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 agitation/delusions/hallucinations 
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post agitation/delusions/hallucinations
Mom -in the late stages of LBD- has in the last two weeks suddenly been continually agitated-talking nonstop when she is not asleep. It is the kind of talk where we can't make out much of the words and seems not reality based. Dr. prescribed Seroquel 1-2 tabs a day- we have been giving 1/2 tab morning, noon and night but not helping much that we can tell -just puts her to sleep for awhile after she takes it. Prior to this development she had Cellulitis that required several rounds of antibiotics to clear ( during which her mobility took a nose dive but has since come back ). She is refusing to do even the regular trips to the bathroom in the last couple of days -seems totally out of touch with reality -this is all so sudden - I am at a loss. Have others seen this sudden psychosis? I was of the opinion we should continue the Seroquel long enough to see if it would help -but now I'm afraid it is making things worse. Her Dr. has suggested several options - none of them easy- inpatient in another town, if that would help I would do it, but hate to put her through more than I have to. Any input appreciated!


Mon Mar 21, 2011 1:33 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: agitation/delusions/hallucinations
When people say "sudden" to me, I immediately think of infection or medication changes. Can she be checked for a bladder infection??

It sounds like you've spoken with the MD since the sudden onset. He had no changes to offer as far as medication was concerned....?

One way Seroquel "works" is by putting the person to sleep! Perhaps you can adjust the timing and dosage of the Seroquel -- 1 tablet at night, and only a half tablet at noon.

Alternatively, perhaps you can ask the MD for an alternative to Seroquel, if you suspect it's causing the problem. One alternative is Clozaril, but it requests frequent blood tests.

Is she taking any AChEIs for the psychosis? (Aricept, Exelon, Razadyne)


Mon Mar 21, 2011 1:59 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: agitation/delusions/hallucinations
My Dad is the opposite - he does not say much, but when he does, it is always negative, is usually shouted and demanding. He is on 25mg of seroquel 3 times a day. In the beginning the seroquel used to make him sleep, but his body adjusted, and now does not sleep with them. I find the seroquel calms him, and helps with the delusions.

Last September, I found that when Dad had a chest infection, it knocked him out - his walk was badly affected, and his delusions and hallucinations were worse. He needed 24 hour care. But after a few weeks, he started to come around again, and is able to get to the bathroom by himself. Now, having said that, he has not recovered to the quality of life that he had before the infection, but he did rally around somewhat.

My advice is hang in there for a little longer with the seroquel and see what happens. I know everyone is different, and what works for one will not work for another. Best of luck, Ger

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Mar 21, 2011 2:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: agitation/delusions/hallucinations
I think Seroquel either works right away or not at all. Ask the doctor about trying something else. Stay away from Risperdal, however.

If she's just finished several rounds of different antibiotics it's not very likely she would have a bladder infection [unless it was resistant]. It's possible she might have some kind of yeast infection that cropped up as a result of the antibiotics. Some antibiotics have triggered exacerbations in dementia patients, too. You really can't win, can you? :cry:

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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.


Mon Mar 21, 2011 2:52 pm
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Joined: Mon Mar 14, 2011 12:23 am
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Post Re: agitation/delusions/hallucinations
Thanks Pat-amen to sometimes you just can't win! Will call gen Dr. now to see about checking infections again -I remember last year my Dad had a prostate infection that didn't completely clear with many many antibiotics -when they finally cultured the bacteria they found it was resistant to all but one -when he finally got on that he was a new man after suffering for almost a year.


Mon Mar 21, 2011 4:03 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: agitation/delusions/hallucinations
Risperdal helps some, so I wouldn't exclude it.


Mon Mar 21, 2011 4:17 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: agitation/delusions/hallucinations
Cara, I'd suspect an infection of some kind. That has consistently proved to be the case when Coy has shown a decline or sudden worsening of symptoms.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Mar 21, 2011 5:52 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: agitation/delusions/hallucinations
Cara,
I also suspect infection , as I understand your first note the seroquel was started because of this behavior, do you think it is getting worse with the seroquel ?

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Irene Selak


Mon Mar 21, 2011 7:07 pm
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Post Re: agitation/delusions/hallucinations
I made a Dr appointment for Thursday to get it checked out -felt better after I made the appointment- I feel like a detective with so much of this. Irene - we did start the Seroquel because of the sudden and unrelenting agitation etc. Her agitation seemed to get better then was back full force - recedes and then reappears - so I can't really say that it is better or worse -does that make sense?


Mon Mar 21, 2011 9:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: agitation/delusions/hallucinations
I hate to say it, but there is not much that makes sense in these neurological diseases from what I can see, especially LBD. What works for one, doesn't work for another. What happens one day doesn't happen again. Just when you think your LO is stable all h&)) breaks loose and you have to start over again with diagnoses, meds, behaviors, etc. They have a huge decline and never regain their full abilities no matter how many meds or how many hours in PT and OT. "The only thing constant is change." That about sums up life with LBD. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 21, 2011 11:04 pm
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Joined: Mon Mar 14, 2011 12:23 am
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Post Re: agitation/delusions/hallucinations
I just wanted to update you all on what we found out. Since my inital post Mom has been to her regular Dr. who found nothing, and to her neurologist who recommended and inpatient stay at a geriatric psych unit. We did have her admitted last week to see what could be done -she was to be there for a week- a few days after admission we got a call -they did an x ray of her abdomen and found her bowel terribly enlarged, they said there is no treatment that she could with stand and that over time her colon has all but quit working -something called Ogilvie syndrome. The Dr. described it as a floppy bag -no longer pushing through waste products. We have taken her home an will arrange hospice tomorrow. It may be just a matter of days up to a month. I have never heard of this before and am stunned and grieving and working to get Mom comfortable. I wanted those of you who heard the beginning to know the outcome and encourage anyone who is seeing a sudden change in their LO to pursue the medical causes! It is so hard because they can't verbalize to us what is wrong.


Sun Apr 24, 2011 11:40 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: agitation/delusions/hallucinations
Cara, thank you for taking the time to update us.

I am very sorry for this turn of events. I hope with Hospice's help you can get your mom comfortable and that your last days with her will be peaceful and loving.

Hugs to you.
Jeanne

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Apr 25, 2011 12:04 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: agitation/delusions/hallucinations
Cara, I am sorry to hear about your mother. Did the doctor say the megacolon was in any way related to LBD?

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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.


Mon Apr 25, 2011 12:08 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: agitation/delusions/hallucinations
Cara,
I'm sorry to read this news, but am glad you'll be getting hospice's help soon. I hope you can make your mother comfortable.
Robin


Mon Apr 25, 2011 12:46 am
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Joined: Mon Mar 14, 2011 12:23 am
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Post Re: agitation/delusions/hallucinations
thank you all - Pat the Dr. didn't say anything about its relationship to LBD, but I did read one of the underlying causes can be Parkinson's. He did say it could have been aggravated by the Seroquel but had been developing for awhile and I would agree we had charted a slow down in her bowel movements -thinking constipation and did the usual increase fiber and fluids. While she was in the hospital there was a noticeable distention of her abdomen -it has since gone down some. We had a beautiful Easter day with her today -she was in good spirits-slept alot but responsive when awake. Ate very little except for the strawberry shortcake -that she ate all of :) Tonight she is upset- loud unintelligibly talking and unable to be calmed -won't take her meds for anyone and seems to be in her mind back in the hospital -saying "they won't let me out of here." They sent us home w/o pain meds- so I am anxiously awaiting hearing from hospice tomorrow.


Mon Apr 25, 2011 1:14 am
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