Dementia Nights

Barnett R. Ampolsk, 1922 - 2010

He died this morning at 6:55.

It's a blessing.  I've said that before but I need to say it again, because this time it counts.

As to the circumstances - I mentioned absurdity last night, and things continue absurd.  They always are, but the particulars are always a surprise.  Specifics, briefly: the nursing home called exactly at 7.  The sound that announced his death was the xylophone ringtone on my iPhone.  Of course I've known for years that someday I'd likely get a call announcing his death.  And the ringtone on my iPhone has been set to "xylophone" since I bought it.  But somehow I never managed to put two and two together.  So the sound of death was exceptionally upbeat and cheerful.  I have no problem with that.  Neil Gaiman would understand.  But no, nothing I would have foreseen.

As soon as I got off the phone I pulled on my coat and an enormous fur hat - the temperature in the apartment had fallen into the 20's - and sat down at the dining room table to start making funeral arrangements.  Taking notes was difficult because the ink in my pens had frozen.  Funeral arrangements are a mess because the area is still staggering in the aftermath of the blizzard.  The route to the funeral home is barely passable.  I won't be able to get there 'til Thursday to sign the cremation order, and since there's an enormous backlog of rescheduled funerals, our (very small) ceremony probably can't happen until next week.  Interment, in New York, will be later still.  I suppose it's all a throwback to our old family funerals in Russia - the ground is frozen and we'll have to wait for spring. 

There was one other notable telephone moment.  At one point, the funeral director put me on hold and I got to listen to hold music.  They play classical, not surprisingly, and at that particular moment what they were playing was a Schubert song called Der Lindenbaum - The Linden Tree.  It's the fifth song in a cycle called Winterreise - Winter Journey - which is about a young man who, rejected in love, goes wandering across an increasingly bleak winter landscape that's both real and metaphoric and winds up insane, welcomed by a figure who represents madness or death or both.  In Der Lindenbaum, the narrator speaks to the tree, and the tree speaks to him, just as he's starting out on the journey.  It sounds like a lovely, comforting song - "Come here, my friend," the tree says, "here you will find peace" - until you realize that the tree is actually inviting him to commit suicide by hanging himself from its branches.  I'm sure whoever programmed it for the funeral home thought that it was just lovely and peaceful.  I think it was an interesting choice - both for itself, and for the way it went together with the xylophone ringtone.  It made the morning that much richer.

Having resolved the funeral mechanics, and after a brief conversation with the elderlawyer (dealing with estate issues all of a sudden now, and trying to find out what paperwork has to be handled, when, by whom), I got back into bed to try to keep the cats warm.  Power came on a couple of hours later, then went out, then came on again, and now seems to be holding.  It'll take several more hours to warm up the apartment.  I'm able to write this at my computer, not on the iPhone, but I'm still in my coat and hat.

No, not the way I would have expected a solemn thing to play out.  But memorable - yes, it is that.

P was kind enough to call to check on me, and to give me particulars.  The end was sudden, but comfortable.  She saw him on Friday, and helped cut his fingernails.  He was talkative and cheerful and incoherent.  On Saturday the respiratory distress began.  On Sunday evening they stepped up the morphine, and finally gave him the "breakthrough dose" - a carry-forward of the dose that would normally be given four hours farther out.  It didn't reverse the distress but it calmed him down, and he died quietly in his sleep.  She suspects that, given the problems he'd had eating, he aspirated food, and that led to another pneumonia, and that was what killed him.

I suppose I'm grateful that the last time I saw him - a week ago Friday, before my flu - he was unusually comprehensible, and we had something resembling a conversation.  If I'd seen him last week he would have been worse again, the way he was after the first pneumonia in mid-January.  It doesn't make a huge difference but I'm glad there was some recognition at the end.

I'll have a great deal more to report - death is a labor-intensive process, especially for the living, and I'm sure there'll be fresh incidents and more to reflect on.  For the moment I'm just going to try to assimilate it all, though the temperature is still keeping me from getting at anything really profound.

I really appreciate everybody's comments over the past day or so.  I probably won't be able to respond individually for a couple of days.  But I'm grateful for everybody who decided to go on the journey with me, and especially now.  Of course I'll keep you updated.

Again - be happy for him and for us.  This is a liberation.

More soon.

Absurdist Deathwatch

The nursing home called just after 11 to tell me that my father is in distress, his oxygen levels are extremely low, he could go at any time. Did I want to come up?

I want to but I can't. The circumstances are these. When I got the call, I was lying in my bed, next to my wife, under multiple blankets and mounds of coats. It's about thirty degrees in our bedroom and we're trying to shelter our two cats under the covers. We live in the Maryland suburbs of DC, in Montgomery County, the local area that got the brunt of the blizzard. Our power went out at 10:30 Friday night, and hasn't come back on since. Roads are iced over and we're being warned to stay off them.

The nurse who called me wanted to know if I'd gotten last night's message. Of course I hadn't. They called on landline and our landline is out. So I hadn't heard about his restlessness. This is the first I've been aware of anything. I last saw him a week ago Friday - the day he was suddenly so much more coherent. I came home and promptly developed that massive cold. So I couldn't visit at all last week.

