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 What do you say? 
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Joined: Tue Jun 26, 2007 11:15 am
Posts: 3
Location: milwaukee, WI
Post What do you say?
My grandfather was recently diagnosed with Lewy Body and though we have been seeing symptoms for a few months he had been previously misdiagnosed. The worst part for us is that up until a few months ago he was very sharp minded and very independent. Now he has so many delusions, including thinking that there was an odd smell in the house because there were people coming in and leaving backpacks full of dead body parts. These are the same people who have a child that has no legs copper tubing coming out of her ears and boards holding her head up and to top it off she is sleeping in a chair in my grandfathers living room. AAAAAAHHHHHHHHH, what do you say to this kind of stuff. Most of the time we do not correct him we just try to let him know that we will get rid of the smell and make the people staying in his home get out. This doesnt usually have much affect but really what do you say to this. I worked in a residential care home for the mentally ill for 6 years and never had a problem dealing with delusional people but it is so different when it is a family member. Any suggestions would be so appreciated.

Tue Jun 26, 2007 11:52 am

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA

As a note here, sometimes, the delusions seem to be caused by dreams getting confused with reality. One of the leading voices in LBD research and care uses a different approach to treating them, compared to the usual antipsychotics.

Search here for posts with modafinil, provigil, stimulant, psychostimulant or amphetamine, or read his paper, at: ... nuum04.pdf

It's really a useful strategy for us, because the crazy delusions had our LO on a fast track to a locked psych ward. They stopped cold after two days with this therapy.


Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at

Tue Jun 26, 2007 2:25 pm
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
Hi Kimbles
May I just say that I'm sorry for you and your families troubles and that you've come to the right place. We as a family have found the information here so helpful, I can't tell you...

Our Mum suffers terribly from the delusions and hallucinations, often in the past she has fallen and hurt herself whilst trying to escape the demons that invade her home.

We are currently awaiting a dr appointment in July where hopefully we can show him Eric's advice on psycostimulants and trusting he's as forward thinking as Cal's dr, maybe we'll get results!

On the note of "what do you say?" we have found that the most effective way to ease Mum's mind is to tell her that we believe what she tells us and that we'll do everything we can to protect her but that we can't see what she sees. Her delusions mostly stem around the family withdrawing their support and as long as we reassure her that this will NEVER happen, she slowly comes to terms with the fact that we'll always be there for her.

Mum also lives at home alone where she receives home help three times a day and one of her children sit with her during the evening to assist her in getting to bed. We are a large family and all take our turn over the weekends, using a rota system. At times when Mum's alone in the house she wears a falls belt and a pendant connected to a call centre. This eases our minds whilst we're at work.

It's just one day at a time mostly, but once you get the hallucinations and delusions a little more under control things seem to settle.

Good luck and God Bless
Kind regards

Wed Jun 27, 2007 4:43 am

Joined: Fri Jun 01, 2007 9:33 pm
Posts: 18
Location: Walker,La.
It is a very fine line we walk with Mom on this subject.To quote my Dad"She has always been right and what she says is gospel." The problem here is Dad never or rarely corrected her.He finds it so hard to go against her and she feels like he's betraying her now when he tells her she's wrong.
We made the mistake,early on of letting Mom see the shock in our eyes when she relayed her tales to us.This resulted in her just not telling us anything for awhile.We have learned...even my 10 year old just listen and assure her that we're here for her at all times and will help her through any and all issues.

Wed Jun 27, 2007 4:02 pm

Joined: Mon Jun 18, 2007 7:53 am
Posts: 16
Location: Michigan
Post reply on how to handle delusions.
My husband has these all the time. Delusions of sight, sound, taste, touch, smell.The other day he swore that there were two men in the bedroom that had tool belts on. Sometimes he will run outside to hide a rake, snow shovel, etc. for fear someone might steal them. The hardest part is to reassure them that this is not happening and that everything is okay.

My biggest problem right now is what to do when my husband leaves the house to look for me when I'm right there next to him. He did that last night. The poor dog kept on getting confused because my husband told him to go look for "Mother" and "Mother" was standing right there.
Also, my husband will wake up from a nightmare and blame me-once he accused me of being a monkey and I was sitting on his chest and hitting him.
I went to a local support group for Alzheimers but found it was of little help because the other caregivers don't have the expereinces of nightmares, delusions, etc..
Has anybody gotten any relief for their LBD patient regarding the vision problems. My husband WAS an avid reader-but now nothing. He claims that he just needs a different pair of glasses. But we had a 6 hour exam with a neruo-opthmalogist at the Michigan State University and he said nothing can be done. My husband refuses to get a magnifier-reader for the table. :(

