Dementia Nights

Thanksgiving Notes III

On reflection I was wrong - you probably can't figure out what I'm thankful for.  Why should you know that?

A few thoughts...

I'm thankful things aren't worse.

I'm thankful I'm in a better position than most people to deal with this.  I've got some assets and some resources and - with all its problems - a professional caregiving establishment that mostly gets the job done.  I'm not wiped out, not yet, and I don't have to care for him all on my own under my own roof.  I know many of you have to do that and I don't know how you manage it.

I'm thankful he's been in mostly good spirits.  That's nothing to take for granted.  I don't know if it'll continue but so far, so good.

I'm thankful that I've been able to serve as his memory for the past few years.  Next year that'll matter less, but I hope it's given him some comfort.

I'm thankful that I've had this experience of him to put against other experiences (good and bad).  It fills out the picture.  I hope the experience of being cared for - when he was aware of it - helped him balance out other things that happened to him in other times.

I'm thankful that I've stumbled into a practice and a viewpoint that helps me cope.  When your life turns into a koan, it helps to have some things to do.

I'm thankful that I'm called on to do something other than help make public companies more profitable.  That's a fine thing to do and I'll probably do it again but there are other things in life and this is one of them.

I'm thankful for all of you who read and comment, or just read.  It's nice to know I'm not alone (yes, I know, I am, but I'm also not).  I hope you feel the same way.

Thanks.  Hang in.  More soon.

Thanksgiving Notes II

As promised, a few more Thanksgiving observations - not because I want to tell you what I'm thankful for and what I'm not (I'm sure you can figure it out) but because it's an anniversary: roughly two years since it became obvious that my father had Alzheimer's. 

There were problems before, as I think I've mentioned - word choice problems going back to 2000 or 2001, poor judgment during my mother's final illness in 2002, aide care after a hospitalization in 2003, loss of complex functions like household bookkeeping (not to mention the big credit-card-debt run-up) in the few years that followed.  There was an apartment fire in 2005 - he left a toaster-oven on - that in retrospect was sort of a marker.  And in the course of 2006 I gradually took over all the household management.  When you summarize it all in a paragraph it sounds like a crash, and it felt that way.

Nevertheless, in the fall of 2006, I was still telling people that he had "some cognitive problems" or "a slow-moving kind of dementia, but it's not Alzheimer's."  Which was a nice conceit.  At roughly that time, the really bizarre behavior started. 

First was the beginning of the day/night disorientation - you'd phone him at night and he'd ask why you were calling so early in the morning. 

One Saturday afternoon he called me all upset because he was expecting visitors (Harriet and Arthur) on Sunday, and the newspaper had just been delivered, and it had a Sunday dateline.  So it must be Sunday.  Where were they?  I explained to him that sections of the Sunday New York Times were delivered on Saturday - something he'd known the week before, but it was gone all of a sudden.

On Thanksgiving my wife and I drove him to Philadelphia to visit with her family.  As soon as he got into the car he told us he'd had a visit from someone in the building he'd never seen before, who had brought him food.  This was clearly the upstairs neighbor, who used to do that before my father got too strange and difficult, but all at once he had no idea who she was.

The Friday after Thanksgiving, my mother-in-law drove us to a suburban furniture showroom (we were buying chairs).  My father sat quietly in the back seat for the 40 minutes it took us to get there.  Then he took me aside and asked who the strange woman was who'd been driving us.  He'd spent the whole previous night with her at dinner, and he'd had a long conversation with her at breakfast, but once she got into the driver's seat she was in a different context - one he'd never seen before, because she'd never driven him anywhere - and so he couldn't recognize her.

On the way home we got caught in traffic at the Holland Tunnel exit.  I had the car radio on.  My father mentioned how nice it was that the city had decided to play music to soothe the drivers.  How long had this particular municipal program been going on?  I explained that we were listening to the car radio but the explanation didn't take, and he went on talking about the new civic driver-soothing broadcast program...

When we got to our apartment that night my wife and I looked at each other and admitted we had a problem.  Which, as I understand it, is the first step...  By later that week I was googling Alzheimer's.  The rest is history.  Some of it is a blog.

This year he's no longer aware of when Thanksgiving is or what it is.  And of course he can't travel.  I'll call him tomorrow night when I get to Philadelphia and see if get him oriented.  If not, I'll just follow along as usual.

And next Thanksgiving?  Who knows?

