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 What to do about hallucinations 
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Joined: Sat Sep 03, 2011 2:23 pm
Posts: 2
Post What to do about hallucinations
Hi

I am new on this forum. The reason I am here is that my aunt has been diagnosed with LBD and has many hallucinations, which are very hard on her. She keeps seeing people sitting in her apartment and is very upset about it, even though we have tried to tell her over and over again, that they are not real (I would be upset myself too). She even makes coffee for them. We have tried to tell her that she has a disease which influences her brain and that is the reason why she sees people, who are not real. She has been given three different kinds of medicine but it seems that there is no real improvement. Some times she has a week or two where we think she is better and then suddenly she is worse again. It seems that the hallucinations disappear more or less when she takes a walk or does something else, but when she is in her apartment they reappear. She has no family besides us and we live far apart so it is difficult for us to do much for her other than talking to her at the phone. Do any of you have any advice how it is best to tackle the hallucinations since the medicine doesn't seem to help much? Is some kind of activity the best way?

I would be very grateful for any advice you might be able to give. Thanks in advance.

Fetlock


Sun Sep 04, 2011 2:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: What to do about hallucinations
Welcome, and it is so nice that you are helping your aunt. Others on here are much more skilled at talking about meds so I'm sure you will get responses about meds that are helpful for hallucination issues. Also, if you do a search on the word "hallucinations" you will find many, many postings about them on this forum. There may be a combination of what she is taking now that need to have the amounts tweaked. Sorry for what you are going through. Lynn

_________________
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.


Sun Sep 04, 2011 2:58 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: What to do about hallucinations
Fetlock:

Read, read, read the forum posts. I always want to tell new posters that, but it seems so obvious, so this is my only time to say that. When I joined, I immediately read all posts that seemed most on point, and eventually read everything.

Your problem with your aunt is not hallucinations, but what is the next step? With no other family, things like POA and other plans. If you are the default person, the sooner you start looking into that the better. Overwhelming, yes, but easier a step at a time.

Her/your situation hits home because I have no family and am trying to figure out my next step now that my husband died. I have been functionally on my own during our LBD journey, but now it's official and I have to plan ahead.


Sun Sep 04, 2011 4:19 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: What to do about hallucinations
Welcome! How kind of you to be helping your aunt, and to be doing research into how to do that. It is difficult at a distance!

What kind of doctor is monitoring her dementia and made the diagnosis? Is this person an expert in the field? If not, could you try to arrange a consultation with someone who is? That can make a huge difference.

Are you in touch with her doctor? I hope she has (or will) authorize you to receive medical information. One thing you would want to ask is whether she has been checked for other problems such as a uti. Hallucinations are a part of LBD, but they can be triggered by infections such as a uti. Rather than just assume they are Lewy activated, it is good to rule out other possibilities.

Often the people hallucinated in lbd are not disturbing or upsetting. They are just there. The person seeing them may want a place set at the table for them, or like your dear aunt, make coffee for them. In what way are her visions upsetting to your aunt? Does she think these people are threatening her or might harm her? Or is she worried she can't offer them hospitality? You and I would be upset at seeing strangers in our homes, but her mind is not operating like ours, and we can't assume she'd be upset for the same reasons we would.

People having hallucinations usually accept them as quite real. Your explanation that they are not real may be upsetting to her. It might be better if you could focus on the part of the experience that upsets her, and reassure her on that particular point. For example, a woman in my local support group reported that her husband constantly saw children in their house. The part that upset him was wanting to include them at mealtime, or wondering how they could feed so many extra mouths, and suggesting they call the church for some help. (He had been a minister.) His wife assured them that the children had good parents who would be picking them up before dinner, or that she'd already given them a snack and she didn't want to spoil their dinner when they got home. That calmed him down. It didn't stop him from seeing children again tomorrow, but she kept helping him through the part of it that was upsetting him. He wasn't afraid of the children -- he was afraid they weren't doing the right thing for these visitors.

I take it that your aunt lives alone. Does she have anyone who visits regularly, like a nurse or an aide or a caregiver? Talking to that person, or to one of your aunt's good friends might be useful. When you have only her perception of things and she has dementia, it must be difficult sometimes to figure out what is really going on!

Bless you for taking on this caregiver role.

_________________
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 Sep 05, 2011 1:05 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: What to do about hallucinations
Hi, Fetlock.

