't find it when I was submitting invoices to the elderlawyers for Medicaid reimbursement - they'd never issued it.  Except that - I'm pretty sure of this - they included it in the roll-up they sent to their collection agency last fall.  Surely you remember that exciting episode - the one that happened when the elderlawyers told me, mistakenly, that I could be reimbursed for payments I hadn't actually made.  Or, more accurately, Partners could be reimbursed.  Five figures later, accounts were settled and now I'm waiting for Medicaid to tell me if I'm getting anything back.  The amount in question may or may not have included the August 29th invoice.  I thought about writing another letter tracing out the whole sorry collection history - then thought better of it and decided to pay Partners the (more than) two (hundred) dollars.  Maybe not the best financial management but I don't have time, I'm too busy...

...trying to pull together the several dozen documents I need for the conference with the Maryland elderlawyer.  The most important is a copy of the irrevocable trust agreement - I can't break it unless I can account for it.  Naturally, out of the dozens, it's the one I can't find.  I'll have to requisition a copy, either from the New York elderlawyers or the brokerage.  Come to think of it, the brokerage probably has the original on file...

And of course no progress to speak of on the nursing home front.  I've got two travel days in front of me, but after that...

Meanwhile, my father's cognitive drift continues.  On Friday there was a long, meandering phone conversation.  Since then the conversations have been shorter, but the content has been pretty much the same.  He wants to know how my business is doing, he wants to know when I'm visiting next, he wants me to know how much he enjoys the visits from Alan.  I should meet Alan - we have so much in common and it could help both our businesses if we got together.  He's saving copies of The New York Times for Alan and he could do that for me, too.

My separation from Alan is now more or less permanent.  It takes interesting forms.  When I visit, he's upset that Alan is missing.  The Alan in question is usually a child.  When I phone him, Alan is the person who visits, and I'm someone else.  The common thread is this: Alan is always the man who isn't there.  Or the child who isn't there.  As for me, I'm sometimes an adult contemporary and sometimes just a person without attributes. 

I could elaborate on all that and get philosophical and maybe I will at some point, but not tonight.

Am too worn down by the bureaucratic pecking, and he's too worn down by the cognitive pecking, and it's probably better just to leave things where they are.

It Gets Routine

It gets routine - at least in the sense that you're expecting cognitive decline week over week, so the fact of it isn't as shocking.  

Focusing on the details, then...

Last night's visit - he's upset when I get there because the day attendant won't let him put something important on the dining room table to have handy while we eat, and so he can share it with me.  Because of the language problems, it takes a while to work out what the something important is.  It turns out to be two pair of unused Depends.  I tell the attendant to let him go ahead - what's the harm?  He puts the Depends on the table and calms down and we have dinner.

He's disappointed yet again that I haven't brought my little son Alan.  Asks after him.  Then he asks me whether it's true that he and I met during the war, in the Coast Guard.  I tell him we did, and he asks me if I remember the Admiral, and I say that I do.  From the stories he used to tell, I know enough about the Admiral that I can throw in a couple of specifics and respond to a couple of questions, and it sounds plausible.

He spends some time puzzling over the old photograph of my mother, who he doesn't recognize, and the inset photo of a friend of hers, which he now doesn't recognize as a photo of a person.  Then he turns the photograph over - it's one of those double-sided standup frames - and there's another photograph of me at the age of one, give or take.  He doesn't recognize that, either.  He says it's a picture of the girls, playing.  He does, however, recognize a later photograph of me with my mother, and he partly recognizes one of me and him together.  He doesn't recognize himself but he remembers the picture was taken at the end of a trip. That won't last.

He asks yet again about whether his mother is living down at 82nd and West End - with his father (that's a new variation).  Wonders again what his mother thinks of what he's up to, and whether she's upset he didn't visit when he was in New York.  I tell him she's pleased, and not upset.

He puzzles over the Islamic prints.  Behind the bed are two frames containing a total of five prints - a sequence about the life of the prophet Muhammad.  My mother bought them decades ago.  There are two prints in the upper frame, and three prints in the lower frame, and you can see them reflected in the bedroom mirror - the one where he recently saw the reflection of the stranger.  He tells me he's really fascinated by that "two-three" (two pictures, then three pictures) that he sees at the top of the room, and that he was seeing it everywhere - in other rooms, and also downtown.  I think "downtown" means he got it blended with something he saw on television.  I say that design was really interesting, and when a design gets popular, suddenly it turns up everywhere.

We watch basketball and he sees me three times - once as a white player, and twice as two different black players.  One of them is injured.

As I'm leaving, the night attendant tries to give him his pills - the Seroquel and another one, a big blue capsule.  He gets resistant, which is new - says he doesn't want to take them and the Seroquel is so small it doesn't matter.  I tell him M thinks the pills are really good and he should try them and he does.

