Dementia Nights

Catching Up on Comments, and Another Blog to Visit

I wanted to take a moment to apologize to all my recent commenters.  As the regulars know, I usually try to respond to each comment, or at least to respond on each entry.  But things have gotten away from me in the past couple of weeks - due mainly to shell-shock, as already noted - and I've fallen behind. 

I thought it would be best, in this one case, just to thank everyone all at once for checking in this month and keeping in touch. 

Part of what I'm learning at the moment is that the nursing home move is one of the big crunches on the Alzheimer's trip.  That sounds obvious when I say it, and I think I knew it intellectually, but as so often, I'm finding that I don't know anything 'til I actually have the experience.  It's overwhelming on so many levels and I'm just beginning to find my way back out of the emotional woods to the point where I can begin to treat it the way I need to right now - as project management.  Of course the emotions will be there and I'll get back to them but all the moving parts need attention first. 

It helps, once again, to know I'm not the only one going through all this or reacting this way.

As to specifics...

Flouncy: I'll look into Risperdal.  My father is due at the geriatrician's the week after next, and I'll raise the question with her in advance. 

Rachel: Glad to hear you're getting through it all.  Gives me hope that I can, too.

Shu: Thanks, and there's an outside chance I might need to get back to you about the cats, though it looks like we're OK for now.  I suppose in a crisis, shipping might be possible.  You wouldn't want the psychotic one by any chance, would you?

Cathy: It sounds like we're in the same place, give or take.  With my father it's the opposite - he has no idea he needs care, which will make his reaction to the nursing home sort of a wild card.  My guess is he'll like the attention and the company, and hate the setting.  But I've been wrong before.

Finally, a welcome to a new friend, Ian Lind, who blogs about his father's dementia among many other topics here (if you want to read only the dementia material, click here).  By all means, check out Ian's blog.  There aren't many people who can manage to get at dementia in a way that's clear and accurate and relentless and unsentimental, and he's one of them.  Here's an entryto start with if you want to get the flavor of it.  Ian, I'll be adding you to the blogroll momentarily.

Again, many thanks, and I'm grateful to know I've got company on the path.

Now back to our regular programming, already in progress.

Lucidity and its Disadvantages

After weeks of incoherence he suddenly snapped into focus.  His speech was relatively clear, his energy was high, and even his reading comprehension was decent.  He was in good spirits.  It made for a very trying visit.

This probably says more about me and my state of mind than it does about him and his condition.  But cancel that out and it was still a difficult day - E looked exhausted and so did I when I left, a half-hour earlier than I'd planned to.  The problem is that his good episodes aren't really all that good.  It's more like an alternative, manic form of distress, where he pours all his effort into trying to figure things out.  It gets relentless, the endless vocalizing and spinning.  You want to get him to stop, or at least slow down, so he can rest, but that's impossible.  He just goes charging ahead, right past anything you can try to do to intervene.

So the good news was that he was engaged with things and able to read the words "Happy, Happy Birthday" on the card from DOROT, the charitable organization that used to send him home visitors.  And he could make out lots of words - a surprising number - as they appeared on television.  He was even able to wonder how his name got onto the front page of the newspaper (it's on the delivery label) and what it might mean that it was there.

The bad news was that the words got sucked into a four-plus-hour series of kaleidoscopic loops, like the one about E.  Should he propose to her?  She's always around and she'd said some things that made him think that maybe... there might be a News at 11 thing.  Because she's not seeing anyone else.  Or it could be she's just putting on a show.  And what he'd really like is a job cleaning apartments.  The women come in and they're not very good at that.  Would someone hire him?  If they did you could see clearly (takes off glasses, shows me the lenses) like here, except for this part (smudge on lens)...

Throughout the day there were rapid switchbacks.  At one point - and this hasn't happened for a year, maybe a year and a half - he was able to develop a couple of consistent memories of me as a child (you used to be this big, and I'd pick you up out of the water) before he looked at a photo of me and asked who that guy was, then looked at the photo of himself in his Coast Guard uniform and said he thought it had been "faked up," then asked me whether we'd worked together during the war...