I heard from the hospice nurse on Tuesday. She said he was incoherent again, but said "mother" and "sister" and "Evelyn.". Was Evelyn his sister? Yes, I said. Isn't it remarkable what people will remember, she asked. Yes, I said. She's one of those people who wants to find positive news and I guess there's nothing wrong with that. So there were no warnings.

Of course, I suppose the fact he was on hospice is enough of a warning. But you're never prepared for how things actually are. For example, I wasn't prepared for a late night call in the middle of my siege-of-Leningrad apartment. And I wasn't prepared to write this update on my iPhone in the dark. Nevertheless, here we are. Put another way, life is Zen. Put more simply, we are where we are, same as always. Apologies for odd formatting and typos. This is less than ideal. But I'll try to keep you posted.

A Person Could Develop a Cold

Nothing much to report except that I'm laid up with a cold/flu thing for the second time in three weeks.  I could put this down to any number of complex causes - stress, fatigue, mind/body interactions - but I think the simple explanation is that the nursing home is a kind of petri dish, especially in winter.  All I know is that I was there for 40 minutes on Friday - all of it on the dementia unit, which is locked and effectively sealed - and I had a full set of symptoms by Sunday morning.  Could be there was some other reason but I doubt it.

There being no choice, I've gone to ground and will count on phone updates from the staff if anything breaks loose.  Though if it turned out that my father's other-than-Alzheimer's health was better than mine, that wouldn't surprise me either.

More soon.

Death Has a Life of Its Own II: He's Verbal Again

A long phone conversation Thursday with P, who was just back from a three-week vacation.  She said my father was at talkative as ever.  I didn't believe her - figured she was just describing some of his new vowel sound-based flights.  So I was a bit stunned Friday when I showed up for a visit and he recognized me immediately and launched into an extensive monologue, just like the ones he was able to produce during the first days in the nursing home, or even in the last days in the New York apartment.

The gist was this: there was something he needed to get for me, we need to go up to Broadway to get it because we had people coming over, and he wanted to make sure he did the right thing by me and got me what I needed. we'd have to go up to Broadway to get it, and then his mother was going to come over but not until Tuesday... or... when is she going to get there?  He went on like this nonstop for about 40 minutes.  There were even some old, apartment-style interruptions.  Someone had turned on the TV for the patient in the next bed - it was tuned to CNN, which was showing President Obama's meeting with Congressional Republicans.  My father noticed and interrupted himself and nodded toward Obama and said, "Oh, there's that guy again."

Underneath the spectacular verbal flights, the same recent symptoms were playing out.  He began to fold and re-fold the bedcovers, then he tried to offer me the bedcovers, then, at around minute 38, he began to get agitated because there was something he needed to do to get ready for his visitors, and as usual he started to try to hoist himself out of bed.  And because he couldn't, the agitation got worse.  I decided to leave at that point.

I'm not remotely sure what to make of the sudden return of his speech faculties.  I think the best answer is, not too much.  Apart from the verbal flood, his condition hasn't changed.  He's still immobile, still going through the same repetitive obsessive motor behaviors.  His attention fails and the distress sets in at about the same point.  We're all tempted to confuse verbal facility with intelligence - the fact that you're loquacious and produce intricate sentences doesn't mean that your cognition is sound or that you have a clue what's going on.  For further proof, turn on a news channel and listen to the pundits, or read a book or article by one of those business gurus.  So to me this doesn't mean recovery or improvement.  It's just an odd overlay on the constant decline.  My take is he's now a stage 7d patient who can talk a blue streak, which is nonstandard but doesn't really change the picture.

So the monologue isn't something to celebrate, in the same way that when he crashes, that isn't necessarily something to mourn.  Since I live in a world of mixed feelings, I'll even admit to a small degree of disappointment - oh, god, you mean he's going to hang in like this for another year?  On the other hand, there was in fact a kind of connection going on - I wouldn't say we had a conversation, but we had more gestures toward one than we've had in a couple of months.  There won't be many more conversations, so even the rough outline of one is something positive.

The real headline is that - as I already knew- death from Alzheimer's isn't a neat linear process.  There's lots of backing and filling, and there are crashes that aren't crashes, and there are improvements that aren't improvements.  It is what it is, and it's not going to conform to a structure or to anybody's expectations.  As to causes, it's possible that getting him off the Alzheimer's meds - not to mention the lithium - helped him regain some capacities.  In the course of my conversation with P, she told me she was relieved that the schedule of meds had been reduced almost to nothing.  In particular she was happy to have gotten him off the lithium.  So much for that little science experiment. 

I asked her my new ritual question - seeing him the way he is now, do you think we made the right decision about enrolling him in hospice?  "Yes," she said, "I was relieved to hear you'd done it.  Because that's the only way you can refuse all the tests they'd want to put him through.  I mean, why do blood draws?  What are you going to learn and what are you going to do once you learn it?  There's no point."

