Dementia Nights

Edging Toward Surgery

On Tuesday, M took him to see the ENT and the head and neck surgeon.  Concerning the ear pain, the ENT found nothing - just ear wax and some dry skin.  That's fine if so, but M isn't satisfied, and wants Dr. B to have a look. 

On the other hand, M was thrilled at the results of his hearing test, which were "excellent!"  Why is everybody so happy to tell me about the wonderful state of his health?  If it was his heart or liver that was atrophied and dessicated and a third of its former size - instead of his brain - nobody would be enthusing to me about how healthy he is...

As for the surgeon - he thinks the nose lesion has invaded cartilage and of course wants to remove it.  He got on the phone and we talked about anesthesia.  He said he's willing to try local, but "it depends on your father's ability to sit still and follow instructions for 45 minutes," while the surgeon works on the site and does a skin graft.  As to risks, he tells me that "whether you do local or general, it's pretty much the same," and starts talking about anticoagulants, which you'd use in either scenario.

They really don't get it.  You want to have a conversation about the impact of anesthesia on dementia and you might as well be speaking some other language.  They stop and blink at you, then go on talking about whatever was on their minds before you interrupted.

I have the feeling it's going to work out this way: they'll start him on local, decide he's not being cooperative enough, then switch him over to general, and he'll come out in fully developed Stage 7.  Might as well get the feeding tubes ready.  Of course I'll raise concerns and protest and all that, but it won't make any difference.  Once again, the whole thing has a life of its own, and I can make all the noise I want, but my ability to affect it is pretty limited.

A new wrinkle last night - E took me aside and told me she'd found spots of blood in his Depends.  Not a lot, and it didn't recur this morning, so we're not treating it as an emergency yet.  He has to see Dr. B anyway for pre-surgical clearances, so we'll let her take a look.  Back in 2006, when he was still doing housework, he had urinary bleeding that was caused by an injury when he tried to lift something heavy.  Now it takes him a lot of effort just to stand up from a chair, so this might be related.

He's continuing to go south.  For a couple of hours last night, I played conversational tennis with him along these lines:

Him: "Do you think people would abalom [he makes a circular motion with his left hand] the impel fractam?"

Me: [processing fast and guessing wildly - he focuses a lot on how to engage other people, so let's go with that...] "Yeah, I think people would be very interested in that - we should try it and see how they react."

Him: "Yes, we should do that."

At roughly the same time I noticed that he's no longer able to use a fork and knife at the same time - he can only concentrate on one of them, and whichever one he's using, he neglects the other.

Then he mistook a paper napkin he was holding for part of his lasagna, and began chewing on it.  He complained about the flavor and I suggested it was a bad piece and he ought to put it aside.  He did.

The book paranoia continued into a second week.  He wants me to bring back the books I've borrowed so we can fill in the gaps in the shelves.  Project for next week - find books in other rooms and stuff them onto the living room shelves.

His ability to process identity is mostly shattered.  It's clear now that he regards me as one person when I phone him, and another when I visit.  On a phone call the other night, he complained at length about Alan, who never brings his [nonexistent] daughter with him to visit - how is she ever going to start dating if she never gets taken anywhere?  But he told me I ought to get to know Alan, who "comes in and knows to order food.  He uses his own phone.  You could learn from him."  Last night he understood I was Alan - and was upset once again that my [nonexistent] son couldn't join us.

All of these are pre-surgical symptoms.  Maybe in a month or two I'll be remembering this as the time when he could still carry on conversations.  It's worth realizing, though, that without the surgery, that'll happen in six months or a year.  There's no question where we're going - it's just a matter of how quickly, and by what path, and what the scenery will look like on the way.

More scenery to follow, soon.

Dancing with the Doctors

We're dancing with the doctors and they're dancing with each other.  The usual pre-surgery drill.  The head-and-neck surgeon has to evaluate him.  But first the head-and-neck surgeon needs to talk to Dr. L about the depth of the lesion.  And he needs to talk to Dr. B about whether my father can tolerate anesthesia.  Dr. B will need to sign a clearance for surgery - which means that she'll have to see my father, too - within a short timeframe before the surgery is scheduled.

