Re: Hallucinations...Please Define

[Guest guest]

Hi!

Hallucinations can be things that the LO sees that aren't really there (for

example, my dad

often sees bears, other animals, or " little people " in the room). There are

also auditory

hallucinations, where the person hears things that aren't there. I don't think

my dad has

had any of those.

The made-up stories are more of a delusion....believing something that is not

true. For

example, my dad believes that my mom has disappeared (even though she's right

next to

him) and been replaced by a series of workers who all happen to have the same

name as

her. He also has trouble getting back to reality after having dreams or

nightmares. He

dreamed once that my mom was a spy. When he woke up that morning, he wouldn't

talk to

her until about lunchtime, when she finally weaned out of him what he was upset

about.

Yes, hallucinations/delusions are key in diagnosing LBD. If you go to Google and

type in

" Parkinson's, dementia " you'll get a bunch of web sites about Lewy Body that

describe the

primary symptoms needed for diagnosis.

Best of luck with your MIL. It does take awhile for the folks to come out of

denial. I printed

out as much information as I could from the Internet, including a lot of

personal stories

from people who's LO's sounded just like my dad. After reading that stuff, my

mom

realized that our diagnosis was correct, and also that it would not be an easy

road.

God bless!

>

> I am still trying, no STRUGGLING, to piece all of the LBD symptoms

> together. I've read a lot here about hallucinations. Are you

> referring to things that your LO thinks he or she sees with their

> eyes or are your referring to made-up stories? I'm not sure my FIL

> has had visual hallucinations, but he has come up with some odd

> stories. I remember one time where he'd had a dream and, the next

> morning, he talked about it as if it had truly happened. It took us

> all awhile to figure out that he'd had a dream, but my FIL didn't

> seem to realize it. It didn't make any sense and it involved people

> he hadn't been in contact with for many, many years. He actually

> thought what he'd dreamed about was reality. Must one have

> hallucinations in order to be diagnosed with LBD? Can anyone tell

> me with certainty how LBD is determined? I know that PD can also

> cause tremors, stooped posture, slowness of gait and mental

> confusion. How can you tell the difference between the two? Sorry,

> but I just want to get a clearer understanding of the disease.

>

> By the way, thank you all so much for replying to my numerous

> posts. What you've shared with me has made me realize all the more

> that I need to keep asking questions. I don't need to give up until

> I find the answers I'm looking for. I just hope that my MIL will be

> receptive to the information I've gathered. As I've eluded to

> before, I think she is in denial about my FIL's PD w/LBD diagnosis.

> I'm not sure she understands what she's up against.

>

> Thanks, again!

> April W.

> GA.

>

[Guest guest]

April W,

There are auditory and visual hallucinations. With both of those you

actually hear or see things. Made-up stories are usually a sign of

delusion. Of course hallucinations, delusions and paranoia are all

symptoms of LBD.

I believe that there have been people diagnosed with LBD that didn't

have hallucinations.

My Mother has seen people, babies, ducks, and threads floating in the

air. Some people have terrifying hallucinations. Seroquel helps with

hallucinations, delusions, and paranoia.

Since the doctors are still arguing about the difference between LBD

and PDD, there isn't a very good answer.

in Dallas

>

> I am still trying, no STRUGGLING, to piece all of the LBD symptoms

> together. I've read a lot here about hallucinations. Are you

> referring to things that your LO thinks he or she sees with their

> eyes or are your referring to made-up stories?

<snip>

> Must one have

> hallucinations in order to be diagnosed with LBD? Can anyone tell

> me with certainty how LBD is determined? I know that PD can also

> cause tremors, stooped posture, slowness of gait and mental

> confusion. How can you tell the difference between the two? Sorry,

> but I just want to get a clearer understanding of the disease.

>

[Guest guest]

April,

My Dad never had classic hallucinations. However, he had vivid, details

delusions where he was the central character. I have detailed some of these

delusions on my blog: http://lifewithdad.blogspot.com/

The last entry was only four days before his passing on 12/02.

Margee

>

>

> Date: 2006/01/11 Wed AM 09:31:58 EST

> To: LBDcaregivers

> Subject: Hallucinations...Please Define

>

>

[Guest guest]

April, I'm confused too about the difference between Parkinson's and Lewy Body.