Eventually - and for the final two hours - he fell into the old obsessive riff about whether I could sleep over.  No, because I have to be back in Washington for meetings tomorrow.  Washington?  Yes, Washington.  How far is that?  About five hours 'til I get all the way home.  Well, that's really close, you could stay over and go there in the morning.  But then I wouldn't be able to be there for my meetings in the morning.  Where?  Washington.  You have to go to Washington?  Yes.  But that's just downtown at 30th Street (a Penn Station memory?)  No, it's a lot farther than that.  Well, I think you should stay here because it's getting ready to snow...  I tell him I'll be fine because I'm taking the train.  The train?  Yes, the railroad train.  Where?  To Washington.  How long does it take you to drive there?  Well, several hours, but the nice thing is I don't have to drive because I'm taking the train.  The train?  Yes, the train.  Where?  To Washington.  But wouldn't you be a lot better off if you just spent the night here...?

And so on, right up 'til the moment when I told him that I really had to catch the train but I'd be back very soon, and left quickly before the loop could begin again.

Obviously, as I've said before, you can't take most of it literally.  What he's really saying is that he doesn't want me to go.  Which means that everything - his agitation, my breaking and running - all of it is part of the argument in favor of the nursing home.  I can't take the travel anymore, he can't take my leaving, and no one attendant - not E or anyone else - can take his flights and his monologues 12 hours a day.  He needs to be close by with a big professional staff handling him - people with some training, and enough of them so they can relieve each other.  End of argument.

I was dead weight on the trip home, and apart from professional commitments, which were non-negotiable, I wasn't good for much of anything today.  But tomorrow it's back to the task list and planning for the move.

Opening Moves

Am still feeling somewhat catatonic but in spite of that, I'm moving forward with the task list - which, in typical fashion, has started to take on a life of its own.  Soon I'll be fully concentrated on the work.  There's a lot of it.  Blowing up his world is intricate and complex, and it needs to be timed precisely.  It's like any demolition work. The explosives need to be placed in specific locations, and set off in exact order, and the ground has to be prepared.  Otherwise, the whole thing will come down on your head, or on someone else's...

Updates:

Application - It's still with the Maryland elderlawyer.  Tomorrow I need to get after her and see whether it's good to go.  Obviously I have mixed feelings about this, since once she signs off, I send it to the nursing home, and that starts the clock in earnest.

Cats - My friend Adam and his fiancee have agreed to take Babe, the sweet one.  That's a best case, and I'm enormously grateful.  My motivation is mostly selfish - I don't want to lose contact with the cat, and now that she'll be retiring to Virginia, I won't have to.  Less selfishly, it means I can take her to the nursing home for occasional day visits for as long as that has any effect.  Now I have to contact the shelter in New York and start making arrangements for Scooter, the psychotic one.  He deserves an easier life, too.

It's odd to think that the cats rank so high up in the priority list but they do, in part for pragmatic reasons.  The cats need to be moved a day or so before we move my father.  Sooner than that and he'll be upset and confused.  Later isn't possible - once he moves, there won't be anyone in the apartment to look after him.  So in this respect it's cats first, humans second.  Property comes third, but I can't even begin to think about that yet...

Transport - How do I get my father to Maryland?  My first impulse was to drive him myself.  This appealed to my completist tendencies - I'd have done all the work involved in delivering him where he needed to go.  I was willing to make reasonable compromises - like dosing him into oblivion on Seroquel and having a traveling nurse in attendance.  But my wife was violently opposed, and argued repeatedly that I'd wind up having a heart attack behind the wheel.  Given my past angioplasty-plus-stent, there's a non-zero probability of that, so the concern isn't totally unreasonable.  Adam, who has a professional background in public safety, made a different case - namely, that my plan is terrific as long as everything goes according to plan, but it's bad if things go south.  If, for example, my father comes out from under the Seroquel, as has been known to happen, then it's going to take two of us - me and the nurse - to try to calm him down, and that doesn't leave much in reserve for the driving.  Better to have a driver take care of that - I'll be more valuable doing Alzheimer's management.  And if my father does wind up sleeping through the trip, then I can keep myself busy live-blogging it.  So I'll go with my advisers on this one.  Now I've got to find a car service and a traveling nurse...

