My mother came to live with us 6 months ago after surgery for a second broken hip. She had been having auditory hallucinations for about 8 months and was diagnosed in June with LBD. Her hallucinations have taken over her life and she spends so much of her time tormented. She truly believes that the "marshalls" are coming to take her and prosecute her for crimes she committed as a teenager in the late 30's to early 40's
(She is almost 86 now) She believes that the voices are wired into our house and "they" hear and know everything we say and do. She gets very upset when I will not follow "their" direction on everything from when and how we pay the bills to what clothes she needs to pack to be ready when they arrive for her. When she is in this state she gets very angry if I will not do exactly what "they" are telling her I should do.
I am at a loss as to how to respond to this. The doctor, supposedly a top specialist in the Northeast, refuses to discuss my concerns during the appts as he said this "only fuels the fire" He also refuses to discuss her unless she is present because she "has a right to know what we are saying about ther and this illness"
There is a side of me that feels maybe my family members are right when they say she would be less tormented in a nursing facility where she would probably be very sedated.The other side says that she has enough lucid times that it is woth this hell to keep her in a loving family environment. Any input or experience with auditory hallucinations will be very much appreciated.
Bless us all - I am new to the site and relieved to have found it

Get a new MD, preferably a geriatric psychiatrist who is willing to treat the hallucinations pharmacologically (because they are frightening) and to talk with you outside of the patient's earshot.

Dear MJNolan,
Welcome to the LBDA forums, I am sorry that you have to be here and that your Mother is having such a difficult time, Placing your Mother in a NH is not the answer if you are willing to care for her there with you. I am sure the drugs she would recieve would only make matters worse, I agree with Robin, you need to get her to ANOTHER Doctor that is willing to work with the family, Many Doctors even are willing to recieve e-mail prior to the appointment....... Good Luck!

Thank you both for your responses. I guess I will begin to look into changing Doctors but this one came so highly reccomended by her primary care guy - it is all so confusing.
Also, I had one qurestion I wanted to put out there as I am totally baffled by this - there are many times when Mom is very delusional and I cannot distract her. However, if my teenage son walks into the room she seems to pull herself together so he will not see the condition she is in. Does anyone know how this is possible?
Thanks

Hi! You mention the northeast. You don't happen to be in Connecticut,do you? My dads neurologist is fabulous.On my dads first visit (even before his tests) he said he felt my dad had early dementia with lewy bodies.

With the proper meds my dad is doing a lot better. In the past he has had massive halucinations 24/7 and it was heart breaking to watch.He couldn't even sleep much at night as he was afraid to sleep with all of the strangers in the house. He still has some hallucinations but they are not threatening to him anymore. He has been given a medications that is used for panic attacks and if the hallucinations get bad he takes one of those and it calms him right down.The good news is he hasn't needed on of those pills for 5 weeks now.yeah!

When my dad goes to the neurologist my mom,my youngest sister, and I go along. We ask all sorts of questions and he spends plenty of time talking about everything to all of us.

If you are by any chance in CT I'd be glad to give you the info on him.

In the past my dad was so overwhelmed by the hallucinations I never thought I'd see him act normal again. He saw heads in the garden and felt the police would come to get him thinking that he killed those people.Other days he wantd to call the police and try to get them to remove all of the unwelcome strangers from his home.

I hope that your LO will feel better too. I know it seems impossible but I hope that is not the case.

And has the primary care physician ever had a patient DX'd with LBD who was seen by this "top specialist" you are seeing? In my mind, that's the kind of experience you are looking for. And, in lieu of that, finding a psychiatrist who can treat the hallucinations and sees the caregiver as an important part of the team would be second best.

Re: stopping the delusions for your son. This could either be "showtime," which is a phenomenon that occurs in LBD where the patient can often put on a good act/show for MDs or others. Or it could be your son accomplishing the distraction.

Thank You Robin. I have noticed that she does seem to pick and choose who can see her in delirium. She can be totally out of it and if the doorbell rings the visitor enters and all seems normal. I wonder sometimes if others are doubting what I am telling them. When my sisters call I notice a pleasant telephone voice that seems saved for them. Is this really possible? If so, does she actaully have control over her episodes. I surely thought not.