Thanksgiving Notes I

Made the trip to NY early this week - had to travel ahead of Thanksgiving.  Thought of buying him something Thanksgiving-related but couldn't figure out what.  Food would have been the right idea but I kept drawing blanks - couldn't come up with anything that wasn't a choking hazard.

So I bought him his first package of Depends instead.

M made the suggestion - he needs them, but he won't listen to anybody but me, and since I have more clout than the professionals, maybe I could tell him that I'd found this great new underwear, everybody's wearing them, even I'm wearing them, why doesn't he try them too?

I gave it a shot.  Not sure how well I did.  Had a hard time tracking them down - the Fifth Avenue Duane Reade doesn't carry them (not profitable enough for a small space, or it'd offend the Flatiron District fashion models, or something).  The 23rd Street store had them.  The guy at checkout offered to double-bag them since the Duane Reade bags are semi-transparent.  Nice offer but I passed.  I'm way, way past embarrassment.

I tried the spiel.  Couldn't tell if it registered or not.  He was low-energy and I didn't want to get him worked up, so I just left the package there - didn't get him to try them on.  He tried for a while to watch the Packers-Saints game but kept drifting out of focus and reciting the scenes from the commercials.  He told me we knew the actors and spokespeople.  Boundary issues continue.

Today M visited.  I haven't heard from her yet but my father said they were all raving about the women's underwear I'd brought over.  He thought it was really funny that I'd brought it over and just to play along, he was running around in his bloomers.

Translation - he knows exactly what they are and what they're for, and he's a little you-should-pardon-the-expression pissed off, but maybe recognizes the need, too, and so he's wearing them.  There could have been worse reactions.  Worth noting, however, that however confused he is (and he's very confused), he gets when he's being bullshitted.  I need to be careful about that.

Maybe M can add more local color.

Thanksgiving is a significant event - it was about two years ago, after several years of slow decline, that it got really obvious that he has Alzheimer's.  More on that tomorrow.

"Sometimes I'm No Place"

The visit not as difficult as I'd expected.  E stopped by early with her guardianship paperwork.  By the time I got to the apartment she'd settled him down, gotten him cleaned and dressed, and given the (troublesome) midweek attendant some coaching.  He was happy to see her (didn't fully recognize her - kept saying, "I had no idea her name was E") and everything was relatively calm.

She's good.  Yes, I know - I spent the better part of a year trying to get rid of her and now I need her back.  You live, you learn - and with luck you get her under Medicaid subsidy.  Though at this point, if I had to give up on Medicaid and go back to private pay, I'd consider it.  Yesterday around 2 p.m. - in the middle of the bloodfight over his bath - a voice told me to chuck it all and just put him in a nursing home.  Today, after E's visit, another voice (or was it the same one?) told me to forget about Medicaid and assets and just set things back the way they were.  It's entirely possible that I've spent 18 months going in a big circle - calling in elderlawyers and running Medicaid applications and pulling apart his care establishment - just to make him miserable and land in the same place.  You try to repair his life or at least put a floor under it or slow the decline.  Meanwhile the whole situation is going its own way no matter what you do.  So maybe I would have been better off just putting the tools down, instead of running all over creation trying to fix things. Wouldn't be the first time I've learned that lesson.

When I called him tonight he was in awful shape.  Profound disorientation.  The border between television and reality collapsed and he was very upset - his room was filled with people fighting (a boxing match) and people running on the street (did he know them?) and doctors walking down hallways (was he back in the hospital?)  Continued amazement about the place in the apartment - the one he first noticed last Spring - where you can take food and don't have to pay (the kitchen).  And extreme distress.  "I don't know what's going on with me - I don't know where I am at all."

And then he said, "Sometimes I'm no place."

I tried to calm him to the extent I could - talked to him about what he was seeing, followed the descriptions as much as possible, told him it was hard to figure out but we'd work on it together.  He asked if we could talk often and I told him we could.  Then something came on that seemed to be a basketball game, and told him it would be a good idea to concentrate on that and just let everything else sort itself out.  He said that was a good idea and he'd try it.  By the time I got off the phone he was in a slightly easier frame of mind.

The week-over-week decline is so steep that even the attendants are talking about it.  The weekend attendant had been off since Sunday and told me tonight that she couldn't believe how far he'd slid.

Another thought - I'm not sure it makes sense to worry about nursing homes because it's not clear he's going to live long enough to get into one.

But I've been wrong before.

Again - let it play out and we'll see.

Aide Bites Man and Other Adventures

Well, not literally, but close.

