Dementia Nights

Ghost Images

A harsh visit.  Doing it on four hours' sleep didn't help, but that was just one of the factors...

His speech on the lower Seroquel dose is much more coherent.  But his obsessive tendencies are back in full force.  He was always obsessive and often anxious, so we're talking about a core capacity, but the disease and the drug make it worse.

There was a brief moment at the beginning of the conversation when he played with the idea of moving to Washington.  He's not at all clear on where Washington is - he sometimes calls it Westchester and sometimes thinks it's in New Jersey (where I lived briefly after I left Manhattan but before I went to DC).  Sometimes he points downtown when he talks about it, and often he says that he's glad when I'm there because it means I'm only a few blocks away.  Nevertheless, he was interested in what it would mean to live there.  Could we see each other more often?  Could he get a job in my business?  Yes and yes.  I was relieved because for a moment I thought that he was opening a window I could use to get him accustomed to the idea of a move.

It didn't last, of course.  It wasn't going to.  The idea is much too strange and too threatening.  Very quickly he reversed himself - talked about how good the people are who care for him, and his doctors are right there, and the park is right there - and he decided that the best thing would be for me to move to New York, where there's more work for me and we could be together all the time.  He went on in this vein at very high energy for the next four hours.

It's understandable why his solution is to have me move home.  What he's really telling me is that everything is strange and threatening and he wants it to be familiar and he wants me to be around.  There are limits to what I can do for him - the nursing home will mean slightly more togetherness but not under circumstances that he'll like.  It's really the least bad of many bad options - but the least bad is still bad.

My first reaction to him was awful.  As the riff went on and got more elaborate (my sister [wife] can get quit her job and get a new one in New York, there are lots of them; my [nonexistent] children will like having the arts all around them; they're doing great things with this [he says, hiking up his pants leg to show me his knee for reasons I don't understand)...  As the riff went on I could feel myself getting more resistant and tense and angry...  feeling trapped and wanting him to stop the obsession and wanting to push him away and not have to think about giving up my life and moving in with him...

I haven't referred to my meditation practice recently.  In fact it's been a shambles - my schedule is too messed up and the fatigue has been blinding and I haven't been able to keep it up at all.  Last week I began to get back to it.  The first thing I realized was that the blinding fatigue is a chief feature of my meditation because it's a chief feature of my life, and I learned to sit there nodding off and coming back, nodding off and coming back...  By early this week I was back on a (mostly) regular schedule and yesterday I was able to sit for an hour straight, which is unusually long for me...

The value of mediation, in case you're wondering, is this - in the middle of my father's riff and my angry/anxious reaction, I was suddenly able to step back and see that I was, in fact, having a reaction.  Rather than taking it any further, I was then able to just watch it without acting on it and let it play out on its own.

What came to me very quickly after that was the insight that I wasn't reacting to my father the way he was today.  I was reacting to him the way he was years ago.  HIs obsessions and anxieties used to make me anxious and angry and here I was again, letting a lot of habitual neural circuits kick in.  And what I was reacting to was the exercise of his habitual neural circuits, which are still in place and are working overtime to solve a problem in spite of the fact that his cognition is so damaged that he can't conceive of the terms of the problem or bring any information to bear.  It could be argued (a good Buddhist would argue) that there weren't actually people in the room - instead there were two interlocking sets of conditioned responses, his obsessive one and my resistant one.

Understanding that, I was able - thankfully - to let my reaction slide away and just let him go on (which he did, nearly 'til sunset).  It doesn't make any difference.  He works at solving the problem, which maybe helps him deal with some of the terror and confusion.  And as for me, I'll wind up doing what I have to do anyway, which is to move him to a nursing home, and all the talk in the world isn't going to change that.  My reaction, if I'd vocalized it, would have accomplished nothing.  So the point of mediation, in a nutshell, is this: it kept me from making a bad situation somewhat worse.  I'll take that as a plus.  Nothing mystical in play here - wasn't looking for that, didn't get it.  Will settle for slightly less violent, slightly less bad.

From time to time he went off into different subjects and that produced interesting moments.  He looked at a photograph of me - a formal portrait photo that was taken when I was 10.  He had no idea who was in the photograph.  But he remembered that it was done in the Bronx, by a couple who ran a studio (true), and that his mother (actually my mother) had arranged it.  At another moment he remembered a moment in his mother's final illness - coming home from school and finding her on the floor in a particular place near the doorway to the bedroom.  In fact what he was remembering was my mother's last day at home.  She was overwhelmed by her cancer and while getting ready to go to an appointment with Dr. R., fell in a sitting position in the bedroom doorway.   My father called me to come over because he wasn't able to move her on his own.  I helped him get her onto the bed and we waited for the paramedics to come.