I'm sorry that you're going through this nightmare, but your lo symptoms sound like my mothers. Her auditory hallucinations are all around the sound of water. I didn't realize that that's what they were for a long time. And yes, my mother manages to "pull her self together" for other people. Her delusions are generally just shared with me and my daughter (the other caregiver). She doesn't want other people to know that :
1. She's poor and destitute
2. There's no gas in the house and she's freezing and the pipes will burst
3. She has no health insurance
4. She hears water coming through the ceiling or showers running when they're not.

Yesterday, Halloween was a nightmare. Last year on devils night someone egged her front door..so, this year she was terried that they were going to break her windows, doors, egg the house, etc. She trembled all evening and wouldn't get up at all. It's almost like she hid in the bed. (Of course with 4 blankets, etc because she's cold.

My mother tries to carry on a normal conversation with others but its getting harder and she knows it, so she just doesn't respond. It takes her several minutes for her mind to be able to respond to questions.
I also noticed that I can't give her choices--it just confuses her.

She can't swallow very much (barium swallow test) and she complains of stomach pains when she does it. Everything is pureed at this point.
She eats barely as much as a 1 year old baby. I don't know how long she has, but I don't think she can last very long at this rate. The most difficult part for me is that her short term memory is pretty good so she knows that she can't live long the way things are.

Hi....I can totally relate.........my mom was diagnosed last December......it started with auditory hallucinations.........she heard music and then singing........all the neighbors were singing around her....only they were sending messages using song.......it was like a daily soap opera. She wouldnt tell anyone but me........so I know what you mean about everyone doubting......she got to the point where it consumed her whole days and nights........then she thought people were in the house trying to kill her.......and she went next door when no one was home and hid under their bed.......she would stay up at night and listen to these "singers" and a couple of them even came to her house.......then she would sleep late into the day..it got to the point where she would unplug everything electric in her house trying to get it to stop.........she was driving herself crazy and I would go to her house and find her hiding behind furniture because "they" were there to kill her..........her doctor put her into the hospital and ran tests.....and the diagnosis was dementia.....but since then has progresses to alzheimer with lewy body. She is on aricept(for the alzeheimer), seriquel(for the hallucinations), and now resperdol to calm her so she wont get so aggitated. It has been very unreal and a nightmare. (for both of us). We live in a small town and dont have access to anything but a nursing home....which is a nice one. The doctor put her there because she needed 24 hour care and I work and there is no one else to help take care of her. I feel horrible and guilty........but she seems to be fine until someone goes to visit......all she talks about is wanting to go home and that there is nothing wrong with her because she can still dress herself, and feed herself and eat by her self........she doesnt believe there is anything wrong........because all the hallucinations are real to her.......so she thinks we just dont want to mess with her.....I have always been very close to my mom but now she thinks I am the daughter from Hell.......and she cannot believe I would put her in a nursing home!!!!! It has been horrible..........I tried taking her home with me........but the gang of kids on bikes that were going to kill her followed her to my house ....she would grab me and try to get me out of the house because they were there....she was petrified for both our safety........my teenage daughter would cry from the stress of seeing her Grandmother act like such a stranger and being so delirious I thought she was going to have a stroke and she has high blood pressure anyway..........sometimes we have to do things we do not want to do.......I had to choose where I could keep her safe at......and not put our family in total chaos all the time........she would try and leave and go home.........and I have to sleep......she would get mad at me if I tried and reassure her that no one was here.......she tells me I am the one who is crazy.....and that I need to have my ears checked. The gang also followed her to the hospital and the nursing home.........since then the meds have helped with the hallucinations and calming her..........but she is in a controlled environment and will do what they tell her.........here she wouldn't do what I asked........she just turned 90 and would let us celebrate her birthday.........she said if we werent going to take her home just to get out and never come back.........she is very nice to everyone at the nursing home.......but we are triggers that set her off.......so I dont go very often because it upsets her and me and I have to take anxiety pills to calm down after a visit..........sometimes I wish it would just progress to the next level and she would forget about home and even who I am if it meant she would have some peace of mind.....and maybe we could have a nice visit........she will not visit with us........she just keeps asking why she is there and when she can go home......trying to change the subject does not help.........she just goes right back to when can she go home.......I have been thru alot in my life.......but nothing like this!! When I look back over the past 3 years or so I can see now that there were signs of this coming........but just blew it off to old age........untill the hallucinations started it never occurred to me that something else was wrong..........I am up for any suggestions and tips on how to get her to not be mad at me........it breaks my heart!!!!!!!!!!!! Never say you will never place your mother.......because you will end up eating your words........and the guilt is almost more than I can bear sometimes........even tho I know she is being taken care of very well.....if I could just go and visit with her and have her tell me she loves me once more it would help..........but the way things are now is pure torture. I know it is the disease and that she doesnt really hate me........but how often can you take hearing your own mother tell you to get out and not come back???? I just wish I knew how long it would be at this stage and when it might progress.........