Thu Jun 28, 2007 8:29 pm

Joined: Tue Apr 24, 2007 1:09 pm
Posts: 43
Location: Alberta, Canada
Post Re: reply on how to handle delusions.
"Has anybody gotten any relief for their LBD patient regarding the vision problems. My husband WAS an avid reader-but now nothing. He claims that he just needs a different pair of glasses. But we had a 6 hour exam with a neruo-opthmalogist at the Michigan State University and he said nothing can be done. My husband refuses to get a magnifier-reader for the table. "

Hi Marji,

Mom's not experiencing vivid delusions or hallucinations yet. BUT, her difficulty reading has been a major issue, as she was also an avid reader. We've been to the opthamalogist, had cataracts removed, been to the optometrist countless we're scheduled to see a neuro-opthamalogist next month. Really, it seems that no one knows what to do, or whether there is anything that can be done. It's so frustrating, as mom used to fill her days reading and/or watching she seldom does either. She finds that the large print books are easier for her....but our local library has a somewhat limited selection.

Sorry I don't have any answers for you, but I can relate at least....


Sat Jun 30, 2007 1:02 pm
Hi all !
With our issues with the eye problems my husband was prescribed prizms for his glasses and they helped a great deal, something you could pass along to your eye doctor, I hope this helps! :)

Sat Jun 30, 2007 9:32 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Jerome has had macular degeneration, cataracts, and other vision problems (probably related to the LBD), and is now legally blind. Last week for the first time, we went for a low vision consultation at the Braille Institute locally and it was amazing. First, all Braille services, including all consults, are free, and they have an enormous range of vision aids that I'd never seen or heard of. Also, they were able to tell us that Jerome can qualify for VA benefits for vision and for general health even though all our research had pointed to the contrary. The low vision specialist with whom we met was not familiar with LBD, but was very willing to take the materials and resources I shared with her, particularly the article on how vision is affected by LBD. Go to for the list of all their regional centers. The vast majority of their clients, by the way, are in their 70s, so they are very comfortable working with the elderly, including those with cognitive impairments.

Renata (and Jerome-in-Heaven)

Mon Jul 02, 2007 8:58 pm

Joined: Thu Jun 28, 2007 12:32 pm
Posts: 9
Location: Knoxville, TN

I can really understand where some of you are coming from...Unfortunately, I am very new to this disease and have a lot of questions myself. My mom has recently been diagnosed with LBD. She also has delusions of reality. Confused speech and thought patterns. Hearing things or persons that aren't there. Hallucinations of "bugs" that are attacking her, although they don't always. She is quite young (60) to be going through this. But she has neglected herself and her health which plays a big part in this LBD grabbing ahold of her like it has, I think. I don't know how to respond to her delusions. She mishears EVERYTHING, which is very nerve racking. Thinking everything is a conspiracy. I only help take care of her about 2 weeks out of a month. My dad is fixing to retire because the cost of caregiving is so high. I am concerned about my dad assuming care 24/7. He thinks he can handle it, but I am fearful of his health and how this might affect him. In this corner of world, there are not a lot people wanting to be caregivers. I am so sorry I don't have any supportive advice, and I hate asking for help. Can anyone give me any advice? Thanks so much for listening. :?

If anyone needs someone to talk to, please don't hesitate.

Tue Jul 03, 2007 8:53 pm
conarc wrote:
Can anyone give me any advice? -Christy

Hi Christy,
Welcome to the LBD forums, I am glad you found us and I know there are many here that can be helpful and one day you will too.
As to your Mom's delusions, yes they are hard but we as caregivers must look at them another way, First off what they are hearing or seeing is very real to them and I would say first try diversion, try and get them to think of other things sometimes it works other times it doesn't, if everyone around her could just remind themselves she really can't control any of it, another thing is validation, it is good to tell them that you know what they see is real to them but you can't see it.
As to your Dad being caregiver well many people are doing it because they don't have a choice, I would tap into as many resources as you can find to get help for your Dad, contact your local Alzheimers and they may be able to help your family. Make sure your Dad gets some respite away from the everyday things because caregiver burn out is very real. Many times there are churches that can offer some help with respite also. If you are in need of some resourse web sites let me know.
Good Luck! :)

Tue Jul 03, 2007 10:27 pm

Joined: Thu Jun 28, 2007 12:32 pm
Posts: 9
Location: Knoxville, TN

Thanks for responding. I will try your suggestions...But usually, mom has a one track mind. But I will try. At this point I am about willing to try anything! :roll: I keep trying to tell myself that this is not the mom I used to know and love. I also try to keep from getting mad at her, but it is so easy to get frustrated. I hear all these peoples stories and I think of my own and I just want to reach out to them. It's really nice to know that I am not alone in this. Thanks.

Thanks for listening!
If you need a friend, please don't hesitate to write.

Thu Jul 05, 2007 10:29 pm
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