Bloodshed of Various Kinds

A spectacular day last Friday.  E2, the night attendant, found more blood in my father's Depends.  She did the right thing - alerted E, and alerted M, who contacted Dr. B's office and set up an afternoon the appointment.  I got phone messages through the morning and it was either extremely conscientious professionalism or flat-out panic.  Among professionals it's sometimes hard to tell.

In the middle of this my father found out about the appointment and threw another grand mal fit - screaming, cursing, the god-damn this and the god-damn that.  E couldn't cope and put me on the phone with him twice.  As in the past, it sounded like the worst of his tantrums that I remember from my childhood.  But this time - unlike the most recent one - I had no particular reaction.  I wasn't repressing anything - the reaction just wasn't there.  During the first call I listened and let him play himself out and tried to humor him - well, let's just go along with it and let these people have their way and then it'll be over.  The second time I gave up and just told him bluntly that he had to go to the appointment - there was no choice.  He snarled and cursed again and E managed to get him out the door.

Dr. B's crew found nothing - maybe another lifting injury (it's hard for him to get up from a chair and he might have burst a blood vessel while forcing himself upright), maybe just one of those random events.  But nothing consequential.  When she got him home, E put him on the phone with me.  He sounded abashed and kept talking about how nice everybody had been over at Dr. B's office.  The abashedness continued through the weekend, which translated into a desire to be helpful.  Saturday night we had a marathon call - he'd come up with some sort of scheme about (I think) involving M in my work, and wanted to tell me how it would benefit me professionally.  In the same way that Friday involved fragments of his rage response, Saturday involved fragments of his paternal advice mode.  It occurred to me that he's getting Cubist - there are abstract, distorted gestures that are related to (but not the same as) his personality when he was whole.

Yesterday, another kind of bloodshed - I got a call telling me that my New York contract job, the one that's subsidized my New York travel for the past year and a half, will end at the end of the month.  Or... it won't end, exactly, but it'll shift its focus to DC - I won't be required to log time in the New York office.  And there won't be a set level of income - maybe none at all, maybe a little, maybe a lot if things get active.  There's nothing unusual in any of this - not in an economy that's crashed out.  Just about everyone I know has gotten a similar call or an unexpected visit from Human Resources or what have you.  So I'm not feeling like I've been dealt an unfair hand or anything like that. 

But suddenly I've got to deal with a whole array of practical problems, not the least of which is, how do I manage to get myself to New York to visit my father?  The answer, obviously, is that I don't.  I can continue for a while, by switching to long day trips and drawing down all the Amtrak miles I've accumulated since I started this nightmare commute.  But it's clear that I'm going to have to move him to a local nursing home - and fast.  No more heel-dragging allowed.  I had my reasons for delaying - the New York home care establishment got good in early February, as soon as E returned.  And why destabilize a good thing?  And then there was the surgery to deal with... All of which are legitimate excuses.  Or they were.  Now, game over.  New game starting.  New rules.  Rule number one is this: my situation is my situation, and I have to do what I have to do.  So he moves because of my needs, not his.  Maybe his needs also dictate that a nursing home is best - if that's not true now, it'll be true soon enough.  But let's be realistic - I'm trying to balance everybody's requirements and for the moment, mine have to come first.  Sad, but I don't see a choice.

It's neat, I guess, that all the elements of the current collapse have come together right in my living room - failed healthcare system, failing economy...  You couldn't ask for better seats.  Still - I realize I'm not alone in any of this, and that many people have it worse.  So no self-pity.  Maybe some irritation, though.

Looking on the bright side - if you thought the narrative was flagging (and it was), well, that's not going to be a problem anytime soon.

So please come back and visit - there'll be more events to read about very shortly.

Comments

[julie]

Hi Alan,
I haven't commented lately, but I'm still reading every post. We have had our own escalation
and sometimes all you can do is hold on for the ride is not smooth. A bladder infection causes
all kinds of wackiness as most of the caregivers can tell you but not many of the doctors seem
to know. After three weeks visiting various dr. offices, we finally had a urologist take a urine
specimen. Hmmmmm......wonder why that isn't standard procedure when the problem is in
the area of a persons plumbing. So at some point we deal with more medication or surgery.
Each of those choices has their own downside. Surgery with anethesia or more medications
every day with the added expense and drain on a fragile overloaded system. I think at some
point the choice will make itself. So our stories sound somewhat the same only different.
Again my son tells me to suck it up and drive on soldier. I guess all I can do is drive.