Like I said, you get busy and before long you've forgotten about yourself and your fatigue and your emotions...

I'm on my way to New York at the moment for my now-biweekly visit.  It's getting harder and harder to make the trip - I'm much more resistant to it than I used to be.  Maybe I'm over quota, or maybe I'm transitioning into a nursing home state of mind.  The phone conversations the past few days have been difficult.  My father's speech is now almost completely incoherent - I have to guess not just at the details, but at the overall subject.  There's nothing but tone to go on, and I don't always get that right.  His agitation is high - he seems to be pouring huge amounts of energy into trying to figure things out.  So the other night, he went on for more than half an hour about (I think) some document that I need to review, and when can I do that?  The next night he was all energized about choosing the clothing we'll need to take with us when we both go into the Army.  And when is that?  And what will they let us take?  And how can we carry all the clothing we'll need for all the different temperatures?  No, that's not right...  He couldn't seem to come up with a solution that satisfied him and the agitation just got worse.  About joining the Army, I could take it as a positive sign that he's eager to go to the nursing home, but I don't think anything like that is going on.  As noted, he decided a few weeks ago that he'd like to live closer to me (downtown?  in Brooklyn?) and work in my business, and now his mind is adding details to the basic desire, so there's a delusion growing like a crystal.  Also as noted, I'll use this to make the nursing home transfer easier (yes, we're going to Brooklyn now).  But it'd be wrongheaded to conclude that he knows he'll be moving to a nursing home soon or that he has any particular attitude about it.  He doesn't operate anymore at that level of complexity.

I'm behind in responding to comments, and to welcoming new friends.  But unfortunately am north of Trenton now, heading for Metro Park, so I'll continue catching up next time.  Will also add notes on the visit.  So more to follow tomorrow or the day after that.

It Gets Real

The meeting with my wife's agency went well.  Again, no need for details - the short version is that we'll be able to manage his finances and stay well within the ethical guidelines.  Beyond that, there was a measure of human feeling - genuine compassion - that was refreshing, maybe because there was so little compassion to be found in the private sector.  Over there it was supervisors you'd thought of as friends suddenly telling you not to communicate so much about your father's situation because "you're really just advertising your lack of availability."  Here, by contrast, there was a recognition that something really awful is going on, and the important thing is to help.  Just something to keep in mind the next time someone tells you about evil faceless government bureaucrats, and why the private sector is the only solution to all the world's problems.

Coming out of the meeting, I suddenly realized that the last barrier had been removed, and I was now free and clear to go ahead with the nursing home application.

My reaction was to fall into a state of paralyzed depression and stay there for nearly a week.

I should have seen it coming but didn't.  It seems obvious in retrospect that for months, the whole nursing home project has been an abstraction.  True, there were a lot of tasks - research and meetings and nursing home visits and such - but I wasn't committed to anything.  I could have backed out at any point, because I wasn't actually sending him to a nursing home.

Now I am.

Of course, you know how it goes.  There's the moment of sheer overwhelmedness, and then you start the first task, and suddenly it's not overwhelming, it's just a series of tasks and you do them in order and it gets done.  I'm trying to get to that stage.  Monday I contacted the Maryland elderlawyer to sort ot a couple of questions about how the accounts need to be arranged.  I managed to drag that out into Tuesday. 

Wednesday I went to the Nursing Home 4 website and printed out their application form and filled it out.  It's not very long or elaborate - the more difficult things, like the medical review, happen on the back end.  But I managed to stretch out the work through the day - with a couple of extra elderlawyer questions thrown in for good measure.

Today, the application is in its envelope.  It's not going to the nursing home yet - it needs to go to the lawyer for review.  But at least it'll be in the mail.

Then there's the matter of his cats.  I need to place them, and I'm not sure where, and I'm not happy about placing them, because when I do that, it really means breaking up the family.  I've mentioned this before but I've really been in denial about it.  Today, finally, I sent a picture of one of them - my favorite - to a friend who lives nearby, in the hope that he and his fiancee can take her.  My next move will be to the shelter in New York to see if they can set up a placement, either in New York or Washington.  Washington would be best, because then I can take them over for visits occasionally, assuming someone is willing to agree to an open adoption...

