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 Extreme hallucinations and delusions 
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Extreme hallucinations and delusions
My mom, who has not yet been diagnosed, is having extreme hallucinations and delusions. She isn't violent, but I can't keep her in the house. She hasn't slept for more than a couple of hours in 4 days. We are waiting to see a new neuro, so I wonder what I should do in the mean time? I afraid if I take her to the hospital, she will end up in a psychiatric facility. I am concerned for her safety though. Any advice?


Thu Mar 31, 2011 3:36 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Extreme hallucinations and delusions
What worked with Dale was calling on others to help. My male neighbor would walk Dale around the house - talking with him and calming him down. My sister was always good on the phone. She is a retired elementary school teacher and that background helps!

Don't call the authorities ... unless you have no other options. Neighbors and relatives can be a God-send.

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


Thu Mar 31, 2011 3:43 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Extreme hallucinations and delusions
hi.. i know how scary those can be... can you call the nuero office and explain what is happening and ask them if you can get on an emergency basis.. just to get soemthing to calm her down?? i found with hubby, the less sleep he gets, the worse the hallucinations are.. so hopefully they can see her just to help her relax.. please make sure you see the meds to stay away from, before giving ...
there is a list on her but sorry not sure exactly where..

good luck.. we are thinking of you and her..
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Thu Mar 31, 2011 4:25 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Extreme hallucinations and delusions
Keeping things as calm as possible, will help and yes I would call to see if that appointment can't be moved up and explain the reason you don''t want to go to an ER with her what your fears are.

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Irene Selak


Thu Mar 31, 2011 10:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Extreme hallucinations and delusions
Will any of your mother's MDs (primary care physicians?) prescribe any of the medications recommended by Dr. Boeve in his 2004 "Continuum" paper for the treatment of hallucinations? First line treatment is an AChEI (Aricept, Exelon, Razadyne). I would think even a PCP would prescribe that medication. Next would be Namenda. Next would be the atypical antipsychotics, such as Seroquel. But I wouldn't go there (antipsychotics) until you've tried an AChEI and/or Namenda.

There's a study posted here that indicates Namenda is helpful in DLB but not PDD.


Thu Mar 31, 2011 11:54 pm
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Re: Extreme hallucinations and delusions
I have nothing to offer to all the good advice posted except I do think Aricept and Namenda held off my Mom's hallucinations in the early to mid stages. She is no longer able to move without assistance but is once again experiencing all that plus agitation -I do know the feeling you are going through, it is awful to witness. I was able to get an increase in her Aricept dose and Seroquel over the phone from her Dr. We too sometimes have luck with having another person call and talk to Mom on the phone or a change of scenery. However when it gets going full blast and for such a long time only meds seem to break the cycle for her. It is so frustrating -but keep trying to get through to her Dr. with the urgency of this - I too feel the emergency room route is not especially productive.


Fri Apr 01, 2011 2:15 am
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Extreme hallucinations and delusions
I spoke with the neurology office and they were not able to see her sooner, but they are placing a call to her PCP to advise them on what meds the neurologist recommends. Hopefully the PCP will call something in for her shortly. How long should I expect it to take for the hallucinations to improve? (I guess that would depend on what meds are called in.)

Thank you all for your advice and support!


Fri Apr 01, 2011 10:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Extreme hallucinations and delusions
Amanda,
I am glad you were able to get some results from the Neuro's office, at least they are wiling to work with the PCP, Good Luck !

Don't wait until the end of the day if you haven't heard anything yet, sometimes we have to make reminders, its Fri and if nothing happns you will be stuck all weekend !

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Irene Selak


Fri Apr 01, 2011 12:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Extreme hallucinations and delusions
Amanda,
Please refer to Dr. Brad Boeve's "Continuum" paper from 2004. You can find it on lbda.org.
Robin


Fri Apr 01, 2011 12:40 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Extreme hallucinations and delusions
I just wanted to let you all know that the dr called in Aricept and Klonopin for sleep. Thank you all for the input and support!


Fri Apr 01, 2011 4:40 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Extreme hallucinations and delusions
Goodness knows I hope it helps !

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Irene Selak


Fri Apr 01, 2011 6:48 pm
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Re: Extreme hallucinations and delusions
We have noticed with Mom that pain and infections (especially a UTI) will really set her off. Delusions and hallucinations are pretty normal for her but when shes sick its much worse. I would also recommend a check up by her Doctor also.


Mon Apr 04, 2011 8:23 am
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Extreme hallucinations and delusions
My mom had one good night's sleep and a few lucid hours yesterday, but not much improvement otherwise. We are going to see her PCP because on top of this her legs and feet are very swollen. I'm concerned that there may be something going on with either her heart or kidney's.

Thank you all.


Mon Apr 04, 2011 2:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Extreme hallucinations and delusions
My husband developed swollen legs and feet in 2008 when he developed post-renal failure due to inability to empty his bladder--just dribbling. This causes obstruction in the kidneys. He has had an indwelling catheter ever since and no edema. Sometimes PD or LBD can cause what is called a 'neurogenic bladder'. Do you know if your mother's urinary output is adequate?

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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 04, 2011 3:00 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Extreme hallucinations and delusions
She seems to have normal output, but I can't be certain. I thought of getting a urine collector and putting on the toilet so I can get a more acurate measurement. She won't drink water and only wants soda, which I'm sure doesn't help. Soda is the one thing she really loves and I hate to take it away from her too. I did get her to drink some cranberry juice mixed with a little water and apple juice though.


Mon Apr 04, 2011 3:17 pm
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