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 uncontrolled behavior 
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Joined: Sat Oct 27, 2007 9:16 pm
Posts: 165
Location: tennessee
Post uncontrolled behavior
Does anyone know what happens when behavior cannot be managed? If the premorbid personality has certain controlled issues that now with the disease process and what the psychiatrist calls "disinhibition" are now no longer controlled by the patient, and the medication can't control it without triggering rigidity and no one can handle him, do we progress to heavy sedation and terminal zombiism? I really fear the future, not because of the inevitable death process as terrible as that sometimes is, but because of the worsening of the stage we're in. He acts inappropriately and is corrected, then becomes furious then acts that out verbally and physically. The facility is excellent, the doctor is skilled, experienced and empathetic. Everyone is doing great but the patient! And me.

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Would have despaired...


Wed Oct 22, 2008 5:18 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Sorry to hear about this. And you're sure that a med like Haldol isn't involved?? Have they tried Clozaril, an atypical antipsychotic? And Seroquel?

I think that some facilities can handle disinhibition. My impression is that they resort to heavy sedation if the patient is a danger to himself or others.


Wed Oct 22, 2008 8:29 pm
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Joined: Sat Oct 27, 2007 9:16 pm
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Location: tennessee
Post behavior
He's on seroquel just changed it to 3 times a day, still a fairly low dose so hopefully we can go a while on that. No he hasn't had any of the bad drugs. He was on abilify for a while, had to be taken off for rigidity then went on seroquel. He's determined to have a girlfriend and defies the rules. I don't know, I'm just panicking here and need to get myself under control. I hate to see him keep shooting himself in the foot like this, and I can't even tell myself, "this is just the disease" because it's him--with the disinhibition caused by the disease. He's also lost his fear of consequences, which is a huge problem. That's what I'm afraid of, the consequences. He's been told, one more girlfriend (he's had 5 now, I think) or one more physical altercation, he's out of there. And, there's no good place to go. Thanks for answering, Robin

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Would have despaired...


Wed Oct 22, 2008 9:25 pm
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Joined: Sat Sep 23, 2006 1:12 pm
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Post Disinhibition or disease?
Hi Melinda. I don't know if you are the wife or other family member.
Yes, If he was difficult before it can be disinhibition. But as a member of the Yahoo LBD Spouse group, so many of us have seen the nicest, mildest, most polite men (usually men) turn into savage and at times dangerous monsters, with threatening and murderous behavior. And girlfriends. So it's hard to say which is which. The facility doctor calls it disinhibition but perhaps he is used to Alzheimer's diagnosis.
All I can say is: MORE Seroquel. There is a trend now for facilities to use less because it has gotten bad press and can be dangerous. But for me, and many others, it is quality of life over quantity. My husband would never want to be the angry, aggressive person he became. He was up to 325mgs per day. Yes, he was zombified. But I was respecting who he HAD been.
Anyway, as time passes, the dose was lowered. This seems to happen too. He is currently on no Seroquel at all. But that took about 3 years.


Tue Nov 11, 2008 1:40 pm
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Joined: Sat Oct 27, 2007 9:16 pm
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Location: tennessee
Post behavior, disinhibition
Iffy, I'm the spouse. Thank you for replying. Someday I'm going to have time to figure out how to get on the spouse group. The doctor I referred to is his psychiatrist who is real up-to-date on LBD, although I think I diagnosed it first because of this site! Seroquel it is, Just heard there is a slow-release version, anyone familiar with that? The psych told me last week twice, "this isn't going to be a problem much longer" and "pretty soon this won't be an issue". I was scared to ask what he meant. I think maybe just that he would be so medicated because he's getting worse that he wouldn't care about the women and wouldn't be able to hurt anyone. I don't think he meant he'll die soon, because I don't want to think that. He's broken my heart in so many different ways, some of which he could control but chose not to, but I still love him so much. "Love keeps no record of wrongs." Melinda

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Would have despaired...


Tue Nov 11, 2008 2:34 pm
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Joined: Sat Sep 23, 2006 1:12 pm
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Post Psychiatrist
Hopefully he just meant what I wanted to say to you but didn't want to inundate you with information: At this stage my husband is just too out of it, too frozen by the parkinson's and unable to express himself. That's why he doesn't need the seroquel anymore.
Maybe that's what your doctor meant too.


Tue Nov 11, 2008 4:04 pm
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Melinda,

I'm sorry for your problems. My mother went from being the sweetest, kindest person in the world to a biting, kicking, hitting, hissing maniac under the influence of LBD delusions. I'm glad you and your husband's psychiatrist are trying different atypical antipsychotics. Seroquel is apparently the first option and works well for many people. It didn't for my mother. We went through Seroquel and Abilify before finding success with Risperdal. Robin says our case -- happy with Risperdal (which I'm probably misspelling) -- is rare, but for us, it's a godsend.

Just don't give up.

Garnet


Tue Nov 11, 2008 6:34 pm
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Location: SF Bay Area (Northern CA)
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Garnet -
Your mother is unique, as you've said! Spelling looks good too.
Robin


Tue Nov 11, 2008 7:04 pm
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Joined: Fri Feb 16, 2007 6:13 pm
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Location: Fayetteville, AR
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I hope I never get violent because I'm a very big, very strong man. I have never been violent in my life, but this disease is strange. When I was a pastor, I used to visit a woman who had Alzheimer's. She was a sweet, kind, gentle old lady -- but sometimes she'd come on to me and say the most vulgar sexual things -- things I'm pretty sure she never actually said before the disease! Her poor husband was mortified. It never bothered me because I knew it was the disease and not her.