At least it's a start.

I admit I'm moving too slowly.  And it's possible the process will bog down, and it'll take months to get all this accomplished.  But I don't think it's going to play out that way.  I keep coming back to the piece of intelligence I got from D, the Maryland care manager, to the effect that Nursing Home 4 has vacancies, and is taking Medicaid patients right out of the gate.  If so, then what's going to happen is this: I'll send the application over, probably next week, and they'll ask me what day I want to show up, and I'll pick a date, and then I'll get sucked into this enormous get-him-to-the-nursing-home-and-shut-down-the-apartment vortex.  If so, these are my last few moments of (uneasy) calm.

But at least I'm shifting a couple of inches closer to the edge.

However inefficient it's been so far, I get the sense that I'm coming out of my paralysis.  I can even admit that, yes, now it's real.  If so, that means more frequent updates, soon.  Stay in touch.

Another Birthday: Broad Strokes

Suddenly found I'd been dreading the birthday visit.  Not sure why - too many associations, maybe.  Or maybe I had the sense that this year, finally, he wouldn't register much of anything, and that of course would set off a fresh set of associations.  And then there's always the question of what state I'm going to find him in...

And the visit was, in fact, difficult.  In a strange way, this was a byproduct of good news.  His dosages are finally worked out.  He's good on the 25mg Seroquel, at least for now, and they've given him a stool softener, which also helps his mood.  The result of this is that he was relaxed and loquacious and spent close to five hours talking his way through a series of recursive loops.  I couldn't make out most of it but there was the moment when I realized he could no longer remember being in the Coast Guard ("was that after the war?"), and the moment when he discovered that I was his older brother.  And there was an Oliver Sacks moment, too.  He doesn't produce many of those anymore - the capacity for complex thought just isn't there - but at one point he told me there was a guy he had to introduce me to.  I said, "Sure, I'd like to meet him."  Whereupon my father rolled up his pants leg to the lower thigh and pointed to the skin above his left knee and said, "Here he is, right here."  I said that was a really interesting guy and tried to find out more, but he moved on quickly and we never got back there.

His presents were a contrast to last year's.  One way you can track his decline is through his birthday gifts and how he reacts to them.  The other day I found myself thinking about his 50th, when my mother and I surprised him by driving him from Atlantic Beach to Lincoln Center to see a revival of Man of La Mancha.  He spent the whole trip trying to figure out where we were going to wind up - for example, thought it might be the Mets game 'til we drove past Shea Stadium and kept going... 

There's not much to be gained in looking so far back.  Closer in... a year ago I was still able to buy him books, but now he can't cope even with picture books - the visual information is too much for him.  So this time there were lounging clothes and a small table radio (his stereo is dying and classical music still relaxes him), and Peanuts cards (no recognition of the characters, liked the drawing of Woodstock, could make out a word or two but only with help).  And there was a small box of Godiva chocolates, which he liked.  But he wasn't sure why there were presents and couldn't hold onto the idea that this was his birthday, and he returned several times to the idea that I was older than he was. 

An ongoing theme - he now talks constantly about wanting to move to Washington.  The night before the visit I talked to him by phone, and he said he'd had a visit from two women who told him he'd be moving to Washington to be closer to his son. I found out later that the two women were M and E, and he'd talked to M about "moving downtown."  Washington came into it later, when he was on the phone with me.  The details don't matter as much as the broad outline.  According to the broad outline, he wants to be closer to me - me being a significant person who seems to care for him.  That's fine - I can work with that, and I don't need him to know the geography or the cast of characters.

The same is true of the birthday itself.  It's not important that he knows which birthday is his, or whose birthday is his, or that a birthday is happening, or what a birthday is.  It's important that he understands that there are people who care about him and who wanted to do something nice for him.  At that level I think we accomplished what we needed to.