Tonight when I call him from the train, he sounds strained and hoarse.  It takes a lot of effort to decipher what he's talking about - something about coughing and vomiting and pain and lines in the legs when they tried to put the blue thing on him.  I finally work out that he must have choked on the blue capsule.  "Leg" means "tongue" and "lines" means some sort of pain or bad sensation.  The pill clearly made him sick and now he won't take any more pills.  "The girls here think they know everything and they're trying to force things on you."  I tell him I'll check with M and see what we can find out.  He doesn't really know who M is anymore but he's happy to have his complaint heard.  I'll ask M whether the blue pill is necessary - maybe we can do without it.

Or maybe a red pill would be better.

I don't have the energy to generalize from any of this right now.  Things are what they are.  Noted for the record.  Tomorrow they'll be either the same, or something else.

Ditching

Hadn't meant to be offline for so long.  A variety of reasons: fatigue, Obama fever.

He didn't, in fact, want to talk about the future last week.  Didn't remember that he'd ever brought it up.  I thought about not prompting him, then decided that was cowardly and did.  No luck - he had no point of reference and so we went on to discuss other things, mostly small.

Since then there've been new challenges.  Hyacinth showed up again.  Hyacinth is the name of the weekend attendant I thought we'd gotten rid of two weeks ago.  Side question - why are the torturers always named Hyacinth, or something along those lines?

Naturally he had a bad reaction, and I spent 20 minutes on the phone with him while he talked - not coherently but the anger was clear - about how bad his life is, "the worst it's ever been."  When that happens now I try to listen, then tell him I'm working on new arrangements so he can live closer to us.  He doesn't fully understand what that means and so it isn't much comfort.

He was almost equally bad on Sunday night, then improved a little as the weekday crew came back on shift.  Will have to see what tonight brings.

Now that the inauguration crowd has cleared out and it's possible to drive around the DC area again, I'll have to start contacting nursing homes.  Am past due to get the 2009 edition of the circus under way.

One more thought in passing - I was in New York last Thursday when Chesley Sullenberger brought US Airways 1549 down in the Hudson River.  I'm an aviation buff, and two apartments ago I lived in full view of the ditching site, so it registered.  And, speaking as a communications person, which I am sometimes, I thought it was interesting to see the incident turn into a metaphor for... well, for just about everything.  One of the MSNBC commentators got a round of applause the next morning when he talked about Obama trying to land the economy in one piece after first making a series of stern PA announcements about "hard impact" and "brace position."

On a basic level, extreme competence and extreme selflessness are nice, and rare, and to be celebrated.

The reason I bring it up is, of course, to do my own extended Alzheimer's metaphor.  The odd thing is that, even before US Airways 1549 happened - and usually under moments of Alzheimer's-related task saturation - I'd latched onto this recurrent image: I'm flying an airplane at cruise altitude when suddenly there's a sharp bang, a jolt, a series of vibrations, the instrument panel is lit up, and out of nowhere I'm at full alert and wondering, at ten thousand thoughts a second, where I'm going to put the thing down.

There are differences.  My airplane isn't an airliner - it's usually a battered, overworked, downmarket De Havilland Beaver.  This is possibly because my father is low tech and has been in service a lot of years and tends to spray oil and shed parts.  And I'm over land, which seems safer but probably isn't.  This is possibly because the stuff around my father seems rigid and hard and full of obstacles and if you hit it at the wrong angle it'll kill you.

Oh, last point - I'm not as good at this as Sullenberger and the odds of my spreading my father and myself across the landscape are comparatively high.

I hear that visualization can be useful and I'm glad to have this one to work with as the nursing-home-related excitement starts.

 

Taking the First Next Steps

A long day yesterday.  In the late morning, drove to Silver Spring to meet with the local care manager.  Seemed knowledgeable.  Operates at a larger scale than I'm used to - a small firm with a staff of about 10.  I briefed her on my father's case and came away with a short list of facilities to look at - three nursing homes and three small group homes that specialize in dementia.

Then, in the afternoon, a first phone conversation with the local elderlawyer.  Another briefing, and then she e-mailed me a set of questions, and a checklist of documents I need to collect.  I have some of them but not others, so I'll have to track them down.

My first reaction - I'm somewhat overwhelmed and slightly depressed.  This is predictable.  It's that moment when you move from the wonderful concept ("we're going to move him to a nursing home") to the ten thousand things you have to do to make it real.  I'd anticipated feeling this way.  But anticipation is one thing, and actually feeling it is something else.  The feeling expresses itself as fatigue and the desire to sit in a quiet warm room far away.  It'll pass.  You watch your emotions go by and then you start doing stuff, and before you know it you're somewhere down the path.

