Friday night he seemed wonderful - "wonderful" being a relative term under the circumstances, but you know what I mean. He was relaxed and genial and there was a substitute attendant he really liked - an East European woman who was warm and maternal and seemed to have a sense of humor (always key in working with him). I talked to her by phone and liked her too. I have a weakness for Eastern Europe - something genetic at work, possibly. I sent a favorable e-mail to M. I usually complain about the rotating attendants, and here was a good one, maybe worth keeping.
Saturday morning I woke up to a voicemail that had been left on my cell phone at 1 a.m. Thankfully the phone didn't ring. On the recording, warm maternal East European attendant was pleading with me - "Please call, please call, I don't know what to do with him, I can't control him..." In the background he was ranting along the lines of, "Now, listen to me, you goddamn bitch!" And then she was talking to him - "You don't talk to me that way, no one talk to me that way, No! You do not hit me! You do that again, I call 911! My husband is here! My husband is here!" End of message.
I decided not to call back. It was after 8 a.m. and there were no follow-up calls, so I figured one of two things had happened. Either she'd gotten it resolved somehow, or they were both dead on the floor. If the latter, E would probably call me as soon as she came in. But she didn't. So I decided not to stir things up and wait for evening. Once I would have rushed to intervene. You live, you learn, you get diminished...
By Saturday night he was calm and cheerful again. The reason? E had decided to go without the evening Seroquel dose, and cut him back to 25 mg. M was a little peeved that she'd done that on her own, without consultation. I can understand that. But it seems that he'd been trying to hit East European attendant with his walker - which is a fairly heavy model that could do some damage. Improvising the dose seemed called for.
So now we're a bit stuck. He gets violent on the 50 mg Seroquel. But he gets agitated and almost as violent on 25 mg Seroquel. Since July, Dr. B has moved him up to 50 mg twice, and the on-site caregivers have cut him back twice. M suggested that 37.5 mg might be right - we could manage that by cutting one of the tablets in half. But a decision will have to wait for Dr. B, who's on vacation, this being August in the world of medicine...
Meanwhile, I'm swimming in paper. This will only get worse. Yesterday I finally caught up with the accountant. We spent 40 minutes reviewing the Maryland elderlawyer's plan for setting fire to the assets. The accountant, of course, has an alternate plan - so I've had to take that back to the elderlawyer. Meanwhile, my wife needs to meet with her agency's ethics office to make sure we're taking the right steps to blind the trust. Until I hear from them, I'm holding off on the nursing home application. I think it's highly unlikely that I'll be told it's impossible for me to burn the funds to the ground - it's more a question of how best to do it, and how to satisfy the requirements of all the parties involved. But until I know for sure that I can draw on the accounts, I can't commit to a nursing home transfer. I can't move him unless I know I can pay his way through to October 2012 (after that, Medicaid can pay for him for the three months before the world is destroyed at the end of the Great Cycle of the Mayan Calendar). I'm sure it'll all work out. Until I'm certain, however, I'm going to be conservative. I want to wait 'til the path is completely clear.
Until then, it's back to the evening phone calls, and a dinner visit next Monday. And, of course, the ongoing game of Seroquel roulette.
Hi Alan,
I'm just wondering if your father has been tried on Lorazepam which is for the agitation and anger? We have found with my husband that 25-50 mg of Seroquel and 0.5 to 1mg of lorazepam works wonders in maintaining a more even temperament. I talked with a lady that operates an assisted living home here and that was her recommendation also. We got the lorazepam RX from our primary care doctor when he was becoming violent with me. He does sleep more with the two drugs but a little more sleep is an improvement over raging man. And when he wakes up he is all smiles and pleasant. It is a generic version of Ativan. I'll be curious to know.
We toured our first nursing home and I couldn't stand the thought of leaving him so I have hired some private care CNA's to come in and help me with his care to try to keep him at home a little longer, at least till I'm ready. So far he is on his best behavior with the gal and she can get him to go for walks and get up in the morning for breakfast so she is doing better than me at this point. So we carry on and we will see how it rolls.