[Shu]

It does rather feel like the whirlpool seems to widen and deepen at the same time. I SO empathize with all that is going on with you-all, and the "fixer"/"solver" in me just wants to be able to put things right IMMEDIATELY for all of us -- but the world is upside down, both with the economy and the shapeshifting of our parents. I glance back in time at my 'self' at various points in my life and wonder how I ever felt even marginally secure with this tattered future to face.

The whole dissolving health situation with our elders is so disconcerting, and the inability of anyone "out there" to be able to help us even analyze what choices and consequences are in the Alzheimer's patient's arena is very disconcerting. I look at what happened with Snowy's surgery and non-connected hospital grab-stay last fall, and how that pushed her closer to the ledge despite all of our frantic attempts to protect her, and I get really angry and upset that there's nowhere to go to get guidance for these questions. Snowy suddenly has cellulitis with no information on how this came about, and I don't know what to do to ease her problems with this.

SO sorry about the job situation and the added !!!!!!!! that creates with dealing with your father. Just one more thing to layer complexity atop the complicated, eh?

Always reading and appreciating the sharing of the journey. I've felt too close to the bottom to write much lately and am trying to find a brighter moment to emerge with some sharing.

Hugs to you all there from the Small World.

Empathetically,
Shu

[Rachel]

Wow, what a bummer, Alan!

Well, I should update you on my/our move here. It's been over a week already.

We got my dad here via regular plane. I used Travel Care & Logistics, Inc. (http://yourflightnurse.com). Not cheap, but still a lot less expensive than a private ambulance service, and they were great. Helped with all aspects of travel -- to and from the airport, getting through security, talking with the airline personnel and assisting with the transfers from wheelchair to aisle chair to seat and then back again. There was NO WAY I could have done it on my own. They did make arrangements for oxygen on board, and ended up using it -- I don't know that anything bad would have happened without it, but she measured his blood O2 levels and felt there was enough of a decline during the flight to use it.

We made it to the Sunrise (technically Brighton Gardens, but same difference). For the first three days, he had a designated care person from an outside service with him at all times, sot hat they could monitor him. The people they sent were very good ("Life Matters" was the name of the company).

It was a hard transition. We came in on Monday, I spent most of Tuesday with him, and then Wednesday afternoon/evening. Thursday I went back to work but have been over there every evening. The first several-to-many days, he was very concerned about "where's my daughter" or "there's my daughter" or "I want to sit near my daughter and look at her" or answering how are you with "I'm fine -- my daughter is here!" The private aides all talked about how when I wasn't there he'd been asking for me. While intellectually I understood he was in a new environment and seeing me was comforting to him, I tended to freak out hearing that because of MY emotional reaction that I couldn't stand the idea of having to be constantly there.

I was also concerned about whether or not they could handle him. He is much higher needs than I had anticipated, and I was (and am) concerned about his ability to eat, based on his current level of manual dexterity. I also worried about the transfers. And whether he could just kind of manage there without his little person by his side. But of course it's insane to pay so much for an ALF -- particularly with the enhanced care -- and to ALSO pay for private duty people.

There is also an issue about the noise level, particularly at night. There is a tendency to gather everyone around the TV in the evenings, and there's one woman who sometimes does some shrieking/keening, and another couple of residents who might get into a spat. Even just the basic noise of people talking and aides calling back and forth and requests for assistance can get noisy.

Several times, my dad has said to me that he doesn't feel like this is the right place for him. He wants someplace homier and more quiet.

I had not thought that a homecare place would be best for him because I'm always a step behind. The guy who was living independently would not want to be in some pseudo-family arrangement and would want his own place. This guy, though, who accepts help with eating and with dressing and with bathing (the latter two reluctantly on occasion!), would maybe not have such problems. BUT because he is a big guy who requires two or three people to safely transfer, it could be hard to find a homecare place that would work.