I also talked with her about the whole misadventure with Dr. H.  She said she'd heard about it, but wanted to hear my take on it, and once she'd heard it, she said she'd take it up with the administrator.  Good enough.  I mentioned, again, my surprise that they don't automatically shift over to the palliative care physician when a patient goes on hospice.  She thought that was a good suggestion.  I'm still surprised that they've never thought of it.  Wouldn't a protocol like that just be common sense?

In the meantime, we are where we are - same as always, but every so often you get a clear reminder that things are going to go their own way and that, yes, death has a life of its own.  I'm no longer all that willing to work with predictions.  The week or the month could bring just about anything in just about any sequence.  We'll have to ride along  and see where we wind up.

"Weeks or Months"

Hadn't originally meant to visit the nursing home today, but I was in the neighborhood and decided to swing by.  A good thing.  I got to meet with several of the principals - H (the charge nurse), A (palliative care), the hospice nurse, a hospice volunteer who was helping with lunch, others on the unit...

The picture is bleak, but no bleaker than expected.  He continues to decline sharply.  Lung congestion persists - fluid is pooling in the bottom of the lungs.  He's having trouble eating - aspirates food, and can only get down about 60 percent of what's served him ("though that's a pretty good percentage," the hospice nurse said).  They were supposed to have moved him into a geri-chair this afternoon but he seemed peaceful in bed, and we decided to leave him there - no reason to agitate him just for the sake of keeping to a routine.  Concerning that, "your approach is 180 degrees away from most people's," the hospice nurse told me - said most families want lots of intervention, heavier meds, are insistent to know why the patient isn't getting physical therapy and such...  But we're clearly beyond that.  The conversation helped me understand why my discussions with hospice staff seem awkward sometimes - they're expecting me to resist and I don't, and they're not used to having someone agree to start backing off the interventions.

When I got there he was partly alert and producing some word strings.  Twice, though, he drifted off in mid-sentence.  I took that to be the morphine, but A told me it isn't - the sedative effect of morphine wears off after a couple of days.  So what we're seeing is the effect of the Alzheimer's itself.  On the other hand, the jerking arm movements - a new development today - might be morphine-related.  She's going to try him on low-dose Ativan to see if helps.  Most of the other Alzheimer's meds have been stopped, and so has the lithium.  They're using Depakote in addition to the morphine, but that's about it.

He woke up more when lunch came - the usual pattern.  The hospice volunteer - a Navy corpsman from Liberia by way of Ghana - was extremely good with him.  My father came out with a few more sentence fragments.  Some of them seemed appropriate but weren't - when A asked him if he was experiencing any pain, he said, "Oh, yes, I am," in a courtly, courteous way.  He clearly wasn't in any pain.  He just heard something that sounded like it demanded a response, so he produced one from a very small reserve of phrases.  Then there was an arc that sounded more coherent - roughly, he said something to the effect that he's been there for weeks and needs to go somewhere.  Then he fell into his compulsive behaviors - folding and re-folding the bedcovers again, while talking about something that needed to be organized.  The imagery got elaborated so that arranging the bedcovers was related to something on the opposite wall - "yellow" (the color of the wall), which was a place he had to get to.  Then he focused on my visitor's badge and wanted to touch it.  After that he began fondling the lapel and the the inside hem of my coat.  Then he touched my chest as though he was trying to figure out what it was.  Then he took my hand and began to examine it the way you'd examine a foreign object.  Then there was a moment when he looked at me and said, in a distorted way, "Wait... minute... you're... Alan... Ampolsk."  But it wasn't clear what if anything that meant to him - there wasn't any sense of recognition, or that he was connecting the name to a person or to himself.  Finally the combined activity got to be too much for him, and the fascination with the bedcovers and his need to get to "yellow" led him to start stirring and flailing and trying to get out of bed.  At that point, as I usually do, I let the nurses know that he was getting agitated, told him I needed to step out but that I'd be back shortly, then left.

Afterward I was able to take a moment and ask A my unfair question - what's the prognosis, and what's the timeline?  Her answers: bad, and short.  He's crashed spectacularly since the pneumonia, and won't recover any of his pre-pneumonia capacities.  He's lost mobility.  He isn't clearing the fluid from his lungs.  Speech is essentially gone.  I mentioned that, to my amateur's eye, he seemed to be in stage 7, and she said, "I'd say mid-stage 7 - about 7d."  Keeping to his standard pattern, he was able to speak considerably longer into the stage than normal, and that masked the severity.  As to how long, "weeks, or months," she said.  Which is fine, if so.

I was thinking during the visit that today is seven years since my mother died.  My father got the call from hospice and phoned me that afternoon to tell me.  There's the usual temptation to try to make something out of the anniversary date (then she was in hospice, and now he's in hospice) but I won't.  She died and the stress of caring for her helped push him a little faster into the Alzheimer's, and now he's where he is.  It's all natural and absolutely commonplace - just the way things go.

Strangely, there are still compensations on the way.  Today there was the corpsman from Liberia.  There was also the moment in the hallway, outside his room, when one of the patients came back from a doctor's appointment and another patient - an older African-American woman who's in considerably worse shape - went over to her and stroked her and kissed her and covered her with a bedsheet.  Kindness is a remarkable thing and you can find it everywhere, or almost everywhere.  I never saw it in the corporate circles I used to hang out in, but I've come across plenty of it since, mostly from people who don't seem to have as much going for them as executives and leaders do. 

