Small Signs, Small Portents

Am out of the policy clouds for the moment and back on the ground, doing the caregiver thing.  Nothing dramatic to report - nothing big, anyway.  He seems much worse, but not for any particular reason.  Small signs: the memory issues are really setting in now.  Short-term memory failure is evident sentence by sentence, as in:

Him: "So, did you come in your car?"

Me: "No, I came today by train."

Him: "So, did you come in your car?"

Word formation is OK in short, simple sentences, but falls apart when he tries to say anything complicated - he continues to produce long sentences full of word-like sounds.  Occasionally he seems to get annoyed when I respond by saying something inappropriate or off-target.  This worries me.  I keep hoping that he won't experience anything remotely like locked-in syndrome.  Much better if the words and the thoughts fail together.  I think that's what's happening, but there are moments when I wonder.

He's energetic and obsessive.  Thursday night, he locked in again on the idea that I ought to sleep over.  I finally told him that I had to get back to Washington to change my schedule so I could come back and spend the night, and I managed to get out the door around midnight.  (Note to self: it's not that he wants me to sleep over, it's that he doesn't want to be left on his own.  It's really time for the nursing home now).  Saturday and Sunday night we had hour-long phone conversations.  On Saturday he was focused on my new status as mayor/president/lawyer ("are you already taking cases?") and possibly baseball player - he told me he saw me playing baseball while we were talking.  Sunday he decided again that I need to go into business with Dr. R - there was a long repetitive discussion about it that I couldn't follow. 

In the next few weeks we're going to send him on more medical rounds.  He keeps complaining of earache that irrigations don't cure.  Dr. B thinks his symptoms are related to the dementia but wants to have him checked out by an ENT just to be safe.  He's also got a new lesion at the site of last year's scalp surgery - the one where they removed the squamous cell carcinoma.  With some trepidation, I'm going to have him see Dr. L.  My concern is that we're going to have a repeat of last spring's experience - a runaway process where he winds up in the hospital under general again and comes out where?  In Stage 7?  The good news is that Dr. L is a very decent person and I have a long history with him - I was his patient, too.  So I'm going to send him a note where I'll try to put things in context.  If the lesion needs to be dealt with, and can be dealt with in his office, that's one thing.  If hospitalization is required, that's something else.  I'm open to debate but right now, I'd rather load him up on morphine and let things take their course than put him through another big intervention.  All speculative now, of course - we'll see what Dr. L says and what he finds.

Any of these things could turn out to be major, but until they are, they're not.  Meanwhile, the bureaucratic fronts are quiet for the moment - all the outstanding questions seem to have been answered and all the paperwork seems to be where it needs to be.  I'm mostly done with his taxes and the taxes for the trust.  E and M are in place and doing their jobs.  It could be worse.  It will be worse - but with luck, not yet.  I appreciate breathers when I can get them.  I don't expect them to last anymore.  But I'll take them for what they're worth.

Comments

[Rachel]

Hi, Alan!

I'm out here at my dad's now -- shocked at the deterioration in the past two months. We went to the urgent care center on Friday, to rule out infection or anything. Found nothing, so we got a prescription for a low dose of Seroquel, which hopefully will help with the night-time agitation.

Which seems to have increased dramatically in the past couple of weeks. One night his caregiver called 911 because he was violent and threatening suicide if the caregiver didn't take him "home" -- of course, he is in his own home now. And of course, once he was at the ER he appeared calm and just wanted to go back, so they sent him home.

My first two nights here there was extreme yelling in the night. Scary. And we had about a 30-hour period where he didn't recognize me as his daughter. He mainly thought I was a nurse's aide. (But he liked me -- he told me he thought I'd be a good nurse someday.)

And he's having more problems with the transfer from bed to wheelchair and back.

It's become increasingly clear that this environment is not working for him anymore, and it's even becoming clear to him. He is now very eager to come live near me in "Virginia", and was very upset with me that we couldn't go right now. And I've found, I hope, a room in an Alzheimer's dementia unit in the DC area. The big question is how to get him from here to there. Smaller questions of things like TB shot, furnishing the room and moving whatever personal items, and getting the business stuff done.