As an auntie with no children or husband of my own, I want to say thank you for caring so much about your aunt. I know my nieces and nephews will be there for me, but I tell them that they have parents that will need their help, too. You're a "good kid" for worrying about your aunt.

Early on, my mom hallucinated about people she knew in her childhood - not necessarily people she was close to. But their presence was benign, so I just asked her to tell me about them. She seemed happy with that. Mom can't talk now, so she can't tell me who she sees, though I know she sometimes sees someone or something. But at the SNF where Mom lives now, there are many residents who hallucinate. They are mostly gentle hallucinations, not frightening them, but concerning them. I've found it easier for both me and for the person hallucinating to accept the hallucination as something real to that person and to "play along." At the moment, I'm going to a wedding (or funeral, it goes back and forth) and attending a dinner party where the Washingtons, the Lincolns, the Kennedys and all of the soldiers of past wars will attend. I also seem to be the daughter of at least three women there, other than my mother.

Accepting the hallucinations and asking your aunt about them, what they are like, are they friendly or polite, did they tell you what their job is, etc. can help your aunt get through the day. Trying to reason the hallucinations away doesn't work very well and, worst case, can make your aunt feel worse than she had before. Knowing she has dementia is really immaterial to your aunt now. She's more concerned about these little people now and what she's supposed to do with them. Maybe they are there to help with chores or to entertain her...

If I may speak for the aunties of the world - I'd like to give you one big atta-boy( or atta-girl?) for the concern you are showing for your aunt.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Sep 06, 2011 12:22 am
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Joined: Sat Sep 03, 2011 2:23 pm
Posts: 2
Post Re: What to do about hallucinations
Hi all and thank you very much for your very kind answers and help.
Just to let you know a bit more on my aunt's situation: She started hallucinating November 2010. She has been checked for uti and cerebral haemorrhage. She has been in hospital to have various examinations and has seen a psychiatrist. She has also had her brain scanned, and the result seemed to confirm the LBD diagnosis. Furthermore a doctor spezialized in dementia has checked her and prescribed Exelon patches for the hallucinations (she cannot tolerate Seroquel). My aunt lives alone so a nurse sees her every day and helps her with the patches. Luckily my brother lives rather close to her and also tries to help her. But of course he cannot be around her all the time due to his job and own private life. The plan now is that the doctor spezialized in dementia and a nurse will visit her in her home here at the middle of September to evaluate her condition. My aunt phones my mother a lot, which is quite all right with my mother. She just wishes that she could help my aunt when she has those hallucinations. We have not tried to ask her what is uncomfortable about the persons, she sees. But we will try to ask her (thanks for the advice). We find it hard to "go along" with her hallucinations, since she just wants those persons out of her room. Sometimes she even says that she is going to kill herself, if her condition continues that way, because she thinks it is unbearable to live like that. She is also afraid that my brother will be "involved" with these persons, so it seems that she thinks they are bad company. My only wish is that we could say something to her or make her do something which could distract her from the hallucinations or at least comfort her and calm her down so that she does not get so upset.

Sorry for the long posting and once again thank you very much for your kind advice.


Tue Sep 06, 2011 2:23 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: What to do about hallucinations
Maybe you could ask her to "monitor" their activities and write them down. Sort of "gathering evidence" so that you can eventually "take them to court." That would give here something proactive to do and give her the feeling that she has some control and will eventually get the "upper hand."

Just a thought.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Sep 06, 2011 2:32 pm
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Joined: Wed Sep 14, 2011 10:16 pm
Posts: 1
Post Re: What to do about hallucinations
This is my first visit to LBD forum. My husband was diagnosed with LBD & Parkinsons in 2010. His condition seems to be advancing quickly. His hallucinations have been constant, however, we have found some medications that have helped but they only help for awhile. He is currently on Clozapine which is the last resort medication for his hallucinations. He started it 3 weeks ago (this medication requires blood work weekly before a new prescription is filled because the medication can deplete white blood cells) and the hallucinations have been cut about 90%. I am so relieved to read of others who suffer from hallucinations. I don't feel alone in this situation. I am his sole caretaker. The hallucinations have been the worst part. All the people in the house are gone except for one woman and all of the people in the trees in the back yard are gone so that he can finally go outside. We were told by his psychiatrist that the hallucinations will never really go away. My heart goes out to all of those who care for loved ones with LBD.