The two memories, like his obsessive problem-solving, are ghost images.  The facts are gone - or so fragmentary and distorted that they might as well be.  But there's an emotional component - the drive for a solution, the connection with the photograph, the images of that morning with my mother, which was traumatic - that stays in place.  The emotions are such that under certain conditions they're able to pull remaining information together - not into a full memory but the outline of one.  No details, or alternate details, but the shape is there.

The basic strangeness continues.  Word distortion ("tooth dirty"/"two-thirty") is still there.  There was a moment when we were sitting facing each other - him with bookshelves behind him and me in front of a mirror reflecting the bookshelves - and he pointed out the bookshelves behind me (in the mirror) but had no idea there were any behind him (the real ones).  Then there was a new pattern when I moved from one room to another - he'd follow, look right at me and say, "Where are you?  Where have you gone?" It's as though his confusion prevented him from seeing me.  More accurately, there's a continuing, progressive breakdown between basic sensory input and his ability to interpret it or make sense of it.

After I left I was able to walk for a while down Broadway on the Upper West Side.  I grew up there and there's a huge sheaf of memories - it's sort of a palimpsest, and it's possible for me to walk there and go off on long Dr. Manhattan riffs ("It's 1964.  My father is taking me to lunch at Starks' Restaurant.  It's 2009.  I'm leaving his apartment after an Alzheimer's visit...")  So I could go on about ghost images in that context, too.  But in fact I didn't do any of that.  I was too tired and it was enough just to walk and take things in the way they are now.  Being in the now - another benefit of meditation, right?

I wrote most of this on the train home last night.  Before I finished it I went up to Rockville this afternoon to see the elderlawyer.  I'm just back from that and I'll write about it as soon as the brain swelling goes down.  She told me my case is "not the most difficult, but more difficult than most."  I suppose there's some comfort in that, or at least a distinction.  More on that tomorrow... or over the next couple of days.  Tomorrow I've got the follow-up visits with the nursing homes and I'll probably have something to say about that, too.

It's definitely getting lively again.

Task List

A full schedule over the next few days.  Tomorrow's a New York visit - the first one in more than two weeks.  Friday afternoon I meet with the Maryland elderlawyer.  Saturday afternoon I go back for a second look at Nursing Homes 3 and 4.  My wife will come along as an objective (or at least fresh) witness.  My plan was to make a decision and start an application on August 1.  I'll be close, if not exactly on target.

I've kept busy with other research.  Most recently, I've been looking over the nursing home statistics at the Medicare website - they have a very useful sectionthat presents nursing home ratings and allows you to compare them.  My two finalists and the runner-up (Nursing Home 1) all come off well, but there are subtleties.  Nursing Home 3, the House of Llamas, my favorite, is rated slightly below average on the quality of its nursing staff.  Looking at the detailed statistics, it seems that they staff much more heavily with Licensed Practical Nurses, as opposed to Registered Nurses.  RNs are much more highly trained and have additional responsibilities.  Nursing Home 4 gets an above-average rating for nursing staff, and their RN staffing is heavier.  I'm not sure if that makes a huge difference in the quality of Alzheimer's care - it might matter more in a patient with multiple illnesses, but my experience has been that in Alzheimer's, intuition and creativity count for a lot more than formal education and credentialing.  

Also, healthcare statistics can be hard to interpret.  Several lifetimes ago, I worked on the public relations staff of a New York City voluntary hospital that wanted to publicize its very low mortality statistics for cardiac surgery.  I called the New York State Department of Health for more details and spoke to a nice, patient man who explained to me that that publicizing the numbers wouldn't be a good idea, because low mortality figures in cardiac surgery aren't necessarily a good thing.  They might indicate that the hospital wasn't taking enough risks - that it might be goosing its numbers by refusing to operate on patients who were sicker, and therefore riskier, but who on the whole could still have benefited. 

So it's hard to know what the nursing quality ratings mean in practical terms.  I've asked D to help me interpret them, and I'll ask about them directly during the Saturday visits.