That's another concern.  I'm wary of runaway mechanism, and I'm in my last moments of wondering whether this isn't one.  You know how it works - someone suggests a nursing home and you say you'll consider it, and you make some calls, and before you know it you're having meetings and reviewing checklists and writing paperwork, and you're not entirely sure how you got there.  Did you make a decision or did the program start executing itself while you weren't watching?

Time out.  What did I tell myself the other day?  This is a runaway mechanism - in the sense that I'm not really in control of it.  It's a big process full of interdependent people and things and it's working itself out.  Nothing wrong with that.  And no point in resisting what has to happen.  I'm tired and depressed because I'm resistant.  I feel like a passenger because I am a passenger.  Or more accurately - I'm one of the participants in the big death-of-my-father-from-Alzheimer's thing, which continues to go in its own direction.  There are times when I get to push it one way or the other and there are times when it pushes back.  My role at the moment is to panic and second-guess events that have already happened and decisions that I've already made.

Meanwhile - my father told me by phone last night that when I visit, he wants to talk to me about the future, "since it's getting late in the year."  I don't know what he means by that.  Or, I do, but I don't want to have the conversation.  Consistent with my current quiet-warm-room-far-away theme, I find myself hoping that he'll have forgotten about it between yesterday and tonight.  Another predictable emotion passing by.  It's important to talk to him about the future and it's important to help him get there.  So I suppose I'll go uptown and see him now.

Never Mind

It never fails.  No sooner do I write about the lack of drama than... 

Well, what was I expecting?

Last night's call - a long monologue.  He's slow and seems to be drifting in a sort of dream-like state but he's focused and upset at the same time.  The issue: now that he's back in the city - visiting from Atlantic Beach - he needs to go down to 82nd Street to see his mother.  How is she doing?  Do I hear anything from her?  He thinks he'd better get a cab.  Is she doing well?  He's afraid she might be "bitter" if she found out he'd come to the city and hadn't visited.

This was threaded through a parallel discussion about the weather - how heavy the snow was and that I'd better not drive to the city because it was dangerous to go out on the street.  But (on the other track) he really needed to go down to his mother's - should he go get a cab now?

And then there was the problem of the house in Atlantic Beach - now that he was here, who would look after it?  People were coming and going and some of them were drunk and you can't really trust any of them.  How could he keep the house safe?

I kicked into my hyper-alert mode - but in a relaxed way.  I'm not sure how that's possible but it is, at least at times.  You step back and let the information come in and pay the closest possible attention to it on a word-by-word basis - but without any anticipation of what the next word is going to be, or where the conversation is going, or where it needs to come out.  I can't do it consistently but sometimes it happens.  So I listened and tried to float over it and figure out where I could engage him.  

I told him his mother was doing very well - I heard good things about her.  And I was sure she wouldn't be upset with him if he couldn't get there today, what with the weather and all.  In fact, it wasn't a very good day to be traveling around.  What would work best is if I call her and tell her what's going on, and then we can figure out a time that works for everybody, and then we can get them together.  But we'll definitely arrange a date and I know she'll appreciate it.  As for the house at the beach, there's a guy I work with who can help us out by going down there and looking in on it from time to time, and if the people there have to be dealt with, he'll be good at it.  And he can help keep us posted about his mother as well.

It took a few rounds but he finally decided that all of this was a good idea, and he'd do what I suggested, since I was good at working these things out.

That's where we left it.  I'm hopeful that by tonight, when I call - or at minimum by Wednesday, when I visit - he'll have forgotten that he needs to see his mother and he'll have gone on to something else.  I had that in mind when I worked with him - the solution that came to me was to get him pointed toward something in the future that he can look forward to - get him through this particular conversation - and then let him forget about it.  Or not, in which case I'll wait for another solution to present itself.  Worst case, I'll just keep deferring the visit, the way I do with the visit he wants to have with his nonexistent nine year-old grandson.

There was, of course, the additional thought that if he could get together with his mother, that might be better for all concerned.  For the record, she died in November 1977 at the age of 91.  But I gather she has a say in when he gets to see her, so I'm just going to have to let the arrangements work themselves out.

Until then, a new New Year's resolution - I'm going to try to stop making predictions about the new state of calm, or for that matter the new state of anything.  There are no states - there's just what's happening this second, which will be different next second, and this second doesn't tell you anything about the next one.

Conclusion: there's no drama.  Except when there is.

 

A Few More Episodes Without Drama

It's mostly a good thing to accept the way things are, but there's a downside - the sense of drama falls away.  I'm better off without it, but I miss it, too. 