We also need to get him to an ENT specialist.  For at least six months, he's been complaining about pain in the right ear.  Dr. B has cleaned wax out of it several times, but the pain returns the next day.  We're not sure why.  Dr. B thinks it might be the result of the dementia.  But given that my father is producing all these surface head-and-neck cancers, I think it might be worthwhile to check out the ear and see if something else is going on.  I'd like to know that before we take him to the hospital and start harvesting things again.

The only break we've gotten is that the ENT and the head-and-neck surgeon work in the same building, near Mt. Sinai Hospital (it's a head-and-neck building, I guess - no doubt the rest of the body is somewhere down the street).  Thankfully, M made friends with the surgeon's assistant - one of the few human beings among the many robots on the surgeon's staff.  The assistant said he'd get us a walk-in appointment next Tuesday, when my father is already scheduled with the ENT.  So we can knock off both appointments in a single visit and minimize the trauma (visiting doctors is always traumatic these days).  Good work, M.  And it proves a theory of mine - it pays to have friends in low places.  Having friends in high places is always useless - they're never connected to reality and they can never accomplish anything - but a good staff assistant is pure gold.

Otherwise the grind continues.  When I got to my father's last night he was cheerful and superficially coherent (that is, he seemed to make sense and you really had to listen to catch the nonsense words and off-target responses).  E has a good effect on him - she humors him and that relaxes him and when he's relaxed he's in better shape.  She looked exhausted - humoring him through a 12-hour shift is an enormous amount of work.

As usual, things went downhill through the course of the evening.  The only major event was the death of the lending library.  It came unexpectedly.  Longtime readers will remember my father's obsession with lending out his books - and then trying to get them back so he could give them to me.  J, the Partners social worker, collaborated with me to create a fictitious lending library - she'd borrow books and bring them back and log them in and out.  More recently, he's been unable to follow elaborate procedures like that, but he's always insisted that I leave with five or six or eight or ten books.

Yesterday he developed a new delusion - I couldn't follow all of it, but the gist was that there was going to be a musical performance in the apartment, and people were coming to hear it - could I be there, too?  We talked around the subject of the concert while I tried to figure out what it was.  At the end of the evening I went to the living room and, as usual, made a show of picking out books to take home.  He got upset.  When I took the books, there were gaps in the shelves.  What would people think when they came to hear the concert?  I thought about moving books around to fill in the gaps, then decided the best move would be to put the books I'd taken back on the shelves.  So I did, and I left empty-handed.

This might be a blip or it might be a watershed - I'm not sure which.  I didn't have time to think about it when it happened.  I was too busy trying to get out the door.  He can no longer deal with concepts like "Washington" or "work," and he's mostly convinced I live just down the street, so it makes sense to him that I'd be able to stay over - not just overnight but for several days.  That way I'd be able to hear the concert.  Once again I explained as best I could why that's not possible (but I'll be back very soon), and essentially threw myself out the door.  I even forgot to leave the petty cash - had to ask M to cover it and mail her a check...

And afterward I haven't been inclined to think about it.  If I wanted to, there'd be plenty of starting points - not only the lending library but also his passion for books.  They were his only hobby and reading was the only thing that would relax him.  We'd buy him books for every occasion. And now he can't et cetera et cetera....  As I've said before, it's useless to go down that path.  He used to be one way (fact), and now he's another way (new fact), and any dramas you conjure out of the difference are probably fictions ("Father," a set of assumptions, gives way to "Alzheimer's Patient," a contrasting set of assumptions), probably self-serving ("life should be serving me better assumptions"), probably self-pitying ("life won't serve me better assumptions, isn't that cruel?"), and a waste of energy, which I don't have to spare (the fatigue at the moment is absolutely blinding).