Meanwhile, my father continues to do well (within limits) on the lower Seroquel dose.  The weekend was bad - E was off and the agency sent one of their regular untrained, unmotivated attendants.  When I called Saturday, he was enraged (I'm not sure about what) to the point where the attendant couldn't get the phone in front of him.  Sunday was a little better - he was still angry but able to talk, and he began to calm down when I told him that E would be back Monday morning.

Yesterday E and M got him to the dentist to have his tooth extracted.  They report he was only a little resistant.  Afterward he was confused about what had happened (he said there was "ripping and tearing") but not too agitated and not in too much pain.  The dentist said the tooth was "very infected."  I'm sure that'll be the end of the ear pain.  Again - it'd have been nice if the doctors had been able to put two and two together a few months ago.  But that's not what doctors do.  One of them specializes in the first "two" and another specializes in the second, and there's no reason to share information about them, much less add them up.

All in all, things seem relatively quiet - probably the last time they'll seem that way before I pull the house down around him.  According to the task list, that starts happening next week.  So if today's peaceful - and it is, so far - that's fine, and I'm going to leave it that way.  Because when the work starts again, it's going to be off the scale.

Updates soon...

Seroquel, More or Less

A call from M Tuesday morning - she's decided to cut his Seroquel dose in half, back to the old level.  It seems he got agitated nearly to the point of violence last weekend - both E and E2 had a hugely difficult time with him.

I didn't pick up on the agitation or the violence, but over last weekend he was hugely incoherent, which is saying something given his current standards.  Saturday night he was producing recognizable words, but in random strings: "Did you fortress the top barrier?"  It was a little like that anti-drug commercial where the mother tries to talk to her daughter about drugs but can only come up with word salad.  Monday night he was foggy and wanted to get off the phone quickly because he was trying to order sandwiches for us.  Tuesday night - after the first day on the lower dose, he was almost coherent - recognized that I was in Washington, "where the government is."  Coherence is relative, of course - he also thought it was wonderful that I was in the same city as Alan and we could live and work together.  And by yesterday morning he was back down - not all the way into word salad territory, but not retaining much if any information.  He wanted to know if I was going to visit that afternoon and I told him I couldn't because of jury duty, and he repeated sounds that were roughly like "jury duty" with no idea of what they meant.  My fault for being too abstract - the compulsion to explain dies hard - but more proof that whatever the ups and downs, the trend is downward.

I have to remind myself also that there was a reason that Dr. B wanted him on the higher Seroquel dose in the first place.  He was getting agitated on the old dose, so we'll have to see where he lands now.  More pressure to keep the nursing home process moving forward.

Concerning that - I spent the non-jury-duty part of my week on the Medicaid paper chase.  The local elderlawyer sent me a checklist of documents to pull together for our first meeting.  It amounted to a two inch-thick sheaf - tax returns and trust agreements and brokerage statements and proof of transfer dates and such.  In an hour or so I'll go up to the UPS store and pick up the copies and slap a cover letter on them and send them off to her.  Current plan is to meet with her late next week or early the week after - and in the same timeframe, to do follow-up visits to Nursing Homes 3 (llamas) and 4 (nice setting, aviary).  That way, I should be able to start writing an application by the first week in August.

It's as daunting and overwhelming as ever, but somehow it seems that the steps are getting done.  A long way to go yet - admission, move, cat relocation, closing the apartment.  But first things (first three dozen things) first, and with luck, the rest will follow.

At least that's the plan.

Cognitive Meltdown Continues; Nursing Home Search Narrows

He wasn't any better in person - he was every bit as bad as I expected him to be.  Hour after hour of weird conversational loops and bizarre pivots and sentence-over-sentence memory failures.

I was right about the auditory problems - there's a real disruption going on there.  The clearest example (among many) came when his dentist made a housecall.  She's part of a very good service based at Mt. Sinai that does dental home visits for the elderly and homebound.  In the middle of a quick cleaning, she said, "Look at this tooth - it's dirty."

He said, "Two-thirty?"

He's doing homonyms.  He gets the sound but can't work out the meaning - he tries for the meaning but gets stuck in the sound and ends up with something similar that's totally off base.  Tooth dirty, two thirty... the latest frontier.  It's a little like how the Hekawi got their name.

He liked the dentist (she's attractive) and sailed off into a long reminiscence about how he'd known her when she was little (he first saw her six months ago) and wanted to fix her up with the young surgeon (cat sitter) who'd visited earlier...