My mom has the Parkinson's symptoms and has been diagnosed with LBD

approximately three years ago. She had auditory hallucinations in the very

beginning but it was after surgery while she was still in the hospital and then

when she first got back to the nursing home. For instance, while in the

hospital she thought there was a man in the next room tearing the place apart.

My sister went and looked. There was no man and there had been no disturbance.

Mom wouldn't believe it. When she got back to her room in the nursing home she

believed that the very elderly, sick lady in the next room was being attacked by

a street person (a man) who came in through her window and they had kinky

sex!!!! Of course we knew this wasn't true but again, Mom was certain about it.

Well, these things happened after surgery so I think the medications were

responsible. Since she has recovered from surgery she doesn't

hallucinate any more. So it does make you wonder.

Mom is in very bad shape physically: Tracheotomy, feeding tube, respirator,

can't walk or sit up on her own, bed sore on her butt . . . . the list goes

on. The poor woman is totally helpless. Also has a catheter and wears a diaper

or rather lays on a pad trying to fight the damn bed sore! She can't talk

without this little plastic valve that we put on the end of the trach. The

strange part about all this to me is that her mind is really pretty good. She

has good and bad days as far as her memory. Generally, her short-term memory is

bad, but if you talk to her about her finances or the medications she's on or

even the disease, she knows all about all of that stuff. She knows she's been

diagnosed with LBD with Parkinson's symptoms. She's also in a lot of pain

because she's stiff.

The part about the denial is so true. Her brother wouldn't believe it at

first and was convinced it was something in the environment, like maybe black

mold in her basement. He even took a sample and sent it out to a lab! Nothing

there. It took him a long time to realize she wouldn't be getting better and

that there is no cure. Also, my sister's husband and my husband keep saying

she's getting better and she's fine. Yeah, right! That's why she lays in a

nursing home. It's frustrating dealing with people who are in denial.

This group has been wonderful. I don't write that often, but I do read a lot

of the postings. Sometimes, though, I don't see a lot that I can relate to

because everyone else seems to be talking about the hallucinations and delusions

so much and dealing with that and having the LO at home, etc. My sister and I

would love to be able to take care of mom, but that's just not possible. She

needs round-the-clock nursing. It's so horrible. We can't even bring her home

for a visit because she's all hooked up to all these tubes and then there's the

oxygen tank and the changing of diapers. It's a nightmare! Mom is 72 and was

healthy all her life! We are devastated. She's the last person we ever

thought would be this sick.

Somebody please write back with similar experience! April, hang in there.

D. in CT.

valrex36 wrote:

Hi!

Hallucinations can be things that the LO sees that aren't really there (for

example, my dad

often sees bears, other animals, or " little people " in the room). There are

also auditory

hallucinations, where the person hears things that aren't there. I don't think

my dad has

had any of those.

The made-up stories are more of a delusion....believing something that is not

true. For

example, my dad believes that my mom has disappeared (even though she's right

next to

him) and been replaced by a series of workers who all happen to have the same

name as

her. He also has trouble getting back to reality after having dreams or

nightmares. He

dreamed once that my mom was a spy. When he woke up that morning, he wouldn't

talk to

her until about lunchtime, when she finally weaned out of him what he was upset

about.

Yes, hallucinations/delusions are key in diagnosing LBD. If you go to Google and

type in

" Parkinson's, dementia " you'll get a bunch of web sites about Lewy Body that

describe the

primary symptoms needed for diagnosis.

Best of luck with your MIL. It does take awhile for the folks to come out of

denial. I printed

out as much information as I could from the Internet, including a lot of

personal stories

from people who's LO's sounded just like my dad. After reading that stuff, my

mom

realized that our diagnosis was correct, and also that it would not be an easy

road.

God bless!