For the moment, however, the situation seems relatively calm again.  I'm sure my new attitude is partly to credit.  More credit goes to Seroquel, which seems to be getting traction.  Wednesday night he was actually lucid at a couple of points.  On his own he was able to produce a childhood memory - waiting in front of his building at 82nd and West End Avenue for his father to bring the car around and take him to see the Giants play at the Polo Grounds.  And there was another memory of the Hotel 1440 - the boarding house at 14th Street and Rhode Island Avenue where he lived in Washington in '44-'45 (the Coast Guard ran out of barracks space and put him on subsistence in quarters).  The intense, obsessive energy wasn't so much in evidence - he was more subdued.

Of course there are limits.  Within a sentence after the Polo Grounds memory, he'd segued over to a long discussion about how he'd adopted me so he could be my son.  Short-term memory continues to fail.  And last night, on the phone, we spent 40 minutes dealing with the non-working television (a group effort - I worked hard trying to tell the attendant how to change fuses before she looked down and discovered that the TV was unplugged).  When it came back on, he went off into another stream-of-consciousness riff on what he was seeing: "Now there are two women and they have food and there's a guy there, we know him, and down in the corner it's E-S-P-N-N, and the windows are black - is it that way where you are?"

Before the TV riff I'd caught myself thinking, maybe he's stabilizing and the whole attendant thing will smooth out and we can leave him where he is a while longer.  We can't, clearly, so I'm going ahead - in  a measured way, but going ahead - with the nursing home adventure.

Nevertheless, at this particular moment he's mostly quieter, and there's food in the apartment thanks to the attendants, and the attendants are pretty good except for the weekend ones, and he still recognizes me as a person (or sometimes several people), and that's all better than it could be, so I'll take it.

The last plateau didn't go on more than two weeks, though.  And you know what happened after that.

The drama will be back.

More free-fall, anyone?

Baseline for 2009, or, Death Has a Life of Its Own

Had a full week off.  Am grateful for it.  Julie reminds me here - correctly - that not everybody gets to come up for air.  I try to stay mindful of that.  I've said this before, but it's worth repeating every so often, and certainly at the beginning of the year - my situation isn't nearly as bad as it gets.  Having the patient under your roof is worse.  When the patient is your spouse - that's worse.  When you're the patient - that's worse.  For the record, I don't blog my Alzheimer's situation because I think it's exceptional.  I blog it because it isn't exceptional.  So remember, however difficult all this seems - and however difficult it is - we're nowhere near the extreme.  We may not even be halfway there.

A few quick notes on his situation, by way of a 2009 baseline - judging by phone conversations, he's declined somewhat over the past few days.  He referred again to the person in the mirror, who sometimes waves and sometimes doesn't.  He had a visit from M yesterday but didn't remember it unprompted - and when he did, said that she'd brought in doctors and worked much closer to him than before... maybe because he'd fallen in front of her.  None of this happened, of course.  The hallucinatory content is getting really thick.  And the descriptions are getting harder to understand.  More than half the word count is gibberish now.  I try to respond and react but often I don't have the slightest idea what he's saying.  He senses this and gets irritated, because I've missed the target and seem to be humoring him.  He's right - I am.  But I don't know where the target is.

His mood is slightly better - the Seroquel seems to be taking effect.  The weekend attendants continue to be bad and he doesn't like them, but he's no longer producing the violent reactions we were getting a couple of weeks ago.

I've started the nursing home transfer process - opening moves, at least.  I've formally engaged the Maryland care manager and I'm scheduled to meet with her next week.  I'll set up the appointment with the Maryland elderlawyer, too.  Within a week or two I need to have the Maryland crew in place and get them talking to the New York crew.

This will be daunting.  However, I'm going to see if I can avoid getting overwhelmed.  I'm not much for New Year's resolutions but this will be mine - I need to recognize that my churning and my emotional expenditure is, for the most part, completely nonproductive.  I wrote about this last week and the week before, and thankfully the idea seems to be taking hold that I can gyrate and gyrate and not affect the situation in the least.  That doesn't mean that I'm going to sit back and let things slide - there's plenty of work to do and there will be hundreds of day-to-day situations that need intervention.  So I'll do all that.  But what I need to keep in mind is that the underlying circumstances aren't going to change.  He's not going to recover any capacity that he's lost, and in the course of the year he's going to lose a lot more.  And while I can try to make him as happy and as comfortable as possible, he's never going to be happy or comfortable.  A year ago he had the capacity for that, but now he doesn't.  He's dying and he's going to have a difficult death and nothing is going to alter that.  It's its own process and I can't stop it.  You might even say that death has a life of its own.

What I need to do for everybody's sake is recognize that and work with the situation as it is and not try to turn it into something else, or come apart because I'm angry at the contrast between the way it is and the way I'd like it to be.

There.  That's a good resolution.  Let's see how long it holds.

Uptown now - time to get back to specifics.