So the books will stay where they are.  A shame they're not doing anyone any good at the moment - it's a nice collection.  Very good on popular history.  Not much fiction, which is OK.  Goes with my theme.

Like I said, maybe next week we'll find out if the don't-take-the-books thing is permanent.  And maybe we'll find out if there's anything growing in his ear.

The dance continues.

 

"He Could Live for Another 10 Years"

Oh.  Great.

In fairness to Dr. L, he was making a different point than it seems.  Biopsy results are in - the lesion on the nose is a basal cell carcinoma.  If left untreated, it will be disfiguring - "like a rat has been eating his nose."  And in the absence of any health issues (other than brain cell death on a massive scale, of course), that could be a problem.  So once again he recommends we treat.  The good news is that he's confident that the surgery can be done on an outpatient basis, under local.  Taking everything else into account, that argues for going ahead.  My priority is to avoid general anesthesia - which, again, is what pushed us into last year's nightmare.

Nevertheless, the good Dr. L was so cheerful about the prognosis that I felt like I had to hit him over the head with a version of my "he's in perfect health except for the Alzheimer's" monologue, which is getting a lot of work these days.  Sorry, but another 10 years doesn't seem like anything to celebrate.  Or maybe that's just me.  Dr. L was willing to agree.  "I'm not saying he's in perfect health, I'm saying the body is stronger than the mind."  Fair enough.  I thought about getting into a discussion about the mind/body split and why it doesn't make sense, but decided to let it go.  Best to quit while you're ahead.

A couple of seconds ago I got an e-mail from Dr. B.  She agrees that surgery under local is a good idea.  So we'll go ahead.  With luck, the adventure won't be on the scale of last year's.

My father's word formation issues were back in full force last night.  He was wistful, and through the haze ("they're not umprulling the plancent...") I was able to make out this: he's upset because the Gordons don't come around to visit anymore.  Maybe it's because he's old, or maybe it's because they've got problems of their own.  I said I thought it was probably the latter - people get caught up in their own affairs and then they lose track of you.  In fact the Gordons were cousins, and he hasn't seen them since the late 60's.  It was during the 30's that they were really close.

So - a decade of this.  Well, not this, really - speech will be gone in about a year's time, and mobility maybe a year after that.  And otherwise, this game of medical Whack-a-Mole, but nothing decisive.

It is what it is.  Given that - and taking the whole picture into account - we'll put him through a morning of surgery and hope for the best. 

And maybe at some point it'll become evident what "the best" is.  I can't say I have a handle on it now.  But time will tell.

 

Things Get Worse

Of course they do.  What were they supposed to get?  Better?

Still no word from Dr. B or Dr. L.  He's supposed to see Dr. L again tomorrow.  Maybe we'll have biopsy results, maybe not.

In the meantime - an e-mail yesterday morning from M: he hasn't slept the past two nights and has fallen several times.  He's more disoriented.  She's ordered the night attendant, E/2, to spend the night in his bedroom watching him, not listening from the next room over.

I was expecting the worst when I phoned him yesterday evening to tell him I was coming over.  But he sounded surprisingly robust and cheerful, and his speech was more coherent than it has been for the past couple of months.  So I was on the verge of relaxing when he asked me who it was that had told me to visit.

When I got there he was still robust and cheerful and surprised that I was there - he had no idea that anyone was going to visit.  Then he launched into a description of how bad his situation was - so bad that last night, several strange men invaded the apartment and he got into a fistfight with them.  Then some of the building staff came in and joined the fight on his side and there was a melee in my old bedroom.

This is not a new story.  Typically, he produces the mass-fistfight hallucination when he's in the hospital.  Sometimes the men are coming to abduct him, sometimes they just invade.  It's classic sundowning.  I suppose you could do something psychological with the fistfight imagery - I'm not sure what, though it seems to support my theory that there's more to his makeup than the apparent good cheer.

The bigger news, of course, is that he's now sundowning at home.  That's a first.  As usual, I asked him about the men and where they might have come from and what they might have wanted.  His answers weren't helpful - he didn't really know.