I have experienced some disinhibition. I didn't know that was part of LBD. Sometimes I'd come out of the shower and just walk around naked without a care in the world. My kids were so embarrassed. My wife would just hand me a towel and usher me off to the bedroom to get dressed. Thankfully, by the time I started to do that, we already knew I had some major problem with cognition and delusions and such. Increasing my Seroquel made that problem go away.

I wasn't trying to be inappropriate or anything. Honestly, it just didn't occur to me that I needed to put on clothes. I remember having some trouble understanding why my kids were so upset and embarrassed. I'm grateful that my wife was able to handle the situation in a straightforward, common sense way of just redirecting me and explaining to my kids that it was the LBD making me forget to get dressed.

Randy


Sat Nov 15, 2008 12:57 am
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Joined: Sat Nov 13, 2010 12:44 am
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Post Re: uncontrolled behavior
Here is my dilemma...My mother has always been a very strong willed Italian woman. I had to put her in a nursing home due to falls and delusions/hallucinations. She is on koumadin (sp) for a pacemaker and has and she fell early on in the nursing home. This nursing home had known her in the past for rehab for her pacemaker so they know her personality. She is perplexing them. She has been sent to ER for unsafe/uncontrollable behavior (ie hitting, throwing) . I noticed weight gain on her because she eats well but it is also an edema. She is sweeled up. She has been uncomfortable and nasty with me this week...name calling etc... I just don't know. She hasn't been on since she has been there. The more I am there the more she seems to get nasty when I'm not.


Tue Nov 16, 2010 1:57 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: uncontrolled behavior
I don't have any advice for you. I just wanted you to know that my mother also became a difficult person toward the end. She passed away in September at 104. She bit her caregiver (making her arm bleed) and then told us that they hit her. (I suspect they did but there were never any bruises or evidence.) She was angry about everything and she lashed out. I believe that behavior isn't all that unusual.

That may be why so many nursing homes sedate the patients. Dale's mother was heavily sedated in a nursing home for several years and when we would visit, she was always totally 'out of it.' When Dale's father died, we decided to take her to the memorial dinner. The home knew what we planned so they didn't sedate her the day before. They dressed her in the new clothes I brought. We couldn't believe the change! She was a totally different woman. She had a very nice time and a last opportunity to be with the whole family.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 16, 2010 8:00 am
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Joined: Tue Aug 17, 2010 9:20 am
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Location: So Cal
Post Re: uncontrolled behavior
My husband (now 65) had started the violent behaviors and was put on Seroquel. Over a period of time the dosages were increased to and remain at: 25 mg AM, 50 mg noon and 200 mg night. He is alert all daytime hours and sleeps through the night. He has returned to his sweet self, although sometimes gets a bit gruff and agitated, but nothing that redirecting cannot solve. I know that not everyone is the same but if you are afraid the Seroquel will make him a zombie, I say give it a try. Ken slept a lot during the day at first, (which, frankly, was a welcome respite) but as I said has gotten to the point that he is doing fine all day long. Good luck and keep us updated, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Nov 16, 2010 10:08 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: uncontrolled behavior
Seroquel helps my husband. His doctor recently increased his dose. His behavior is calmer and he has fewer hallucinations. It doesn't do anything for his constant delusions, though.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Nov 16, 2010 10:26 am
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Location: Ocala, FL
Post Re: uncontrolled behavior
We are still at 100 mg Seroquel before bedtime. That works for us during the night. I've just decided that the daytime delusions and hallucinations are here to stay and I might as well get used to them.

I've been re-reading Dementia with Lewy Bodies published by Taylor and Francis, 2006. It is a compilation of the work of a number of contributors.

One of the observations in the book, which I found interesting, was that hallucinations and delusions seem to be more often associated with darkness and when the patient is alone than when the patient is with others in a lighted room.

I've noticed that when Dale takes a nap in a dark bedroom, he frequently comes out of the room with an elaborate story to tell. There are 'people' in the closet or 'the bad man want to do an audit of our finances.'

I'm not sure how to correct this because Dale does not want to nap in a lighted room. He prefers the darkness. And he can't always have people around - though he would prefer that I take a nap with him.

I find it fascinating that he rarely has delusions or hallucinations outside the house. It may be confirmation of this theory.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 16, 2010 2:26 pm
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Location: WA
Post Re: uncontrolled behavior
Quote:
One of the observations in the book, which I found interesting, was that hallucinations and delusions seem to be more often associated with darkness and when the patient is alone than when the patient is with others in a lighted room.
Leone, that's very interesting because just last night, we had a 2.5hr power outage due to wind and our house was dark except for a big candle I lit and a flashlight. ODDLY ENOUGH, my husband was much calmer than usual!!! I was remarking on that this morning to a neighbor who wondered how he did during the blackout. During the time he is usually pretty agitated, having the most hallucinations and fixated on his delusions, he was almost serene! Go figure! :roll: I may turn the power off every night! :lol:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Nov 16, 2010 4:42 pm
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