So it isn't all bad by any means.  Still, it's surprising and positive to realize that maybe, after all this time, we're finally getting him where he needs to go.

I'm sure there'll be more bumps, though.  None of this has ever run smoothly, so there's no reason why the end should.  I'll stand by and wait to see what the next crisis will be about.

Stage 7

Hadn't heard anything from the hospice nurse yesterday or this morning, so I went up to the nursing home around midday to see how things were.  Found that he's become exactly what I was afraid he'd become - one of those immobile cases lined up in the hallway in their geri-chairs.  There are always four or five of them.  Today he was the fourth - all the way at the end of the line, where the hall meets the big common dining area, about fifty feet down from the nursing station.

He was lying there in a hospital gown, draped with a sheet, hard asleep, breathing with a rasp, and with his jaw dropped down hard again.  At first I let him stay that way - no point in disturbing him, so I just stood by the geri-chair.  Behind me was one of the dining-area tables, with four patient seated at it.  One of them - a woman who's still aware of her surroundings - caught my eye and shot me a look of pure pity.  It's impossible to describe it except to say that it was fierce.  There are moments of understanding and connection that happen only on this territory, and this was one of them.

I'd showed up earlier than usual - before lunch - and when lunchtime came, one of the attendants woke him up and fed him, in that quiet, kind way that I'd first noticed when I was watching the staff during my summer evaluation visits.  It was good to see it pay off.  There were other staff members who greeted him as they went by - one kept calling him "honey doll," which he must have caller her at some point.  There was warmth there - they like their people.

My father ate surprisingly well - had trouble swallowing at the end and fell into a rasping cough like the one hospice described to me a couple of days ago.  It means pneumonia will happen again soon.

He didn't register me at first - he tends to stay focused now on whatever is directly in his field of view.  Then he did, then he didn't, then he did again, as though he'd never seen me before.  The first time he said something that sounded roughly like "Hi, Alan."  The second time he greeted me in my official capacity, as Mr. Visitor, except that he couldn't quite form the word "visitor."  There was a third moment of recognition later on when a nurse ran past and he said, "Oh, there's mother."

After he ate, I sat with him for a half-hour or so.  During that time he produced a couple of comprehensible word strings - "I've been trying to figure out" and "you've got it, boy" and "a lot of big people here."  He also produced facial expressions that were appropriate to conversation in general - quizzical, amused, intent.  But they didn't seem connected to anything that was actually being said or heard.  Mostly he produced sounds - not even word-like sounds anymore, just sound formations, sometimes vowel combinations and sometimes consonant groups.  There were brief moments when it seemed like he'd made a connection with something or other I'd said, though his reactions could just as easily have been the result of random signals in what's left of his brain.  And after a few seconds he'd lapse out of contact and go back to obsessively working the bedsheet, folding it into a series of shapes and patterns. 

His hands were less clawed than they had been on Tuesday, but there were some signs of contracture in the fingers and knuckles, and less severely in the hands themselves.

In the background there were a few upheavals caused by the other patients - most of whom suddenly seem as though they're in much better shape than my father is.  It's all relative, of course.  There was the usual array of random screams.  Southern Belle came by and was having trouble navigating, and I wound up taking her by the hand and letting her guide me as she found her way toward a chair.  As she got to it she asked me where the other people were, and I said I wasn't sure.  A man at the next table looked up from his plate and glared at me and said, "Why aren't you sure?"  "Well, there's a lot to figure out," I said, and found my way back to my father.

A couple of minutes later, commotion - Southern Belle had fallen just behind me.  Confusion among the attendants, who wanted to help her but aren't allowed to - falling is a protocol-intensive event (I guessed right about that) and only a nurse can intervene.  One did, and they got her up and seated and checked out.  No harm done.  I suppose some relative of hers will be getting the usual phone notification, the same as they gave me.  Still more reassurance that falls are all in a day's work and generally aren't anything for me to worry about. 

So I went back to sitting.  Unlike the past couple of visits, where he's been extremely agitated from the beginning, this time I felt like I was doing him some good by sitting there with him - just being present, and sharing a small amount of time.  So I stayed a little longer than I usually do.  But toward the end the agitation was beginning to set in - he started to flail around in the geri-chair and move the sheet aside as though he wanted to get up.  Once again, I think it's a reaction to the sensory overload caused by the visit - it's more than he can process.  At first I told him to relax - that there was no more work to do, that the rest of us would do the work now.  That's something I also told my mother toward the end.  But of course he couldn't really take that in, so finally I told him to try to rest, and that I'd be back soon.  I made sure the nurses were aware I was heading out, and then I left.

And there we are.

Taking everything into account - the speech failure, the immobility, the random reactions, the hand contractures - I'd have to say that, to this informed amateur at least, it looks like he's in the early phases of stage 7.  If so, it started the same way stage 6 did - with a sudden event (surgery then, pneumonia now) that throws him... and then he doesn't recover completely from it.