Then he turned to a card table that had a collection of family photographs on it, and started talking about them. Once again the results were exotic.  He looked at a studio portrait of me when I was 10 - recognized that it was me, and remembered the studio and the people who ran it.  Then he said that the photograph that interested him the most was one of "the three of us - you, me and the mother."  This was, in fact, a family portrait taken at an event in 1980.  I showed it to him and he said, "There we all are.  That's my father," he said, and pointed at himself.  "And that's you," he said, pointing at me.  "No, that must be me - so who's that?" he asked, and pointed at my mother.  "That must be me," he said.  "No, that's you."  I tried pointing out who I was and who he was - didn't bother about my mother - not worth the distress.  He registered it but not with a lot of conviction, and lost the focus after a minute or so.  Finally he looked at a portrait of my mother - a black-and-white studio glamor shot from before they were married.  "I have no idea who that woman is - my mother must have taken her for the picture.  It looks like they put a lot of work into it."  Then he changed subjects - something that he does more and more often, sometimes in mid-sentence - and began puzzling about his name, and why it appears on all his mail.  He didn't fully understand that the name was his.  "It's the same two or three names over and over - why do they put it there?"  I told him that made it easier for people to find him and send him information.  That didn't seem to make sense to him - not that he rejected it, he just couldn't take in the concept.

The rest of the evening went the same way.  His word formation continued to be good, and that made it seem like his cognition was better, but obviously it wasn't.  Long-term memory seemed better but he could barely work with information.  Outside of family memories there wasn't much there - we watched some of the Mets game and I made a few references to Jackie Robinson (it was Jackie Robinson night around both leagues) but that didn't register - he gave me his uneasy laugh (translation: I have no idea what you're talking about) and otherwise didn't reply.  In contrast to the past few weeks, he didn't fall asleep - he was still alert and energetic when I left about 11:30 p.m.

So something has changed, most likely something organic.  I'm used to the deterioration but was brought up a little short by the improvements - some of the speech, some of the memories, the (higher) level of energy.  Maybe it's that some pathways die and that opens up ways for other pathways to re-connect.  Not sure.  I'm not exactly a professional here, just a field observer.

Amateur's conclusion: in spite of the improvements, things are less good.

I'm not sure what to do with that except to write it down.  I suppose I ought to share it with the professionals and I will - it might help influence their decisions.  Assuming, that is, that they decide to get in touch with me and share what they're thinking.  I guess I'll find out soon.

Death With Dignity? Ah, Maybe Not...

The growth on the end of his nose looks medieval.  I'm sure they damaged it somewhat and made it look worse when they did the excision for the biopsy.  But on its own terms it's pretty bad - much larger than it was last week, which is when it appeared.  Seems like it's bound to be disfiguring.  I'm not sure there's going to be any option but to do surgery on it.  I know I was looking for death with dignity - by which I mean death by something other than Alzheimer's - but I wonder now if this particular problem gives us the right door to walk through.  We'll see.  Biopsy results won't be in 'til next week, and the doctors won't be back 'til then either, so nothing can move forward immediately, except perhaps the growth...

The visit to Dr. L left him agitated.  According to the attendants, he didn't sleep at all Tuesday night and he bounced off the walls most of Wednesday.  He only began to calm down just before I went to see him.  E looked exhausted when I got there.

Weirdly, the adrenaline rush brought him into better focus - he seemed more lucid than he has the past few times.  Not totally - as usual he trailed off as the evening went on.  Cognition is of course as strange as ever.  At one point when we were watching the Mets game, he mentioned that the field didn't look the way baseball fields used to - "it's got a big corner kotcher, it's more square."  Not entirely a new development - for more than a year he's been telling me that familiar objects look different.  But this time the wording was farther gone - I don't know what a corner kotcher is.  So I gave him a neutral response - "yeah, it sure seems that way" - and he was satisfied.  At other times he wasn't - once again showed slight annoyance when my answers didn't conform to his questions.  At still other times he couldn't follow what I was saying and replied by laughing uneasily - a sort of quiet, tense "heh heh heh heh heh."  Or he'd try to pick up the conversation by using similar-sounding words - I'd say "now the Mets get to bring up the top of their lineup" and he'd say "the desk is the pop-off the frime-up." 