There's an article this month in one of the Buddhist rags about the need to root your practice in the body and not have meditation become some sort of intellectual thing.  In the course of it the question of dementia comes up and someone asks, doesn't dementia show that the mind is totally dependent on the body, if brain damage can wreck your thinking like that?  And someone else answers that yes, that's true, at least about the thinking mind, which is usually what we mean when we talk about the mind.  But mind is in fact something bigger than that.  I've been chewing over that comment and without going off into Buddhist metaphysics, I'm willing to say that the birthday experience - and also his ideas about moving to Washington - illustrate the point.  The details are completely gone (whose birthday?  where's Washington?)  But there's also the level at which a full set of connections is being made (you did something nice for me.  I want to be close to you).  If you want to refer to that as mind, well, it might just be.  I won't argue.  Interestingly, you can even cancel the the individuals out of it and you'll still have something complete - a nice event happened.  A connection happened.  You could do worse.

The short version is, he had a birthday celebration and it was worthwhile.

As usual, the celebration was early.  His actual birthday is tomorrow, the 11th.  I'll spend a few minutes thinking about all his other birthdays (among the other meanings of the 11th).  Then I'll get back to work on the nursing home move.  Then at night I'll call him and he won't remember the date but we'll talk about whatever he wants to talk about, in whatever mode seems to be working right then.  The specifics won't register but the broad strokes will, and that'll have to be what counts.

The Slowdown Continues... for Now

And still no news.  Another quiet week.  No travel - I've talked to him by phone.  He's less agitated, less energetic, slower and more drawn out.  He's in a better mood but the conversations sometimes have an elegiac quality.  This comes through mainly in the cadences and the rhythm of the word-like sounds - it's now the norm that we'll have a half-hour conversation and I can't understand a word he says.  I try to respond to tone and project tone.  As usual, sometimes it works, sometimes it doesn't.  But in the last couple of calls, if I misstep, he doesn't get angy - just puzzled or even amused.

The other night he only produced one intelligible sentence.  It was this: "I don't know... I think I'm getting old."  He said this sadly, with a sense of giving up.

The next day I was online buying him his birthday presents - his birthday, September 11 (yes) is coming up and he's about to be 87.  Shopping wasn't as difficult as it was last year.  I'm now adjusted to the idea that I can't buy him books anymore, and that the cards have to be simple ones with clear drawings and few words - Peanuts cards are still useful, even if he doesn't fully understand them.  At least he understands that people want to do something nice for him, and that they still care, which is what matters.  Communication plays out at different levels, and words and intellect aren't always the center of the game.

This year he'll get more lounging clothing, and also a table radio.  He still likes to sit in the living room and listen to classical music, but the stereo is dying, and even on its good days, it's too complicated for the attendants to figure out.  So I'll set them up with a simple Tivoli set with a dial.  Maybe it'll make him happy for as long as he's there.

He won't be there long.  Things will accelerate soon.  Late next week, my wife and I have our appointment with her agency to find out the approved ways of managing his assets.  As I've said before, I approve in principle of the fact that they need to review the situation, and I'm happy to handle things according to their rules.  My guess is that this isn't the first Medicaid spenddown they've had to deal with, and probably not the first Alzheimer's case either, so there must be an established set of procedures and requirements. 

As soon as the meeting's over and we get our answer - which I hope will be a "yes," with added insight into "how" - I'll contact Nursing Home 4 and start the application.  And then we'll be flat-out.  I heard from D this morning that she ran into one of the Nursing Home 4 administrators at a meeting.  She found out that, I guess because of the economic collapse, Nursing Home 4 has plenty of vacancies - so many that they're accepting Medicaid patients right from the start, with no private pay requirement.  That doesn't do me any financial good - because of the interstate transfer and the fact that he has to shift from community to facility-based Medicaid, my father will have to pay out of pocket for three years.  But the fact that he can do that will make him popular with the admissions staff - cash is apparently in short supply, and he's required to provide it. 

That means that once I start the application - or even mention the word "application" - they're going to jump at him.  And that in turn means it'll be a scramble to get him here.  From mid-September on I'll have my hands full - arranging the move, moving him, closing his apartment, getting his cats to their next station in life, saying goodbye to M and E and making new Maryland friends...

Sometime this fall, remind me about the quiet, will you?

In the meantime, I hope you're able to get some quiet, too. 

See you after the holiday weekend... and frequently after that, because it's going to be lively out here.