She found something interesting.  Toward the end of the exam she called me over to show me one tooth that she thought was bad.  "It's loose and it's got the beginnings of an infection," she said.  "It isn't causing him pain so I don't want to do anything about it, but as soon as it starts hurting I want to pull it."

I said that was fine, then thought, wait a minute.  Where's the tooth?  It's the number 2 molar - on the upper right, in the back, just ahead of where the wisdom tooth would be.  In other words, it's in exactly the right place to produce a radiant pain that - if you're not thinking clearly or interpreting well - you could easily mistake for an earache.  That's what his persistent ear pain has been about.  It's a toothache.

I told her and she immediately gave me a referral to a dentist who can do the extraction.  She also said she was amazed that none of the internists or ENTs who checked out the ear pain ever bothered to look in his mouth.  I'm amazed, too... but then again, I'm not.  It's just another episode of modern American medicine in action.  Everybody deals with his piece of the puzzle - his own organ system.  Nobody bothers to think about how the pieces go together or how they might be affecting each other in the big sloppy matrix otherwise known as a person.  I'm an ENT?  I'll look in the ear, the nose and the throat.  Mouth?  Not my territory.  So the only way you find something out is by accident.  It's pure luck that I was there and happened to put two and two together.  But at least now we know what to do.

The dentist prescribed an antibiotic and a mouthwash and gave detailed instructions to E, who looked sullen and clearly wasn't listening.  I think she felt that she was being criticized for not taking care of his mouth (which she is - she's been relying on him to brush, which is like relying on him to be an astrophysicist).  The dentist picked up on this and took me aside and pulled me into the hallway as she was leaving and asked me if my father was still OK with the arrangements, being on his own in the apartment with the attendants.  I said, no, you can see it's not working, and told her where I was on the nursing home search.

I came back in to find that my father wanted to demonstrate something about the cats.  A while ago, Babe, the sweet one, took to sleeping on a love seat in the corner of the dining room, between two cushions.  My father had decided that she'd like it even better if he put her there, instead of waiting for her to go there on her own.  Then he forgot how the process is supposed to work.  So I came through the door and there was my father, holding Babe by the hips, with the rest of her dangling down toward the floor.  Needless to say, this made her cross.  I had visions of her turning around and mauling my father (and thought to myself that this would solve some problems but create new ones).  But she was willing to let herself be hoisted onto the love seat, and to lie there while he started piling cushions on top of her.  She stayed in place patiently for about a three-count before she took off for the living room.

And I thought, OK, that's it, I've got to pull down this tent and get them all out of there before somebody gets hurt.

The good news as far as that's concerned is that the nursing home search is narrowing down.  I met with D yesterday and we decided to eliminate the group homes as a category - they're clearly not up to handling him the way he is now.  Then we got rid of Nursing Home 2 (borderline dangerous) and Nursing Home 5 (big, impersonal, uneven).  Nursing Home 1 stays in play but she thinks it's a bit institutional - does good consistent patient care, but isn't willing to improvise or bend.  That leaves Nursing Home 3 - the Nursing Home of the Baby Llamas - still in the lead, and Nursing Home 4, owned by the same family, close behind.  They'll get the highest priority during repeat visits.  I think I know what the choice will be, but I'm going to try to stay as open-minded as a closed-minded person can be.

Once he's in place, D and her firm can come in and help manage things, the way M has done in New York.  During the application process, the bulk of the work falls to the Maryland elderlawyer.  I'm still compiling documents for her but should be done shortly.  I don't want to think yet about what will have to happen to complete an application and managed the transfer to Maryland Medicaid.  D suggested at one point that a nursing home will want to see that my father has assets, so he can pay his own way until Medicaid kicks in.  That might mean that the transferred assets will have to be transferred back, so they're in his name.  Then they'll have to be transferred out again so he meets the Medicaid standards.  I heard that and thought, there's no way that can happen, they'll just be able to look at the transferred assets and see that they're being used to support him, they won't require a return transfer, no, no, no, they won't, I can't hear you, I can't hear you, I can't hear you....  Then I felt the circuits snap in my mind again and just basically shut down and everything was peaceful...

Experience suggests that the worst case will play out (it always does) and I'll have to run a reverse transfer and then an outbound transfer.  And of course I'll do it.  I've been doing things like this for years.  What's one more?