Upheaval yesterday - the new midweek attendant, the one I sort of liked, overheard my father saying he hated her.  Response?  She got angry and upset - yelled at him, burst into tears, said her feelings were hurt, asked to be taken off the case.  But of course.  Exactly what you'd want to do as an Alzheimer's caregiver.  Why didn't I think of that?

Fortunately M was there on a routine visit and walked into the middle of it.  Put the attendant on the phone with her supervisor, who promptly took the attendant's head off.  Doesn't she know the patient has Alzheimer's?  Well, yes, intellectually, but...

Taking the attendant's head off probably wasn't the world's best supervisory move.  Training in Alzheimer's care would have been better.  But that costs money and requires that you give a flying expletive...

I asked M to remove the attendant. She wasn't able to re-connect with the supervisor, however.  That's why the attendant was still this afternoon when I called and found my father cursing a blue streak at her and her cursing back.  It seems M had told her to "coax" him into the bathtub.  Her definition of "coax" involved her telling him he stinks, and trying to force him into the tub physically.  Needless to say this didn't go over well.  He's furious - especially because he had a big dinner planned because today is my birthday.  It isn't, but I wasn't going to try to convince him of that.

When I called M to update her she said, "Oh, great, now we've got two out-of-control people."  And I said, "No - we've got one person with Alzheimer's and another committing malpractice."  Which, in fairness, is sort of a fine distinction.  There's the same result in the end.

I did learn one thing - one reason beyond the obvious ones why he doesn't want to bathe.  He was shouting about how dangerous it is to get into the tub.  Five years ago - when he had the urinary blockage that led to the kidney failure that effectively started us on this adventure - he wound up stranded in the tub, delirious, for 20 hours before we found him.  That's what he's remembering.  All the old traumas are coming to the surface.

M thinks he's gone down a stage since she came on board.  I think she's right.  Definitely a stage six now.  He told me the other day that he's got a problem with "water coming out."  It took me a minute to place that as incontinence.

In other news, the lawyers seem to have left two thirds of the Partners in Care invoices out of the Medicaid reimbursement package.  When I asked, they said they were handling those "as a separate submission."  Uh, right.  And CASA claims it hasn't received the paperwork about the community trust, which means that the home care agency is about to start billing me for the Medicaid surplus, which amounts to double billing (if you're in the trust, they're supposed to waive the surplus).  As usual, connections aren't being made.  More things for me to run down.

The only saving grace is that E is going to visit him tonight.  It's a long story about some papers I have to sign because at some point when I wasn't looking, my father became her son's guardian.  Whatever.  Maybe she can get him calmed down before I get there.

Otherwise it's going to be another long night.

Alone Together, or, Follow the Money

There's been a run of comments in the past few days.  Julie wrote...

My heart bleeds for us.

And Shu wrote...

I would be SO angry if I weren't so exhausted. Where are the answers?

And responding to an older post, Roberta wrote...

I'm the only child, on my own, and I am about to explode with caregiver rage. I've been watching her deterioration due to vascular dementia for almost 3 years now. An Alzheimer's's counselor told me that there will come a point where she'll be docile, but on the other hand I hear about someone's dad who got kicked out of two assisted living places for being so ornery.

Why does it feel like we're all going through this alone?

Short answer - it feels like we're going through it alone because we're going through it alone.  Look - I hope this blog gives all of you some comfort, and I know I get some comfort from your comments and your own blogs and the discussions over on the Alzheimer's Association forum.  But at the end of the day we go back to our (solitary) caregiving lives because that's where the (lack of a) system leaves us.

You'd like to see it fixed but there's so much wrong here and it cuts so deep that it's hard to know where a fix would begin.  Better resources for caregivers would be a start.  That would require higher budgets and better pay scales in professional caregiving organizations.  Those would require funding.  And funding would require that somebody out there thought this was a problem worth solving at a higher level.

Nobody thinks that because, to be completely blunt, there's no money in it.  You know, a few weeks ago I was getting all complex and exotic (a bad habit of mine) about the idea that society can't see Alzheimer's because it can't see vacuums and empty spaces.  All very nice as far as it goes but the truth is simpler.  Nobody can see Alzheimer's - or for that matter any other chronic illness - because treating them doesn't generate any revenue.  A disease that requires drug intervention or surgery means that there's money changing hands.  Pharmaceutical companies and device makers and surgeons all get compensated.  When money changes hands, attention must be paid.