For as long as I've known he has Alzheimer's - more than three years now (there were five years before that when I thought he had some other, more benign dementia) - I've read that linked description of stage 7 and dreaded it.  I wanted him to avoid it at all costs - really - at all costs.  But he's in it now, and there's no point in dreading it, or having any particular emotion about it.  He didn't avoid it, and it's not going to change, so now we'll just deal with it.

But given that it's going to get worse - we're just at the threshold now - I'll continue to hope that it doesn't last long.  A few weeks ago I had the abstract notion that maybe it'd be best if he didn't survive the year.  Now things have changed again and the abstract notion has turned into a concrete desire - I'd really like to see him get out as soon as possible.  No doubts anymore - better pneumonia than stage 7f. 

I had the sense looking at him today that it might be just a matter of a few more weeks.  But as usual, we'll have to wait and see.

His Death Panel and Other Entertainments

Headlines first: he's still with us.  I had a brief conversation Friday night with Dr. M, who seemed to feel that his clinical signs looked a little better.  Then no news 'til yesterday evening, when the hospice nurse called me in that cheerful way they fall into, to tell me that my father was doing wonderfully and had called her "kid" and asked, "Hey, kid, is there anything I can do for you?"

In other words, the antibiotics did the job.  He seemed to be clear of pneumonia as of this morning.  Once again I'm left wondering about Dr. H and his "dead in 48 hours" routine, but that's neither here nor there now.

This morning I went up to the nursing home for the first time in a week (I'd stayed away because of my own cold/flu thing).  I met briefly with the hospice rabbi, who was nice and a little sad.  Hospice clergy is often an entry-level assignment and the rabbi is a little older than many, which means she's probably a career-changer handling a tough gig.  She did OK with my Jewish-Buddhist hybridism, and maybe a little less well with my caution that it's fine to have her visit my father, as long as she doesn't identify herself as a rabbi - the rabbinate makes him violent.  She heard that and told me her schedule was very busy but maybe a volunteer visitor would be a good thing.

The main event of the day was the treatment conference - my second since my father was admitted, and the first one involving the new palliative care/hospice team.  I suppose that makes it an end-of-life planning conference - one of those death panels you've heard so much about.

My first question to the group was this: did we do the right thing?  If he's pulled through the pneumonia, does that mean he's still hospice-appropriate?  The answer, without hesitation, was yes.  He fought off the pneumonia but he hasn't made it back to baseline, and probably won't.  He's no longer able to walk, even with the walker - he now moves between his bed and a geri-chair.  He's less coherent (hard to believe, but true) and more easily agitated.  It's possible that he'll recover more in the next couple of days, but the overall trajectory is still sharply downward.  The odds of a pneumonia recurrence are high - his swallowing is worse, and they've just had to order his liquids thickened still more to keep him from choking on them.  But even absent the pneumonia, he'd qualify for hospice purely on the basis of the Alzheimer's.  And the hospice representatives said they prefer to be on board sooner - they say they can do more than if they're called in right at the end.

We went down the list of what will change in his treatment plan.  Short answer: not that much.  They've started low-dose morphine, and reduced but not eliminated his Alzheimer's meds - the Depakote, Neurontin, Seroquel and to an extent lithium are still needed to control his agitation.  Over time he might transition fully to sedation, or he might not.  They'll drop certain protocols - for example, no need to weigh him now since weight maintenance isn't a goal.  A, the head of palliate care, raised the question of whether we want to discontinue behavioral assessment.  I voted to keep it in place for now.  As long as he has the capacity to be agitated, we'll have to manage that.  Also, I want to keep P on the scene - she "gets" him in a way the others don't (for example, isn't taken in by his surface cheer).  It's a premium service, but until such time as he's completely unconscious, we'll continue it.

I had a chance to review and revise the directives.  They were already decently clear.  Antibiotic treatment had been marked "other - consult with son/power of attorney."  Given that, you'd think they would have consulted before starting him on the antibiotic treatments last week.  But they didn't.  Again, no matter.  I altered the order to "no antibiotics except for comfort," and also changed the order for medical interventions from "consult first" to "none."  That should remove any last trace of ambiguity.

We wrapped up in about a half an hour.  My last question to them was whether my reactions, preferences and directions were in the normal range for families in hospice, or at this stage of Alzheimer's.  Answer: yes.  As usual, everything feels like it's happening for the first time but there's company on the road.

After we broke, I went downstairs to look in on my father, together with the hospice nurse and the hospice social worker.  We found him lying diagonally across his bed - he'd been trying and failing to lift himself out of it.  He looked pale and stricken - much worse than last week - and his hands and feet were clawed in a way I hadn't seen before, though some of that could have been the result of the exertion.

He recognized me, sort of, but only after he was prompted.  He was compulsively verbal, same as before, and most of the speech was completely indecipherable.  A few phrases came through.  He was concerned with finding something for me in the apartment, and also with getting word to his mother.  I told him I'd take care of that, and also that he didn't need to find me anything - there was no need for him to work anymore.  He relaxed a little when he heard that, and a little more when the hospice nurse took his hand and stroked his shoulder.  But it didn't last.  Within a few minutes, the task of holding a conversation with three people got to be too much for him, and the agitation set in again.  One of the staff came in to help him move up in his bed, and he started to scream and curse (concerning this: A thinks he might have osteoarthritic pain, but my take is that the pain is psychological - moving him amounts to loss of control and that equals distress).  The screaming and cursing alarmed the hospice people, who like all the newcomers except for P, had been charmed by how courtly my father can be, even now.  But once they saw the outburst they went running for more staff support, and stopped wondering about why he needed his current array of meds. 