>

> I am still trying, no STRUGGLING, to piece all of the LBD symptoms

> together. I've read a lot here about hallucinations. Are you

> referring to things that your LO thinks he or she sees with their

> eyes or are your referring to made-up stories? I'm not sure my FIL

> has had visual hallucinations, but he has come up with some odd

> stories. I remember one time where he'd had a dream and, the next

> morning, he talked about it as if it had truly happened. It took us

> all awhile to figure out that he'd had a dream, but my FIL didn't

> seem to realize it. It didn't make any sense and it involved people

> he hadn't been in contact with for many, many years. He actually

> thought what he'd dreamed about was reality. Must one have

> hallucinations in order to be diagnosed with LBD? Can anyone tell

> me with certainty how LBD is determined? I know that PD can also

> cause tremors, stooped posture, slowness of gait and mental

> confusion. How can you tell the difference between the two? Sorry,

> but I just want to get a clearer understanding of the disease.

>

> By the way, thank you all so much for replying to my numerous

> posts. What you've shared with me has made me realize all the more

> that I need to keep asking questions. I don't need to give up until

> I find the answers I'm looking for. I just hope that my MIL will be

> receptive to the information I've gathered. As I've eluded to

> before, I think she is in denial about my FIL's PD w/LBD diagnosis.

> I'm not sure she understands what she's up against.

>

> Thanks, again!

> April W.

> GA.

>

Welcome to LBDcaregivers.

[Guest guest]

April, I'm confused too about the difference between Parkinson's and Lewy Body.

My mom has the Parkinson's symptoms and has been diagnosed with LBD

approximately three years ago. She had auditory hallucinations in the very

beginning but it was after surgery while she was still in the hospital and then

when she first got back to the nursing home. For instance, while in the

hospital she thought there was a man in the next room tearing the place apart.

My sister went and looked. There was no man and there had been no disturbance.

Mom wouldn't believe it. When she got back to her room in the nursing home she

believed that the very elderly, sick lady in the next room was being attacked by

a street person (a man) who came in through her window and they had kinky

sex!!!! Of course we knew this wasn't true but again, Mom was certain about it.

Well, these things happened after surgery so I think the medications were

responsible. Since she has recovered from surgery she doesn't

hallucinate any more. So it does make you wonder.

Mom is in very bad shape physically: Tracheotomy, feeding tube, respirator,

can't walk or sit up on her own, bed sore on her butt . . . . the list goes

on. The poor woman is totally helpless. Also has a catheter and wears a diaper

or rather lays on a pad trying to fight the damn bed sore! She can't talk

without this little plastic valve that we put on the end of the trach. The

strange part about all this to me is that her mind is really pretty good. She

has good and bad days as far as her memory. Generally, her short-term memory is

bad, but if you talk to her about her finances or the medications she's on or

even the disease, she knows all about all of that stuff. She knows she's been

diagnosed with LBD with Parkinson's symptoms. She's also in a lot of pain

because she's stiff.

The part about the denial is so true. Her brother wouldn't believe it at

first and was convinced it was something in the environment, like maybe black

mold in her basement. He even took a sample and sent it out to a lab! Nothing

there. It took him a long time to realize she wouldn't be getting better and

that there is no cure. Also, my sister's husband and my husband keep saying

she's getting better and she's fine. Yeah, right! That's why she lays in a

nursing home. It's frustrating dealing with people who are in denial.

This group has been wonderful. I don't write that often, but I do read a lot

of the postings. Sometimes, though, I don't see a lot that I can relate to

because everyone else seems to be talking about the hallucinations and delusions

so much and dealing with that and having the LO at home, etc. My sister and I

would love to be able to take care of mom, but that's just not possible. She

needs round-the-clock nursing. It's so horrible. We can't even bring her home

for a visit because she's all hooked up to all these tubes and then there's the

oxygen tank and the changing of diapers. It's a nightmare! Mom is 72 and was

healthy all her life! We are devastated. She's the last person we ever

thought would be this sick.

Somebody please write back with similar experience! April, hang in there.

D. in CT.

valrex36 wrote:

Hi!

Hallucinations can be things that the LO sees that aren't really there (for

example, my dad

often sees bears, other animals, or " little people " in the room). There are

also auditory

hallucinations, where the person hears things that aren't there. I don't think

my dad has

had any of those.