In the case of a chronic illness, there's no financial exchange to speak of.  What does home care consist of?  Mostly lower-paid labor - at most, nurses, but more usually, aides, attendants, physical therapists, housekeepers and such.  Surgery and drugs can't do much good.  So the whole problem sinks out of sight.  In the case of Alzheimer's its worse, because Alzheimer's is mostly a disease of old age.  And since old people aren't "productive" anymore (meaning they don't go to a workplace and make things that generate revenue), they're out of sight, too.  The end result is that all of us are left scrambling or staggering or what have you to try to keep ourselves sane and pull the care package together.  Either we're riding herd on underpaid, incompetent, demoralized staff, or we don't even have the resources for that and we're doing it ourselves with no background and no training.

A few years ago in another life, I got to attend a senior management meeting of a major global corporation.  You'd recognize the name.  Dozens of genuinely bright, motivated people spent days in meetings discussing strategies for making and marketing potato chips.  I remember thinking at the time how amazing and somewhat bizarre it was that all that talent was concentrated and focused on potato chip distribution.  Back then, I was sympathetic to free-market sensibilities and I told myself that this was all OK - potato chips make people happy and capital flows follow happiness and attract talent.  And in fact the challenges of the potato chip business are extremely complex and involving, and - I mean this without irony - require brainpower and talent to solve.

Now I look back and think about it differently.  I think that the potato chip meeting was a sign of how profoundly wrong things are.  Put another way - in a just society with better values, all that brainpower and talent would come together around a problem like Alzheimer's, or chronic disease, or home care.  But for that to happen, we'd have to change all our assumptions and values.  At the most basic level, we'd have to conclude that people are valuable in themselves, rather than in terms of their productivity and earning power, and we'd have to be willing to allocate resources to care for them on that basis, rather than letting them (and their families) slide into oblivion because they sit outside the capital flows.

I wish I could see some sign of that happening.  But I don't.  Not even the Obama administration has the political capital to change the way society is wired at the level it needs to be changed.  As with much else in the U.S., we're going to have to wait for this to become a fully developed catastrophe - half the population with Alzheimer's and half the society acting as caregivers and pulled out of the economic mainstream - before anybody does what needs to be done.

Some days I get the sense that that could actually happen, because it feels like the catastrophe is coming along nicely, thanks.

Bathing

I gather from Julie's and Shu's comments that bathing is a really severe battleground.  I can understand why that is.  What would feel more like total loss of control and privacy than being forced to have someone bathe you?  So of course they resist and it turns into an awful situation, because you've got the fight over bathing, and you've got the consequences of not bathing, and they both look like chaos and devastation.  Which in fact they are. 

But no, I don't blame the attendant, or anybody else for that matter.  It's just one more respect - a particularly harsh one but still just one - in which the situation just is what it is.

So as with everything else, you have your reactions and then you deal.  And then you have your reactions again.

And on we go.

Another Fall

He fell again early Friday morning.  Same situation as last time - he went to sit in a chair and missed.  M was supposed to take him to a senior center for the first time that afternoon.  He was excited and apprehensive, couldn't keep track of time, and decided to stay up all night so he'd be ready for her when she came to pick him up.  At some point around 2 a.m. he was exhausted and disoriented enough that he landed on his head instead of his...

What followed was a relatively small comedy of errors.  There was no instruction to take him to Mt. Sinai, so the EMS crew took him to St. Luke's, which is slightly closer.  The St. Luke's ER staff ran a CT scan, found nothing, and discharged him - without any follow-up orders.  The attendant forgot to take the emergency information folder with her.  She went back to the apartment to get it and never made it back to the ER.  I'm doubtful that his insurance information got into the system, which means that five months from now, I'll be chasing bills and trying to get them to the right parties.  The weekend attendant, who was just coming on shift, went up to Luke's and brought him home.

For a couple of days afterward he was profoundly disoriented - there were complete half-hour conversations that were totally incomprehensible.  He seemed a little better as of last night.

I suppose Dr. B ought to see him but she's out of the country on a family emergency.  I'll have M contact the Coffey Center and see if there's someone else who can have a look.

I have to admit that this was a much less dramatic event than the last one - which, I guess, is a sign that with all the problems, the system is working... in fact, working even better than it was in July. 

As usual in this business, I'll take what I can get.

He Stank of Urine

He stank of urine.  His pants were stained.  His fly was open all through the visit.  It was like having dinner with a homeless person.