After the staff got him settled, he quieted down again, and was able to resume a sort of conversation.  He began obsessively folding his comforter, in a way that seemed to represent something - he kept commenting on it (roughly, "do you think we should do it like this?") but I couldn't figure out what, if anything, it meant.  After a few more minutes the agitation set in again - once again, this seemed to be the result of too much stimulation and sensory overload.  We all left.  The hospice nurse said she'd visit again a little later, and I explained to them that I'm mostly trying to limit my visits to 10 minutes because that's as much as he can take.

And there we are.  Crisis has passed, it's still not clear the extent of the damage, and as usual, we're more or less stable and waiting for the next lurch.  That could come days or weeks or months from now, or he could just keep sliding steadily out from under us.  At the end of the day - after seeing him clawed and distressed and struggling to deal with his visitors, I'm in no doubt about the decision to move him to hospice, and hopeful that the next time, the protocols will be clear and we'll get him where he needs to go.  In the meantime it's out of my hands - exactly where it's been all along.

Firing Dr. H

Dr. H is off the case.  It wasn't easy.  The nursing home wanted me to contact him directly.  I balked - told them I didn't choose him, they did, so why task me with getting rid of him?  Then reversed myself, tried to reach him and couldn't (he doesn't seem to have an office and didn't call me back after I reached him on cell).  So I finally faxed my authorization letters to the nursing home - one removing Dr. H, the other engaging Dr. M - and left it at that.

I have to say that this has been the first major glitch in my nursing home experience.  It's not surprising that something should go wrong.  All the same, it strikes me as an odd protocol that you transition a patient to hospice, but don't assign him to a hospice physician.  It's even stranger that you keep him assigned to a physician who's actively opposed to hospice.

But maybe this is more common than I realize.  In my mother's case, things were different - when we moved her to hospice, the hospice was in a different physical location and had its own fully dedicated staff.  So it was a given that the hospice physicians took over his care.  Here it's more ambiguous - he stays where he is, and the hospice isn't an institution - it's an outside agency that comes in alongside the nursing home staff.  Nevertheless, it seems like they're missing a step.  The hospice experience should be a hospice experience and nothing else.  At minimum it should be conflict-free to the extent possible.

As far as my father is concerned... we're now at the 48-hour mark, that is, 48 hours since Dr. H told me he'd be dead in 48 hours unless IV antibiotics were started.  To my knowledge, everyone is still alive.  I realize that predictions are an inexact science, but I could have lived without the extra grief. 

As of this morning, oral antibiotics were stopped as well.  I haven't heard any updates, but I wouldn't be surprised if my father pulled through this episode.  As I've said, he's fundamentally strong.

If he does pull through, I'm thinking that a treatment conference might not be a bad idea.  I get to call them whenever I want to, and given that we've got an almost entirely new crew on the job, it might be useful to have everyone sit in the same room and talk about where we go from here.

Will go arrange that now.

LATER: Dr. H finally called me back.  He left a long voicemail, telling me that it was really important to insert a gastric tube - "He's still not eating, and if we take him back to the nursing home the same thing is going to happen again."  I had a few seconds of confusion - where exactly is my father and why does he have a gastric tube? - until I realized that Dr. H thought he was talking to someone else about another patient.  I called him back and he confirmed that, and I told him I was bringing in Dr. M and we wished each other well.  He told me he knew it was difficult and said "God be with you" and I said, "And also with you."  I don't think he liked that but in any case, we're done.

Treatment conference is now set for Tuesday morning.

Pneumonia, Hospice, and Dr. H on God's Will

No, the routines don't last.  Nothing is stable on this territory.

Sunday night, a call from the unit.  My father has developed a fever.  They're monitoring it.  Nothing for me to do but to wait for more news.

Monday night, the unit calls again.  Chest x-rays have come back and my father has pneumonia.  They're treating it with antibiotics.

My first reaction - a spike of hope at the word "pneumonia" and confusion about why they're treating it.

You need to understand that years ago - I remember this vividly - my father told me about the older generation of physicians and how they used to refer to pneumonia as "the old man's friend."  Some apparently still do. 

For years - even back when he was in better shape - my hope was this: I want him to run into something other than Alzheimer's that takes him out, as quickly and painlessly as possible.  Dying from Alzheimer's is far and away the worst case.  I look at the other patients on his unit - not all of them, but the immobile, unconscious, bedridden ones - and wonder what the point is of maintaining him so he can wind up like that.  My reasoning runs along these lines.

And here they are trying to cure him?

I asked the unit staffer if there was someone I could speak to about the treatment protocols.  There wasn't, but he suggested I talk with the charge nurse first thing in the morning.