In our conversation about nursing homes, the dentist had an interesting recommendation.  She said, "I'm Jewish, and my advice is to find a Catholic nursing home.  They're much better than any of the others.  Nursing home staff always burns out, but in a Catholic one, the priests and nuns are there to ride herd on everyone..."  I'll factor it in.  The best healthcare institution I ever saw, bar none, was Calvary Hospital, where my mother died.  I don't remember any herd-riding nuns or priests, but there was no arguing with the quality.  We did have a very good Indian physician who might have been Hindu or Christian or none of the above, and at the risk of repeating, there was also the nice young Jewish chaplain my wife referred to as "Doogie Howser, rabbi."  This suggests, I think, that quality comes from all directions.  I'm also open to llamas.  Or lamas, for that matter.

Tomorrow I'll get back to work pulling legal and financial documents together.  Because before we get to nuns or priests or lamas or llamas, we've clearly got to go through the Medicaid Mysteries.  Again.

With luck, he'll stay relatively safe and relatively manageable while the paper chase rolls on.

Signal Failure

Severely difficult phone conversations the past few days.  Saturday and Sunday, he picked up the phone, then couldn't hear me.  Long rounds of "hello...  hello... hello..."  Saturday I was convinced he'd mistaken one phone for the other - that he answered the live one, then started talking into the dummy receiver the attendants had given him to keep him from running the battery down on the cordless.  Sunday I wasn't so sure.  He answered, couldn't hear, and immediately handed the receiver to the attendant, who could hear, told him his son was on the phone, and handed the receiver back.  What does that indicate?  Probably that it's a new cognitive failure.  Something's gone wrong with his ability to process sound by itself - in the absence of any visual cues.  A voice on the phone is suddenly too abstract for him.  If so, that means that when he can't hear me, it's not because of a phone problem or a hearing problem  It's because the auditory information isn't getting processed.  He can hear it but it might as well not be there.

Last night he was able to hear/comprehend me - so we went off on an hourlong riff.  When am I coming to eat with him?  Wednesday?  That means the third? (yes - third day of the week)  That's good because his parents are going to be there.  They're coming in from New York.  But when are they coming in?  Maybe it's the next week.  They have to come a long way.  Can I call them?  (sure, I'll call them) That's good because they're coming in but it's a long way and he's in a new house that he's never seen before - it has a living room and a bedroom...  Can we find him there? (yes, we know exactly where to find him).  But when are his parents coming in?  He hasn't seen them for years... (I'll call them - I'll call them right now...)  Long runs of loops and repetitions and finally I told him that I needed to call his parents right now to find out what their plans were, and then I'd get back to him.  Otherwise I never would have gotten off the phone.

I'll go to New York tomorrow - first time in two weeks - and see if he's any better in person.  I don't expect he will be.

In an hour I'm going to drive over to D's office and sit down with her and review my nursing home visits so far.  I'm still leaning strongly toward Nursing Home 3... which means it's time for an objective reality check and some guidance about what to look for and what to ask about during the follow-up visits.  There's a fine line between intuition and recklessness and I want to make sure I'm on the right side of it.

It's interesting how things simplify themselves if you let them.  Suddenly there's no question that I have to move him... and no question that it has to be a nursing home (there's no way a group home could cope with him).  So while it'll be difficult, at least there won't be the added difficulty of agonizing over the decision.

I also think that, whatever my reservations about Mrs. Q, she was right - he's going to crash in a nursing home.  But since there isn't an alternative, his crashing is a given.

I'll figure out where, and then all of us working together - him, too - will figure out when.

Things Fall Apart in New York, and Nursing Home 4

The situation in New York is coming apart quickly now.  My father reportedly had a bad few days over the weekend and at the beginning of the week.  On Monday, for some reason (or none), he threw his meds at one of the attendants.  Tuesday morning he was due at Dr. B's.  E and M had a hell of a time getting him there.  Dr. B immediately doubled his Seroquel dose (to 100 mg this time?  I'm losing track).  Yesterday night, during our one-hour-plus phone call, he was intensely paranoid but relaxed and dreamy at the same time - strange, but that's usually how the Seroquel plays out.  In a quiet, drawn-out, languorous way, he went on about the horrible people in his apartment - "the women" (he also called them "niggers" at one point, totally uncharacteristic but character really doesn't apply here anymore).  He told me that on Tuesday morning, one of them had made him so angry that he grabbed her, pushed her backward over his knee and threw her to the ground.  Of course nothing like that happened.  His fighting delusions (often elaborate, involving eight or 10 people) typically happen during his hospital stays.  This is one of the first at home.  Seroquel again.