Toward the end there was a moment when - for the first time - he acknowledged that he was having trouble with comprehension.  I said, "Now the Mets are only ahead by two runs," and he said, "The Mets are ahead... could you tell me that again? I'm not hitting as well as I used to."  He'd been pretty good with baseball, even through last fall, but now it's gotten too abstract for him.  So have a lot of other things.

It would be nice if there was some alternative to this - some alternative that didn't involve his having his face eaten away.  But nice doesn't seem to be the operative principle here.  In this corner of the universe, the choice seems to be, bad or bad?  Shortened life without a face or prolonged life without a mind?

At least we have the parameters in place for next week's discussions with the doctors.  Over to those shortly.

This Year's Crisis

The first one, anyway - and as usual, not the one I was expecting.

He saw Dr. L., the dermatologist today.  The scalp lesion is apparently not a major concern.  But there's a growth at the end of his nose that is.  I noticed it last week - a big dark red blotch right at the tip, almost like a scab.  It will have to be biopsied but Dr. L thinks it's the recurrence of a very aggressive melanoma.

The medical machine is already kicking into gear.  Dr. L is arranging a referral to the head-and-neck surgeon.  This is the same crew that handled the squamous cell carcinoma last May.

You know what happened then.  If you don't, go visit the archives.  So I've just sent an e-mail to Dr. B, asking her to take over and guide us through the system.  She's the only medical professional on scene who understands the full picture, and I want to make sure the decisions are made in context.

This isn't going to be easy.  I know, based on last year's experience, that I don't want the medical establishment to rush forward and start whacking diseases with no regard for his overall well being.  The last thing he needs is another major surgery - with all the damage to cognition that he took the last time.  And I don't want to damage him that way just so he can die later of Alzheimer's.  That's exactly the danger.  For some reason the medical establishment can't bring itself to think of Alzheimer's as a disease.  Today on the phone M, who should know better, told me that "he's in very good health apart from the Alzheimer's."  Would you every think of saying, "he's in very good health apart from the terminal cancer"?  Again: his brains are dissolving but that doesn't seem to count as a health problem.  It's like the ancient Egyptians, who didn't think the brain mattered and used to pull it out of the skulls of their mummies with a hook, while taking extreme care to preserve all the other organs.

On the other hand, an aggressive facial melanoma isn't exactly old movie disease.  It could be painful, it could be disfiguring.  So maybe with it all, it makes sense to intervene.  I'm not sure what the palliative care standard would be for aggressive melanoma in late-stage Alzheimer's.  That's what I need to find out.

Dr. B will be a good guide.  She gets it when the others don't.  It helps to be a gerontologist and it helps even more to be a good gerontologist.  So I expect to be working with her closely.

Updates, as they say, will follow - not before next week, though.  All the MD's are headed out of town for the holidays.  Doesn't matter - a few days won't make a huge difference.

Meanwhile on the Alzheimer's front, things get worse.  His cognition is highly variable - there are good days, like Saturday night, when he gave me some decently appropriate career encouragement, and bad nights, like Friday night, when he thought I was a phone solicitor and (politely) hung up on me.  He seems to have decided now that I'm several different people - the one who visits, the different one who calls, the one on television (usually an athlete but sometimes President Obama), all depending on context.  The identities match the channels - the one who calls is always the one who calls, but never the same as the one who visits.  The one who calls has a son, and sometimes the son is the one who visits, and sometimes the son is somebody else altogether.

His speech is deteriorating.  I'll have to make an effort to transcribe a couple of lines one of these nights so you can get the flavor of it.