So yesterday morning the conversations started.  The charge nurse was sympathetic and sent a message to A, a senior nurse who works in the palliative care program - a nursing home offering that isn't exactly hospice (its patients don't qualify) but that uses some of the same approaches.  A agreed to come onto the case and work with me on a course of treatment.  Reviewing my instructions - the ones I gave at the initial treatment conference - we weren't able to come to any immediate conclusions.  I'd refused extraordinary interventions and pneumonia vaccine, refused hospitalization except for pain management, but asked for consultation on most other matters, so I'd be able to judge on a case-by-case basis.  In this case, IV antibiotics would count as an extraordinary treatment (they'd require hospitalization, and possibly intubation as well).  But oral antibiotics are another matter.  They won't necessarily help (according to A, my father's white blood cell count was high enough that in the absence of Alzheimer's, he ought to be hospitalized) but won't necessarily hurt, either.  In the end, after I'd talked her through my viewpoint about keeping him alive to die of Alzheimer's, she suggested that we arrange a hospice consult in a couple of days, assuming he pulls through the pneumonia.  She also thought that on balance it might make sense to discontinue the antibiotics - she'd talk to his physician about that.

I went off to have some oral surgery done - it was that kind of day.

A couple of hours later I was back at home, wondering how much Tylenol I could take without doing myself real harm, when the physician, Dr. H, called.  Dr. H is an internist who's been managing the general medical side of my father's case since we brought him to the nursing home.  What followed was the single most bizarre conversation I've had in the six-plus years I've been looking after my father's Alzheimer's.

Dr. H told me forcefully that he wanted to treat my father with IV antibiotics, hospitalization and all.  "If I treat him, there's a 50 percent chance that I can pull him through.  If I don't, he will be dead in 48 hours. "  Dr. H explained that by treating, and setting up the 50 percent odds, we would truly be putting the matter "in God's hands - and I mean that in a very religious sense."  He also told me that he himself had Parkinson's, and that that colored his viewpoint.  He said that letting my father die of pneumonia would be equivalent to letting him die of a headcold.  "It's not like we're talking about intubation [we're not?] or some other extreme intervention - it's a simple thing that could bring him back."

Bring him back for what?  I told him that letting him die of a headcold seemed merciful to me.

I said that I was also proceeding from a religious viewpoint (true), and asked what shape my father would be in if we pulled him through, explaining that in the last two visits, he seemed profoundly disoriented and had a hard time recognizing me at all.  "Oh, his mind is gone," Dr. H said.  "That won't come back.  But his heart is very good."  "So we're trying to preserve a heart?"  I said.  "I'm sorry, but that makes no sense to me."

All I can see in my mind's eye is my father two years from now as one of those bed cases, all because Dr. H went all out to "save" him. 

Dr. H said he needed to talk to a patient, and asked me to call back in 90 minutes with a decision on the antibiotics.

There followed 90 minutes of near-panic.  Here I am, suddenly under the gun, having to decide in the next hour and a half whether my father dies in the next 48 hours or not, or so it seemed.  I placed a couple of calls to A, talked to my wife who talked to her sister (both favored a fast humane exit), even tried to call Dr. B, my father's New York geriatrician.  Her office suggested I send an e-mail and they'd alert her to it, so I wrote one.  Finally I called A again and the front desk at the nursing home had her paged and she came to the phone.

We went through it all again.  She clearly didn't want to give too much away, but allowed that Dr. H "wasn't comfortable" with hospice or end-of-life issues - which, as a side note, raises a question in my mind about what the guy is doing practicing on the dementia unit of a nursing home.  A's suggested compromise was this: continue the oral antibiotics for the moment, on the grounds that they're unlikely to have much effect but will keep Dr. H satisfied, then set up an immediate hospice evaluation.

I agreed, got off the phone right at 5, and called Dr. H.  I told him I wanted no IV antibiotics, and oral antibiotics only pending a hospice evaluation, and could he put in the order for the hospice consult.  He agreed.

At 6:30 I drove up to the nursing home to meet with the hospice admitting nurse.

She and I had one of those good conversations that you have with talented hospice people.  I took her on a quick but thorough tour through my viewpoint about keeping my father alive (it gets faster and more focused the more I do it).  She agreed with it.  She took me through some expectation setting, and had me sign a sheaf of forms.  I've been here before - went through it with my mother - so I'm familiar with my reactions - the way the emotion sits just behind the efficient, cordial discussion, and breaks out occasionally, but not too much.  She has these conversations for a living and seemed to understand.

We went downstairs to see my father so she could run her evaluation - a formality since she'd already admitted him based on the nursing home's request (she said they were good at selecting their cases).  He looked awful - pale and slumped over to his right, asleep, with his jaw dropped wide open and set hard.  He was wearing a nasal cannula and was hooked up to an oxygen tank.  It was an end-of-life look - not technically (the nurse pointed that out) but he seemed like he'd crossed a threshold and was getting beyond us.  She took vital signs, ordered low dose morphine for respiratory distress, and told me I'd be hearing from the hospice nurse who'd be managing the case.  She explained that management now passes from the nursing home to the hospice agency - my father will stay at the nursing home and the staff will continue to care for him, but hospice will direct the care.