E and M wound up at loggerheads during and after the doctor visit.  M wants E to be more interventionist - get my father outdoors more often, for example.  I agree in principle but had to remind M that even when he was whole, my father was the most stubborn man in creation.  Getting him to do anything he doesn't want to do is nearly impossible, and the usual techniques (distraction and redirection and such) often don't work.  Flexibility is key.  Case in point - E was getting him ready to go downstairs and get into a cab, and my father didn't want to put on his street shoes.  E took him to see Dr. B in his bedroom slippers.  M objected.  I understand, but I have to side with E - what difference does it make, as long as he's not barefoot?  Opting for slippers is the kind of improvisation that they talked about at Nursing Home 3 - a necessity, I think, and the main reason why, right now, they're at the top of my list.

As far as the nursing home list is concerned - I'm getting to the end of the first round of the search.  Tuesday afternoon, in between trips to a regional vet to deal with a Bombay cat with MRSA (life is complex), I was able to visit Nursing Home 4, which was nearby.  It's owned in common with Nursing Home 3, through some arrangement that I don't understand.  I liked it.  Very nice physical space - grounds with sitting areas and nature trails that the patients get to use, a small aviary in the lobby.  Good atmosphere - more visitors than I'd seen at the others, though that could be accidental.  The tour was less satisfying - given by an admissions person in a uniform of the kind you'd see on hotel staff.  She was fast and glib and had me in and out in half an hour.  I suppose I shouldn't put too much stock in admissions people - how much contact with patients are they going to have?  On the other hand, the depth of the discussion at Nursing Home 3 continues to impress me - it was a whole different quality of interaction, and that has to count, too.  So for the moment, Nursing Home 4 stays in play, but Nursing Home 3 is still at the top of the list.

On reflection, I've decided to rule out Assisted Living Facility 2 - the fact that they don't take Medicaid is a problem.  I could gamble on his dying before he'd need Medicaid coverage, or on being able to transfer him later to a Medicaid facility, but neither seems like a good option.  As for Assisted Living Facility 3 (note to self - they're really group homes, and I should start calling them that)... I spoke to someone who told me that I'd have a better chance of reaching the admissions director if I called him on my cell phone.  I haven't tried him yet.  There's nothing wrong with being given a cell phone number, but there's something about it that reminds me that the group homes are small, quirky establishment, mostly run by founder-owners.  I'm not sure that that's going to give me what I need.  I suspect at the end of the day I'm going to opt for one of the nursing homes, but the question is open for now.

Today I sent an e-mail to D, the Maryland care manager, giving her a quick rundown of my initial impressions, and asking whether she'd be willing to meet with me and give me a reality check before I start follow-up visits.  I don't know if she'll bite, but my sense is that an objective conversation with an outsider would be helpful at this stage.  Elsewhere on the research front, Dr. C, the friend of a friend who's an emergency physician, tells me that Nursing Home 1 has a terrible reputation.  I didn't like it much, either, and it's good to have a gut impression confirmed.  Unfortunately, it turns out that Dr. C is based in the Baltimore area, and doesn't know the facilities in the DC suburbs that well (Nursing Home 1 is run by a chain, so it's a different animal).  He promised to check, but I don't know what he'll be able to find out.  Still, every insight helps.

I didn't visit New York this week.  Multiple reasons - cat care requirements (I have to administer meds five or six times a day, including at oh-dark-hundred), the fact that I've got to push through the nursing home search, and also the fact that I needed a break.  The New York scene is getting to be too much, which is one more reason why I've got to get the search concluded, start an application, and do the transfer.  It's all overwhelming, but as long as I'm getting overwhelmed, I might as well be overwhelmed in the right place for the right reasons.  I could say something cheap about my father going south, but I'll let that go... for now, at least.  But I'm sure the thought will surface again soon.

Becoming an Orphan

Visited today for the first time in two weeks.  Heavy deterioration.  He's dissociated from his hands and feet.  He tried to give me one of his hands to take with me (he wanted to lend me a hand, yes, good line, et cetera, et cetera...)  Backstory: E had apparently treated his hands with some kind of lotion.  He enjoyed the sensation and enjoyed that they were soft afterward, and this was how it came to him to share the experience - "Here, would you like one?  Take it!" 