I'm going to repeat that for the sake of all the people who think that Alzheimer's is some kind of occasion for spiritual uplift.

He stank of urine.  His pants were stained.  His fly was open all through the visit.  It was like having dinner with a homeless person.

You with me?  Everybody feeling uplifted?

Good.  Moving on with additional details...

His face was bright red.  He'd apparently tried to shave himself with the electric razor.  He was very thorough and covered everything but his beard.  Cheeks, forehead, top of his skull, all taken care of, though.  His eyebrows looked slightly odd.  They can use another pass.

Once again he was very upset that Alan wasn't there.  At one point he made it clear who Alan was - a nine year-old boy.  He asked what Alan was playing with, and told me how upset he was that he'd scheduled the visit for a day when Alan couldn't be there.  I told him it was really my fault - I had to come up on a working day, when Alan was in school.

I'm not sure what to do about the Alan thing.  Maybe he'll forget about it in a while but if he doesn't, I'm going to have to borrow a kid somehow.

He's also having more flashbacks to Atlantic Beach.  Psychological interpretation: He wants to be back at our Summer house when I was nine.  Or when he was nine.  Structural interpretation: Memories are really neural networks, and the networks that are reinforced by emotion last longer than the ones that are purely factual or perceptual.

About hygiene - I can't blame the attendant for this round.  The new one was pretty impressive.  She'd tried to get him into the shower but he refused.  She told me the argument got violent and I believe her.  His paranoia is getting deeper and sometimes there's only so much you can do.

A practical note - I'm going to wait out the 30 days for the answer on the split 12-hour shifts, but the nursing home is looking more and more like a certainty.

That's going to involve a lot of work so I'd better get to it.

Sundowning: The Home Edition

Monday morning I called the agency and asked them to remove the midweek attendant.  I hadn't seen her do anything wrong - actually I sort of liked her - but my father had taken a violent dislike to her and I couldn't shake him out of it.  Every night for the past week I'd call him and he'd rant for 40 minutes about "that bitch" - told me she was big, ugly, useless, did no work, was parading around naked, cursing at him, hitting him on the back, and, worst of all, sleeping on the floor on "that big black thing" (an air mattress).  And he'd ask me over and over whether we could get rid of her.

I wasn't sure what to make of it.  Obviously we've had a whole run of problems with the attendants - most recently the agency had to remove the one who was working the Monday-Tuesday shift and remand her for further training.  This is the one who, a couple of weeks ago, wound up glaring at me after it turned out she didn't know how to do the Heimlich maneuver.  Definitely a bad attitude.  Most of the rest have marginal skills - and of course, there was our criminal - so I wind up saying to myself, OK, when he complains, he must be reacting to something.  Maybe the midweek attendant is one way when I'm around and another way when I'm not.

Then, Monday night, I called him and he launched into an identical series of complaints about a substitute attendant - one he'd never seen before.  He described her exactly the same way he described the (ex-)midweek attendant - big, ugly, useless, naked, cursing, hitting, sleeping. 

At which point a little alarm bell went off in my head and I realized that he sounded just like he used to when we had him in the hospital and he'd have sundowning episodes.  These were always paranoid fantasies with lots of projected anger - he'd talk about people coming into his room and fighting with him and fighting with each other and trying to take him to strange places.  Hard to nail down because many of those things actually happen in a big urban hospital, but most of what he came up with had no basis in fact.

A minute ago I got a call from the new cat sitter (the old one, Tattoo Guy, had to leave because he's got stress - as who doesn't?)  Like the old one, he's got a background in human medicine, with some training in psych.  He wanted to let me that my father seemed fine except that he was being rude to the attendant and there didn't seem to be any reason for it.

So there we are.  He's now sundowning at home.  Not a surprise and it goes along with the general deterioration, but it's still something new to factor in.  He's lonely and frightened and resentful and he feels that his home has been invaded - which, in fact, it has.  Nevertheless, the acting-out is a fresh twist.  Means we're going to have a harder time figuring out the quality of the attendant coverage.  I continue to think that most of the attendants are terrible.  Still - just because you have real enemies doesn't mean you're not paranoid.

When I called him this afternoon, he was upset that my (nonexistent) son won't be joining us for dinner...

About a year ago - maybe a little longer - J, the very gifted Partners in Care social worker, told me that life would get easier once he sailed off into his own reality.  That hasn't happened yet.  He seems to be on his way but not toward a happy, serene place.

Uptown soon.  I have the feeling tonight is going to be a long night.