And maybe it won't be necessary. Last night I showed up and my dad told me that he had a "spectacularly successful day". I was never able to find out why, but I think that part of it was the exercise class in the morning (twice a week) that he had enjoyed before. Another night I showed up, and shortly after I got there the woman turned off the TV so they could play a memory game. My dad turned to me and said, "Oh, I like these!" So we played the memory game (wherein my dad discussed the Teapot Dome Scandal, a.k.a. the Teapot Dome Massacre, according to him -- the woman and I nodded and said, "ohhhhh" and then she moved on to another topic) and sang some songs, and then he went to bed.

I also do wonder if a nursing home might have been better, though. But we're here now.

It is very exhausting to me right now going over each evening to Maryland, and then commuting back to Virginia at night. I just signed a lease for an apartment that is only about a block from where he's at, so once I can start staying there that should help. (I have no idea when I will move the mainstay of my stuff there, but even a weeknight crash pad would help.)

One major factor in my choice of this place for him is that it is near a metro (I have no car and am a bad driver). If they can accomodate him, it would be easier for me to keep him in this place -- again, particularly once I am fully moved into the new digs.

I don't know if he knows where he is. When he said this wasn't the right place for him, he asked again about Maryland / Virginia, and I just said that I'd look into it. Which, in a sense, I am. I have told the Geriatric Care Manager here about my concerns, and while her advice is to give it time to see how it goes, she is somewhat prepped for looking at other options.

(I was tickled the other night, when it ended up taking a long time to get someone to help him to bed (because he is so labor-intensive, they're still trying to figure out the timing particularly relative to other folks trying to go to bed), and we were chatting about Maryland and how far it was and how to go there. I told him it was about 2 hours by plane or about 12 hours overland, not wanting to deal with saying that it was close by (for fear of "Let's go now!") or that he was already there (for fear of "This is it? This sucks!"). He said he'd take the plane trip. Out of curiosity, I asked him when the last time was that he'd taken a plane trip. He said, "Oh, a long time -- years." Of course, it had been less than a week since we'd had a very memorable plane trip.)

I also worry a little, maybe, or wonder, at least, about how often I see him with his wheelchair brakes locked. He can't undo those on his own, so that means he's stationary wherever. He also can't manage the door to his room on his own, so while an aide might put him in there if he asks, then he's stuck there until someone gets him again. But I also don't know if he is managing the wheelchair travel by himself so well these days anyway, or if it's not better to let them put him somewhere. Would any of that be better somewhere else? Don't know.

Overall, I guess, things could have gone a lot worse. He did not have any major meltdowns, although he did have one night of some despair ("This place is so big, like a prison, I'll never get out of here.") and, as I said, several instances of "I don't think this is right for me." There have been some things that he has enjoyed. He has not once asked me about going home, or for items from his house, or about his former caregivers. And he is getting some degree of food and getting clean on a regular basis. I'm hoping that the daily activities keep him busy enough that he is sleeping at night.

The manager types all seem very dedicated to their jobs and the residents. The regular night manager and I were chatting one night, and she said that she wouldn't work on any other floor, and I could just see how much she loved being there. The staff -- well, still getting to know them, and there seems to be a bit of a mixed bunch, some very into their jobs and others just getting their paychecks. About what you'd expect. But no one is giving off a "snake pit" vibe.

I am getting the care manager involved here much more quickly than I did the one in Chicago, and feel like it's worth investing in weekly trips at this point to help build up rapport. Plus, I desperately need the outside perspective. I tend to be very "reactive" -- I panicked the first few days and expressed all my concerns to her, to the place, etc. Everyone told me to wait and see, but I had my big panic reaction. And I'll be reactive the other way -- yesterday's "spectactularly successful day" has me coasting, even though there's no more reason to think that will last than there was for thinking "this place is like a prison" would last.

The big surprise was that when the local doctor examined him, he didn't think that it was Alzheimer's. Could have knocked me over with a feather! But he explained that he suspects corticobasal degeneration (CBD), which can also cause dementia. It also causes physical problems, including some symptoms similar to Parkinson's, which my dad's Chicago doctor had tentatively diagnosed but which had not seemed to respond to medication (as it would not, with (CBD). CBD does seem to fit in better with some of my dad's current physical symptoms more than Alzheimer's -- the weak right arm which has progressed to being practically useless, the descent within a few months from daily walks to not walking to not being able to reliably stand up with straight legs, the spatial issues, etc. Of course, it doesn't have to be an either/or situation.