Fri Sep 16, 2011 11:05 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: What to do about hallucinations
My husband has hallucination a good part of the time, too, but they don't seem to bother him. The delusions can be a real problem, though, causing him a lot of agitation.

_________________
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.


Fri Sep 16, 2011 11:41 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: What to do about hallucinations
In the beginning Frank's hallucinations were horrible but now they are fewer and not disturbing. He's been off most of his meds for a few weeks now and I haven't notice any change.

Good Luck, I hope your husband continues to have fewer hallucinations and welcome to this wonderful life line.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Sep 17, 2011 6:42 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: What to do about hallucinations
My mom's hallucinations are worse when she is sick or tired. When she was in renal failure last week they were constant but pretty benign. She usually always sees people that she knows and it's almost always relatives, both living and dead, and she talks to them. She has only had two times in the last year where the hallucinations were frightening to her, so we just go along with them and don't make a big deal out of them and that seems to work with her. We've been really fortunate in this respect and I'm sorry for those of you who are having to deal with really bad hallucinations, it must be so difficult.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sat Sep 17, 2011 10:50 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: What to do about hallucinations
the hallucinations here and the delusions seem to be hit and miss and have no special times they are worse or better.. altho two train trips ave been horrendous.. the first one took me completely off guard as it was the first time ... i had to lay completely across his seat all night, for three nights .. to keep him quiet and on the train( which he didnt understand we were on). and from punching someone. the days were fine.. got a cabin on the way home and it went great!! so this time went with knock out drugs and sleeping pills just in case.. thought it was going to be ok.. surprise.. it wasnt!!! the pills didnt help at all!!for three nights, he was up all night .scared and wanting to leave, and thinking we were going to blow up.... it was horrible.. lesson learned, no more train rides.. wish i could figure out what sets them off, so i could help... is it being tired, new area, etc.. but honestly they happen here when nothing seem different.. they are scary for both of us... small ones or just folks in the room ect.. are ok.. its when he get angry at me for something, that isnt happening., or when he is scared that someone is going to hurt us or we are going to blow up, because a propane tank is going to explode.. and he become very anxious.. im not always able to help him relax.. since he does have ptsd from vietnam. his episodes are sometime very violent and paranoid.. the doc is going to introduce seroquel on the next visit and see if that helps... fingers crossed!!
cindi

_________________
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..


Last edited by cdw on Sat Sep 17, 2011 2:48 pm, edited 1 time in total.



Sat Sep 17, 2011 11:58 am
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Joined: Sun Apr 19, 2009 12:30 am
Posts: 6
Location: San Francisco
Post Re: What to do about hallucinations
My husband also has hallucinations which continue, although meds have helped somewhat. I find that the more active he is and especially with other people, the lesser the hallucinations. I tell him that he has them because he is just lonely when I'm at work and our son is at school.

I no longer tell him they are not there, but when he asks I just say that I don't see them. He says "I hope you never do!"

If there is a local day program, this may be helpful if your Aunt would attend. Otherwise I would contact friends, local family, neighbors, etc and ask them to spend time with her.

Best to you,
Barbara


Sat Sep 17, 2011 2:33 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: What to do about hallucinations
barbara.. you mention you work and your hubby gets lonely.. i'm afraid to leave hubby alone.. and am just starting to look into day care... maybe i'm overly concerned, but once i came home and he was so scared and i felt so bad i had left for an hour.. that now, i'm afraid to leave.. im not sure its time for the day care...(not sure i know when that should happen.)..as some days he does so well.. but its the uncertainty that has me looking.. been basically here most every day, for three years and im being encouraged by my counselor, to give it a try.. for my well being, as much as his...

thanks for your thoughts...
cindi

_________________
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..


Sat Sep 17, 2011 2:55 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: What to do about hallucinations
I hope the Seroquel helps Cindi, what you're going through sounds terrible. As I said, my mom's are usually pretty benign, but there was one time when my sister and I came in the front door she told us the "drug dealers with their guns just left" and handed my sister her lap blanket to "shake it out and see if the diamonds are still there". Pretty strange but that's the worst one she's had so we've been very fortunate. If her's were as frightening as your husbands, I don't know what we'd do. Good luck,
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Last edited by empritchard on Sat Sep 17, 2011 8:54 pm, edited 1 time in total.



Sat Sep 17, 2011 3:01 pm
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