Dear Reynolds
I am so sorry that you are going through this. I feel exactly the same way. I am an only child and I never thought I would consider putting my mom in a nursing home; however, I too am losing weight because I have a hard time eating without losing it. The stress is taking its toll on me. You're right, I almost wish she didn't have the cognitive skills that she has. My mother tells me too that I am "losing it". That I need to see a doctor. That I am sicker than she is. She too is paranoid. We have robbers that come to our house and take jewelry, money, etc. and replace it with fake money and jewelry. I never thought I would be here. Please feel free to email me directly if you would like. I am learning that there are so many different aspects of this horrible disease that not everyone experiences the same things. It is hard to understand what's going on with your loved one. Let's just keep the faith and try what we can.

Just an update.........Mom has been in the Nursing Home for a year now...and with the help of meds....and the progression of the disease.....she now will hold a conversation with me without getting aggresive or mad.......her memory is worse also.....and in our case....that helps....cause you can distract her now away from topics that will only be upsetting........you couldnt before......she was had a one track mind..."when will I go home" and you couldnt distract her at all!!! She remembers most of us.......but if she hasnt seen someone is a long time......she really doesnt recall who they are. Her physical condition has gotten a bit worse......get off balance easier.....more than likely from sitting so much sleeping in her chair and not moving around a lot. She is almost always asleep in the chair when you go there. She lost her bottom teeth one day and I looked everywhere.......she said she didnt think she ever had bottom teeth.......I found them in her chair thankfully!!(another disaster averted!!) So some of the stress is off her from worrying why she is there......and it is also easier on us, cause she isnt making us feel horrible all the time now. They take really good care of her.....it isnt home........but we just have to accept that those days are gone and we have all had to adapt to her new surroundings. She is comfortable, and safe and has help when she needs it. Once in a great while she even takes part in some of the activities, which a year ago, she absolutely refused to do. She gets her hair done once a week at the beauty shop there. It has been a long time getting to this point....but at least now we can go and visit with her and she smiles and says she loves us........and that is all I need to hear from her. I figure the future is uncertain at this point and at 90 (91 in June), we just need to be grateful we can still go and see her and hug her and show her our Love. There are more times than not now that she doesnt even mention Home...and that in itself is a blessing!!

Thanks for writing an update and letting us know that your Mother has finally settled into her new enviromant and it is less stressful on all during visits. I am glad that you found a place that you are comfortable with in her care. Thats really important!

Can anyone tell me if Bowel Incontinence can be an LBD symptom before the later stages? Mom has started to have some more frequent episodes. I have taken her to a Gastro doctor, had a colonoscopy and changed her diet. The specialist does not find any reason for this problem. She seems to have no signal that she needs to use the bathroon and sometimes does not even know she has had an accident
until she goes to the bathroom. Her hallucinations are under control for the moment, she is less confused but this is extremely upsetting to her
as she is cognizant right now. Any experience in this area would be greatly appreciated.
God Bless

MJNolan -

You might start a new topic for this.

Bowel incontinence can be a problem though constipation is more common than incontinence. Those with PD and PD-related disorders have lost the neurological and sensory signals that say "I need to go" or "I am going." With some people, part of the problem is that they are physically unable to get to the toilet in time, but that doesn't sound like your mom's problem.

Good luck,
Robin