Posted by: julie | August 20, 2009 at 12:17 AM
That's a great suggestion... except that we've had to list him as allergic to Lorazepam. There was an episode when he was hospitalized almost three years ago. He had his usual sundowning episode, and someone on the staff decided to dose him with Ativan. The result was three days of full-blown paranoid hallucinations. They were so persistent that on Day 3, I finally had to tell him he was hallucinating - a level of truth-telling that I almost always try to avoid. For the record, he was pretty cheerful about it - actually somewhat amused that the big fistfight in his room and his subseqent abduction weren't real.
I remember also the extremely condescending young house staff physicians. On the first day, when my wife and I told them we'd never seen him like this before, they smiled and said, "Oh, okay..." In other words, let's humor the family, they're obviously in denial. At the end of the day they came in looking sheepish and said, "We've just looked at his chart and it seems that somebody gave him Ativan..."
So ever since, we've kept him off it. Maybe it's worth revisiting at a low dose, but I'm reluctant to go there. Makes me think we're stuck walking the line on Seroquel and trying to keep him between the low-dose rage and the high-dose rage...
I'm glad to hear you've got some help in. Your reaction to the nursing homes is understandable, though it may also be a reaction to particular nursing homes. I'm guessing you don't have too many choices in your geography, but if you do, it might be worth looking at more. I'm feeling OK about my likely choice - but couldn't imagine leaving him at some of the others.
As always, hang in, and keep us posted.
Posted by: Alan G. Ampolsk | August 20, 2009 at 02:27 PM
Oh......well then, that sucks! I wonder if there are any other drugs of that nature that might be
tried? I'm hearing that Seroquel is a very strong drug and is good for what it is good for. Perhaps, though, that is not your fathers issue. I'm just throwing out ideas here but if I'm not wrong, I believe Seroquel is an antipsychotic. I wonder if his episodes could be handled with more of a calming type agent. I think we are all just bumbling about in the dark here trying to find some way to smooth things out for our persons and perhaps we make a lot of mistakes in our attempts but at least we keep trying, eh? Sorry there are no easy remedies for your dad or you but, as I say, carry on like you do.
Posted by: julie | August 20, 2009 at 06:58 PM
"actually somewhat amused that the big fistfight in his room and his subseqent abduction weren't real."
God love him...
MIL could probably use a tad more medication, she's really paranoid about the "thieves who come in my room when I'm asleep" but she can't tolerate anti-psychotics. When she was first diagnosed a few years ago she was put on Aricept and one other medication (which I can't remember now) and she had a severe electrolyte imbalance, crazy reaction, she was hardly conscious for 5 days, had to be put in diapers, she was almost completely non-responsive. We don't dare try and give her any more than she's on right now, which is too bad, because she must be miserable thinking that people are stealing from her all the time. Her doctor is afraid to give her anything to calm her down.
Posted by: crella | August 21, 2009 at 12:23 AM
Julie -
Interesting. A calming agent sounds right, an antipsychotic sounds, on the face of it, like overkill. I don't know enough to judge - but it's something to put to Dr. B when she gets back. Definitely worth following up on.
Crella -
We've had the hallucinatory episodes, but run-of-the-mill rage seems to be the bigger problem. My father doesn't seem to be all that drug-tolerant, so it's hard to figure out what works. I sometimes think that we might be able to get at some of this nutritionally, but no one in the caregiving establishment is all that versed in nutrition - and then, of course, there'd be the problem of getting him to eat. Not looking for cures, of course, just something to smooth the path a little. We'll keep looking for what might work...
Posted by: Alan G. Ampolsk | August 23, 2009 at 06:06 PM
Risperdal is an alternative to Seroquel and is often used for severe anger and agitation.
Some people do NOT respond well to Seroquel. Your dad sounds like one of them!
Posted by: Flouncy | August 30, 2009 at 08:54 PM
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