The made-up stories are more of a delusion....believing something that is not

true. For

example, my dad believes that my mom has disappeared (even though she's right

next to

him) and been replaced by a series of workers who all happen to have the same

name as

her. He also has trouble getting back to reality after having dreams or

nightmares. He

dreamed once that my mom was a spy. When he woke up that morning, he wouldn't

talk to

her until about lunchtime, when she finally weaned out of him what he was upset

about.

Yes, hallucinations/delusions are key in diagnosing LBD. If you go to Google and

type in

" Parkinson's, dementia " you'll get a bunch of web sites about Lewy Body that

describe the

primary symptoms needed for diagnosis.

Best of luck with your MIL. It does take awhile for the folks to come out of

denial. I printed

out as much information as I could from the Internet, including a lot of

personal stories

from people who's LO's sounded just like my dad. After reading that stuff, my

mom

realized that our diagnosis was correct, and also that it would not be an easy

road.

God bless!

>

> I am still trying, no STRUGGLING, to piece all of the LBD symptoms

> together. I've read a lot here about hallucinations. Are you

> referring to things that your LO thinks he or she sees with their

> eyes or are your referring to made-up stories? I'm not sure my FIL

> has had visual hallucinations, but he has come up with some odd

> stories. I remember one time where he'd had a dream and, the next

> morning, he talked about it as if it had truly happened. It took us

> all awhile to figure out that he'd had a dream, but my FIL didn't

> seem to realize it. It didn't make any sense and it involved people

> he hadn't been in contact with for many, many years. He actually

> thought what he'd dreamed about was reality. Must one have

> hallucinations in order to be diagnosed with LBD? Can anyone tell

> me with certainty how LBD is determined? I know that PD can also

> cause tremors, stooped posture, slowness of gait and mental

> confusion. How can you tell the difference between the two? Sorry,

> but I just want to get a clearer understanding of the disease.

>

> By the way, thank you all so much for replying to my numerous

> posts. What you've shared with me has made me realize all the more

> that I need to keep asking questions. I don't need to give up until

> I find the answers I'm looking for. I just hope that my MIL will be

> receptive to the information I've gathered. As I've eluded to

> before, I think she is in denial about my FIL's PD w/LBD diagnosis.

> I'm not sure she understands what she's up against.

>

> Thanks, again!

> April W.

> GA.

>

Welcome to LBDcaregivers.

[Guest guest]

Hi , the only comment I have to make is that when there are

delusions and they involve members of the family who don't live at the residence

or

are seldom seen and/or they see loved ones when they were younger, I would

say that there is no sense in denying that they are seeing something that is not

there. This is what goes on here. Arlene

[Guest guest]

Margee, I just read some of your blog and am confused. Did your dad have

Alz orLBD?

There is such a difference that I think it is important to know his final

diagnosis. Did he have an autopsy to confirm what he had? Thanks for the

info. Arlene

[Guest guest]

I've stopped being so certain the things they see aren't there in

some dimension.

They all see children or little people. They see animals. What if my

mother really is seeing dead relatives? Just because I can't see

them doesn't mean they aren't there. They are so real to her and to

the LO of so many people who have contributed here.

So now I just say, she sees things I can't see.

> >

> > I am still trying, no STRUGGLING, to piece all of the LBD

symptoms

> > together. I've read a lot here about hallucinations. Are you

> > referring to things that your LO thinks he or she sees with

their

> > eyes or are your referring to made-up stories? I'm not sure my

FIL

> > has had visual hallucinations, but he has come up with some odd

> > stories. I remember one time where he'd had a dream and, the

next

> > morning, he talked about it as if it had truly happened. It

took us

> > all awhile to figure out that he'd had a dream, but my FIL

didn't

> > seem to realize it. It didn't make any sense and it involved

people

> > he hadn't been in contact with for many, many years. He

actually

> > thought what he'd dreamed about was reality. Must one have

> > hallucinations in order to be diagnosed with LBD? Can anyone

tell

> > me with certainty how LBD is determined? I know that PD can

also

> > cause tremors, stooped posture, slowness of gait and mental

> > confusion. How can you tell the difference between the two?

Sorry,

> > but I just want to get a clearer understanding of the disease.