The other big surprise from the doctor was a recommendation for hospice. He told me that it no longer has to be only when someone is within 6 months of dying (which I knew), but the impression I got from him was that he thought it was unlikely my dad would be around for another year. But it's hard to know -- if he continues the current rate of decline, 6 months might be right, but if he plateaus it might be several more years. Because CBD is pretty rare and hard to diagnose, I don't know that it changes the prognosis -- the projected life span is a smaller range than that with Alzheimer's, but I have to wonder if that has anything to do with later diagnoses. And everyone is different anyway.

Because I want as many eyes and ears and hands involved this time, I did contact hospice (Jewish Social Service Agency's, which is bonus because my dad had expressed desires to be more involved with the Jewish community recently). I also did ask them not to call themselves "hospice" or discuss end-of-life issues with him. Based on the conversations we've had in the past three years, I do not think that would go over well!!

Unfortunately, my dad and I have not had conversations about end-of-life issues from before his comprehension was impaired, so it's hard to know what he would really want. Does that make me wrong to start hospice? Don't know. I am desperately hoping that Something will happen that will not put me in the position of saying "Don't treat this pneumonia."

Julie, Shu, good to see both of you, and hugs to both of you as well.

"I glance back in time at my 'self' at various points in my life and wonder how I ever felt even marginally secure with this tattered future to face."

Beautifully and oh-so-accurately put, Shu!

Alan, one thing I'm wondering, because you seem to have a better set-up in NY for your dad than I did for my dad in Chicago, and because your dad isn't agitating to move the way my dad was -- could you use his funds for your travel to keep him there longer? (I have to admit, I have a VERY hard time paying myself back for a lot of the expenses I've paid for my father, and have never even tried paying for my own travel expenses. Partly because with the POA disputes he would sometimes accuse me of being after his money and I needed to be able to say 'I don't want your money' without having to go through 'and I just want my travel expenses paid because it's not like *I* want to come here so often', and partly ... I don't know, wanting to keep some distance.) Or is it a matter of not having the time for the trips now?

Yours-from-a-work-in-progress-and-knocking-on-wood,
Rachel

[Alan G. Ampolsk]

Welcome back, guys - it's good to hear from everybody.

Unfortunately I don't have a lot of time to respond right now but the short version is: yeah, we all seem to be sailing in the same fog, don't we?

I for one appreciate the company.

Julie - I'm constantly amazed at what the docs focus on and what they miss. As to driving on, I tell myself that, too. It's a good theory.

Shu - was hoping you'd have good news (or, at least, less bad news) soon. I'm sure it'll happen. I think life naturally produces conditions like this - when I was an undergrad, my adviser, who taught Islam, liked to talk about the tendency of Allah, notwithstanding all his compassion and mercy, occasionally to bind you hand and foot, throw you off the end of a pier and say, "Swim!" To me, in that respect, Allah = Life...

Rachel - with it all, I'm glad you got him relocated, which is probably the main thing if you can step back from it (hard to do). It may be true that he'll settle in more over time. I wonder if my father is going to react the same way and I suspect he will - I try to comfort myself by saying that he's less oriented to place now, but if we move him, the result of the upset may be that he fixates on place and on being in unfamiliar surroundings. Time will tell. As to visiting him in NY, I'd have to get an elderlawyer's opinion about whether that would be considered a legitimate use of his funds. It won't be an issue for several months, and maybe not at all if we relocate him during that time. It's appealing in some respects to keep him in NY but with the focus of my work shifting to DC, the visits will be harder to manage. And the value of having him in his apartment is equivocal at best - or seems that way, 'til we find out how he reacts to the alternative...

I hadn't heard of CBD. I wondered if my father might have some aspects of that since the early presentation of his symptoms wasn't classic Alzheimer's - there were cognitive issues but no memory issues 'til fairly recently. But the physical symptoms don't match. So I guess I'll have to stay with the mainstream...

I'd also like to solve all the problems but I think they're just going to have to work themselves out...