I also noticed over the weekend that his listening comprehension is beginning to go.  Unless my answers are very simple and direct (e.g. "yes" or "no" in answer to a yes-or-no question), he has trouble following them.  So another logic center is starting to go down.

He's mostly cheerful.  We'll see if that continues to be the case or not.

Exceptions and Rules

The visit as usual.  He raves, but in a mostly cheerful way.  He falls asleep and vocalizes.  He wakes up and insists I stay for the night.  I tell him I already have, but I'll be back very soon.  Tomorrow?  Yes, could be tomorrow, probably Wednesday.  He's OK with this for the moment - he no longer has a sense of time and the distinction between tomorrow and Wednesday isn't all that clear.

There were variations.  When he woke up, he took a long walk to the kitchen to look in the freezer for his wallet, which he needed in case he wanted to buy something.  Interesting that it's taken this long - 'til late Stage 6 - for the classic symptoms to appear.  For years we had everything except the memory problems and the confusion about objects and all the others that most people think about when they think about Alzheimer's.  No wandering yet, thankfully, and no real rages - just some paranoia, but the Seroquel seems to be doing a decent job of keeping that under control.

I had this thought while I was visiting him last week and again this week: He's really dying of Alzheimer's.  I know that sounds obvious and it is.  On an intellectual level I've known it for years.  If you'd asked me how he was, I would have told you exactly that.  But I'm not sure I felt it completely.  I've been busy solving his problems, and without realizing it I think I started thinking of him as one big problem to be solved.  But there was something about going to the policy forum that threw me back on myself.  I think it was the effect of seeing so many people suffering with or trying to manage Alzheimer's.  I met people and saw videos and thought, wow, there's someone who looks or sounds just like my father. So when I went back to visit him last week I was able to see him in a bigger context.  As a result he seemed less distressing and more natural - like he's going where he's going, easily and inevitably, and he'll go there no matter what I do or don't do.  So I relaxed a bit and felt less compelled to intervene.  Of course I'll keep doing what I need to to keep him comfortable, but I'm suddenly a little less deluded about what I can actually accomplish for him.  This isn't a new thought - I've had it before, many times.  But it was more palpable this time - deeper under the skin, if you know what I mean.  You keep turning the corner on the same insights and with luck, they're a little more authentic each time.

Similarly - I was talking last week with a friend and colleague and said about my Alzheimer's experience (though I could have meant other things, too) that you go into something like this thinking it's the exception, and it's only much later that you find out it's the rule.  By that I meant that when my father first started to come apart, and I first had to commit time to him, I told myself that this was something I was going to have to do for a period of time - maybe for a couple of years - and then it'd be over and I'd go back to my life the way it was before.  There'd be this blip - a big interruption but still an interruption - and then everything would reset to normal.  It only dawned on me slowly, over time, that I wasn't ever going back - that what I thought of as an interruption was in fact my life.  Someday conditions will change, and something else will be my life.  But this thing that I'm in now is so big, and the impact is so deep, that I'm never going to be the same afterward.  All the things I used to get caught up in, like protecting and advancing my career and ensuring my security... they burned away while I was busy doing Alzheimer's.  I might go back and focus on them again and be dedicated and professional, but it won't be with the same sensibility, because the Alzheimer's thing is always going to be there.  I'm not sure what form the Alzheimer's thing will take after my father is gone, but it'll continue to play out.  There's too much of it for me to be able to just put it in a packing box and move on.   

This is a good thing, by the way.  Like my thought about my father - that he's really dying - this means that I don't have to be so caught up in the contrast between the way things are and the way I'd like them to be.  The reality is that he's dying.  The reality is that my life is the Alzheimer's life and a part of my life will always be the Alzheimer's life.  So that's the way it is and I might as well just deal with it.

The exception is the rule.  Your life is your life.  Your life is what happens.  By "happens," I mean, "falls on your head like an anvil."

The barrier is the gate.

Things are what they are.

I'll see him again next Wednesday.