> >

> > By the way, thank you all so much for replying to my numerous

> > posts. What you've shared with me has made me realize all the

more

> > that I need to keep asking questions. I don't need to give up

until

> > I find the answers I'm looking for. I just hope that my MIL

will be

> > receptive to the information I've gathered. As I've eluded to

> > before, I think she is in denial about my FIL's PD w/LBD

diagnosis.

> > I'm not sure she understands what she's up against.

> >

> > Thanks, again!

> > April W.

> > GA.

> >

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>

[Guest guest]

Wow. What a concept!

Makes me wonder, too!

You wrote:

So now I just say, she sees things I can't see.

[Guest guest]

Just a thought to interject. My Uncle sees people that have passed along

with " strangers " and animals. He said he saw his mother, who would be about 112

now, she was young and with his father, and he said she said she is " waiting

for him " and will come and get him when he was ready. I also question if

what/who they see is in fact another dimension? Ha, wouldn't that be a new TV

show! Peace, Stevie

* * * * * * * *

I've stopped being so certain the things they see aren't there in

some dimension.

They all see children or little people. They see animals. What if my

mother really is seeing dead relatives? Just because I can't see

them doesn't mean they aren't there. They are so real to her and to

the LO of so many people who have contributed here.

So now I just say, she sees things I can't see.

[Guest guest]

Yes, my father sees his Mother, Aunt, all people who have past. He was

needing to take his mother to the store the other day! He talks about his dog

(he has none). And even puts scraps down for him. There are always little

people on the sink and stove top. Do other lbd patients have a bunch of men

working on stuff also? We always seen to have men working on the sink, washer,

outside...ect...They never seem to get much done! I ask him how he gets so many

workers without paying them? The good thing is, he still has a sense of humor,

and laughs about it. I've wondered myself, maybe they are there and it's

me......

Barb

juperant@... wrote:

Just a thought to interject. My Uncle sees people that have passed along

with " strangers " and animals. He said he saw his mother, who would be about 112

now, she was young and with his father, and he said she said she is " waiting

for him " and will come and get him when he was ready. I also question if

what/who they see is in fact another dimension? Ha, wouldn't that be a new TV

show! Peace, Stevie

* * * * * * * *

I've stopped being so certain the things they see aren't there in

some dimension.

They all see children or little people. They see animals. What if my

mother really is seeing dead relatives? Just because I can't see

them doesn't mean they aren't there. They are so real to her and to

the LO of so many people who have contributed here.

So now I just say, she sees things I can't see.

[Guest guest]

For a long time, I would insist that anything I couldn't see was not

real but my mother started to ask why I needed to always be right when

me being right meant she was wrong. It was a fair question.

I still say, " I don't see what you see. "

But now we aren't fighting and she doesn't have to hide anything from

me. And maybe what she sees is real in some way. Could be memories

being triggered. Who knows?

>

>

>

> Hi , the only comment I have to make is that when there

are

> delusions and they involve members of the family who don't live at

the residence or

> are seldom seen and/or they see loved ones when they were younger, I

would

> say that there is no sense in denying that they are seeing something

that is not

> there. This is what goes on here. Arlene

>

>

>

[Guest guest]

-

Hi ,

I would agree with Arlene re hallucinations. My sister talks to

people that aren't there, but to her, they are very real. What I do

is go along with her and if these " people " are bothering her, I tell

her I have told them to go away. If you argue with LBD patients

about seeing people, I find it only makes them more agitated. Take

care.

Anne, Ont. Canada

-- In LBDcaregivers , " steviegail "

<stephanie_brent@h...> wrote:

>

> For a long time, I would insist that anything I couldn't see was

not

> real but my mother started to ask why I needed to always be right

when

> me being right meant she was wrong. It was a fair question.

>

> I still say, " I don't see what you see. "

> But now we aren't fighting and she doesn't have to hide anything

from

> me. And maybe what she sees is real in some way. Could be memories

> being triggered. Who knows?

>

>

>

> >

> >

> >

> > Hi , the only comment I have to make is that when there

> are

> > delusions and they involve members of the family who don't live

at

> the residence or

> > are seldom seen and/or they see loved ones when they were

younger, I

> would

> > say that there is no sense in denying that they are seeing

something

> that is not

> > there. This is what goes on here. Arlene

> >

> >

> >