I came home in a daze with my folders of information - yes, have been through that part of the drill, too - and tried to assimilate it all.

Dr. B helped.  While I was in the hospice meeting, she sent me an e-mail that - in contrast to Dr. H and his messiah complex - was a model of how a physician ought to behave.  She didn't take a viewpoint one way or the other, but instead laid out the facts as she saw them: that my father would have repeated episodes of pneumonia, caused by his inability to swallow properly and clear fluid from his lungs, and that one of the episodes would kill him.  She said she'd support any decision I made.

That should have put a period on it, and as of this morning, I should have been working smoothly with hospice.  But of course, nothing goes that way.  Already, as I was leaving the nursing home last night, there were signs of trouble - we met A briefly and she suggested to the hospice admitting nurse that we raise the question of discontinuing the oral antibiotics, "but not 'til tomorrow - Dr. H isn't on the same page as the rest of us and it'll take him time to come around."  I wondered to myself in passing whether it was a good thing to have to walk on eggshells around the physician of record, but I was too tired to make anything of it.  There were other comments to the effect that Dr. H "didn't get" hospice or palliative care, not nearly as much as Dr. M, but that we could find a way to work with him.  Again, I took it in but didn't react.

Then, as I was writing this post, I had a series of phone calls from S/2, the hospice nurse now assigned to the case.  The first call was a status update - my father is sleeping comfortably, was able to eat, and they'll continue him on the oral antibiotics through January 21.  I asked whether there'd been any discussion about stopping the antibiotics, and she said she'd check with Dr. H about that.  She told me she had the impression that continuing the antibiotics was a compromise between the family's's wishes and what Dr. H wanted to do. 

I asked her why, exactly, we were trying to compromise in order to make Dr. H comfortable.  His comfort isn't what's at issue here - it's my father's comfort.  I explained in detail - since this was another first conversation - what my father's history was, what his current condition was, and what he would have preferred.  She told me that she agreed completely with my viewpoint, and that most families in this situation, faced with pneumonia, opt not to treat.  But she had to clear it with Dr. H.

She called back to say that she'd spoken to Dr. H - who had declared that he was completely uncomfortable with the family's wishes and that he was taking himself off the case.  To which I said, fine - let's move on and work with Dr. M. 

Except that a half-hour later I got a third call - she told me that Dr. H had reversed himself, ordered the antibiotics discontinued, and would continue as my father's physician.   At which point I said, no, he won't.  Enough grand opera.  The chances are that there are going to be other tough decisions to make as we go through this, and I need to work with a physician who basically understands my viewpoint and can be calm and professional about it.  I don't have to agree with him all the time - in fact, at a certain level I'm grateful to Dr. H for his strong pushback, since it gave me a chance to test and sharpen my own thinking.  But there has to be a cool, objective working relationship, not one that's swamped in the doctor's imperatives and inhibitions and emotions.

So, final act for today - I called A and left a voicemail requesting that Dr. H be removed from the case and replaced with Dr. M, or someone else of their choosing.  A necessary formality - I'm healthcare proxy and I'm the only one who can make the request.  Now it's in and we'll see if we can't get somebody new in place tomorrow.

You always expect this to be a solemn process and it never is - there's always massive confusion and some sort of blood feud.  At least we're having ours early.

There's also the underlying reality that my father might be dead tomorrow or the next day - or might pull through and go on for weeks or months or years.  I'd like to be able to process that but you never get the chance, except on the fly.  So for the moment I'll try to get us from today to tomorrow and see how it goes.

For the moment, here we are.

New Year, New Routine

A new year, a new routine - I took a break from work and drove up to the nursing home.  Found my father sitting on a chair in an unoccupied room, pulling obsessively at the lining of a small trash can he'd placed on the floor between his legs.  He looked up and seemed to recognize me, at least as someone significant.  He launched into something resembling a conversation.  The facial expressions were familiar, but apart from one moment, when he offered me coffee (there isn't any on the unit), he produced only word-like sounds in sentence-length cadences.  After about 15 minutes he said something (I think) to the effect that there was some object or other I was supposed to get from the outside.  I took that as a cue and told him I was going to go get it and I'd be back.  I left.

They tell me he's somewhat better adjusted to the lithium, though they weren't sure whether he'd had the full dose today.  P is on vacation for a few weeks so at the moment I don't have reliable sources.  But on the evidence he seemed calm, and no more compromised than you'd expect from the disease itself - which is pretty massively compromised, of course, but you learn to read the difference between the drug effects and the fundamental damage.

Last night around 7 I had a call from a member of the unit staff, reporting (again) that he'd fallen, this time after colliding with another resident.  Thats' the second fall since he got to the nursing home.  Confirmed now that the phone calls are part of the reporting requirement, so I'm learning to take them in stride.  Once I heard there were no injuries, I relaxed completely and went on with my evening.

Routines don't last any length of time in this business but for the moment, we seem to have established a good steady pace.  After all the upheaval last fall, I'm fine with that.  And it's good to know that if (when) things break loose again, the professionals will be there to deal with it.

For now the verdict on 2010 is, so far, so good.