I am terrified that, even though this place says they can handle anything, that what admissions is telling me will not hold true if he starts yelling there or if he's too difficult to maneuver. Then I've moved him out of a paid-for house and where is he going to go? But I can't imagine they'd just throw him in the street at this point.

I'm also a little scared because of the amount of money involved. He's probably at the low end of being able to afford this place, and they don't take medicaid when his money runs out. But at his rate of decline, by that time, if he survives that long, it won't matter as much what environment he is in. I'd like to check with a financial manager type, but I feel like I've dragged my heels enough.

Maybe it's already at the point where I won't be able to get him to Virginia, physically, now that he's willing. Maybe it will have to be someplace here. But it's going to have to be soon, I think.

[Alan G. Ampolsk]

You're ahead of me in dealing with the transfer issues - as you know, I'm behind the curve, and now I'm likely to fall still farther behind while I deal with his new medical issues up in New York.

I hear you about all the concerns - I'm too overwhelmed to start on the transfer at all. I doubt the residence would put him out on the street, but you might want to confirm with them how they'd handle a worst-case scenario - would they help you out with a local transfer or leave you on your own to manage it?

I know it's a lot to deal and it seems like a burden to add a financial manager to the mix, but maybe an elderlawyer can help guide you through some of the broader financial issues.

As to the physical transfer to Virginia - someone who posted here a while ago suggested that on my New York-to-Maryland transfer, I put him in the back seat with an aide and dose him heavily with Seroquel. I'm open. Something to think about, for what it's worth.

Continued good luck and please keep us all posted.

[Rachel]

Thanks, Alan!

While my dad's memory and reasoning keep failing, he is somehow holding on to "when am I going to move out there?" So I'm simultaneously trying to move forward with all due haste and still put the necessary pieces together.

Putting him in a back seat was tempting a few months ago, but with his difficulties transferring from chair to bed, I don't think we'd be able to get him in a car, and then it would be 12 hours of uncomfortable sitting.

The GCM in Chicago recommended a nurse who has a service accompanying the elderly flying, so I think that's what we're doing. Faster than airline ambulance, and hopefully the presence of a Nurse will keep him calmer. And she knows all the ins and outs of getting through airports quickly, dealing with wheelchair, etc. Of course, she also wants clearance from his doctor -- lots of difficulty getting medical info from here to there.

I talked to the GCM out here that you also spoke with. Seems nice. Comprehensive. I told her about my fears about Something Going Wrong, and she laid out this-and-that as possibilities, which made me feel better. (Just wish she were more metro accessible!)

The care facility referred me to a financial planner, who is looking at that aspect, but I still need to talk with an elderlaw attorney to discuss sort of the broader Medicaid/tax/estate issues.

Someone else has expressed an issue in the room at his new place, so we now need to go from top-of-the-list to signed-and-sealed.

On the one hand, momentum is on the side of this, but it's still scary to think of signing the paper.

On the other hand, the current situation is more and more untenable. It's either this or a place in Chicago, which has its appeal but would be difficult at this point, barring hospitalization. And while I know sometimes we have to lie, I can't tell him this can't happen.

I do hope he can keep it together for another couple of weeks. I call him every night, but today I got a call during the day with him complaining about the caregiver, saying this was an emergency situation because there was no food, no drinks, and I needed to do something about this now. I keep asking him to hang in there another 12 days, 14 days, 7 days, 10 days.

And I hope he'll adjust after he's here. One complaint a couple of days ago was this requirement to eat at a certain time -- of course, with his one caregiver, I know that that's not happening, and I know that when he moves into a facility there *will* be pressure to eat at a certain time.

But by then the rubicon will have been crossed, won't it?

Thanks for listening.

[Alan G. Ampolsk]

I'm probably repeating myself but... just keep reminding yourself that there are no good alternatives. You're just choosing among bad ones. And the situation has a life of its own - you're not going to be able to influence it that much. I realize that sounds depressing as hell but for some reason I find it comforting. That might just mean I have a strange way of comforting myself.

Last night my father told me he'd consider moving to Washington if it meant he could help me in my business. That might give me the fiction I need to get him through the move ("The thing that would be most helpful in the business is if you could join my staff here in the nursing home and they'll hvae some assignments for you...") If, that is, all the other stars align, and if I can bring myself to tell him that...