Later, he was lying on his bed with a cat to his right, and he said, "There's a baby here (cat name: Babe) and there are two feet here, so everything's where it's supposed to be."  Then he got alarmed about the television.  It was showing a sports news program on SNY and the stream of images was too much for him.  He told me there was something wrong with the set - "it's all clouds coming up" - and he didn't know what he'd done to mess it up.  Then he got upset because I was sitting on the bed next to him and he could hear me in his right ear, but he could see me only in the mirror, and the spatial situation didn't make sense to him and he wanted to know where I was.

We're finally getting into classic Alzheimer's symptoms.  A couple of weeks ago he looked at a childhood picture of me and asked who the fat guy was.  Last week, on the phone, I told him I was down in Washington, where he'd been when he was in the Coast Guard, and he said, "I was in the Coast Guard?  I don't remember that at all."  I talk to him by phone less often than I used to - at least half the time, I can't get through to him, because he insists on carrying the cordless phone around with him and punching the buttons obsessively.  The phone is off hook and the batteries die and all I get is a busy signal.  Today when he started punching at the phone, I gave him a spare receiver that wasn't connected to anything.  One of the attendants had found it in a closet and given it to him to try to distract him.  It's not very satisfying for him because it doesn't make any sound.  Maybe there's some sort of play telephone I can give him that'll generate beeps or a dial tone or something.

I had lunch with him as usual, and a half hour later he was anxious about whether I was hungry - couldn't remember the meal.

It occurred to me the other day that I don't really have parents anymore.  This is a new thought, though I have to admit I'm surprised I didn't get to it sooner.  My mother died in 2003 and that was clear cut. My father's been disappearing for a while, but even recently, there was still a person there who retained some history and you could relate to him.  For example, he'd ask me about work and of course I'd have to prompt him and help him along, but at least at the end of the process I could get across something more or less factual.  It's only in the past two or three weeks that I've discovered I can't do anything remotely like that.  He'll still ask how my work is going, but he also has to ask what my work is and it's clear that the explanations aren't getting across.  Stray bits of memory and identity turn up - today he almost remembered me as an infant (that is, he remembered being able to hold me in one hand) but couldn't connect that to the full experience of being a father, and in the next couple of sentences talked about how he'd adopted me and how we'd met during the war and how I'd been a friend of his for a long time - since our mother was alive.

There's nothing extraordinary about any of this (note to new readers: as I try to say often, there's nothing extraordinary at all about anything I'm describing on this blog).  And I don't mean to sound self-pitying about it because I don't feel that way.  It's just a new set of facts to deal with.  But it's a little jarring to realize that until very recently, even with all the damage he's taken, there was still a father-son relationship in play and I still wanted to talk to him about work and life and current events and things like that.  The idea that I can't do that at all is new and I'm just beginning to get my mind around it.  He's suddenly no longer a cohesive person I can identify as my father.  I still matter to him and I have obligations to him (in fact there's an extraordinary amount of work to be done) but that's not the same as having a human relationship with all or most of its features present.

We were a very small family.  I was the only child and there were blood feuds and estrangements with all of the other relatives, so my mother and father and I were nuclear in the purest sense.  I guess that's over.  Fine - lot of orphans around, so what's one more?  The only strangeness here is that one parent is dead but I still have to visit him and work with him and manage his Medicaid paperwork and pay his bills.  All of which is a sort of Alzheimer's cliche - people in brochures call it "the long goodbye" and such - but living the cliche is its own kind of weird. 

A related thought, about the blood feuds - you want to go back in time, knowing what you know now, and shake those people, not just the relatives, my parents too, and tell them to get over it fast because what's coming is truly awful - the cancer and the Alzheimer's and lots else because all of them had really bad experiences at the end.  I'll expand on this at some point.

Dwelling on it is pointless of course, but the idea that in spite of still having to care for him I'm an orphan is novel, at least to me, and it wanted to be shared.

I heard today from Assisted Living Facility 2.  They don't accept Medicaid, and that may rule them out, but I still have to do the math - their run rate is lower, and it's conceivable that that he could live to the end there on private pay.  I'm not sure that I want to make that actuarial bet, though.  There's one more ALF still pending, and I'll make one more attempt to contact Nursing Home 4 before I give up on them.  After that I'll be at the short list, and I'll sit down with D, the Maryland care manager, and start sorting through the options and the costs.  Philosophy is nice but the workload is where I left it, and the task for July is to push through it and start an application.  More updates soon.