Re: theft/personality changes lynn

[Guest guest]

Sharon,

I, for one, am very glad that you post about the episodes that you have. Many

people with LBD don't know what it is when they are in the early stages, and

certainly not until they actually get scared enough to tell someone or go to be

evaluated.

Please continue to post what you feel, as well as whatever you can add from the

caregiver perspective also.

Hugs and prayers,

Joan

>

>

>

> Subject: Re: theft/personality changes

> To: LBDcaregivers

> Date: Monday, July 5, 2010, 6:35 AM

>

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>  

>

>

>

> Thanks to those who responded to my questions. With each question answered by

those with experience, it may be possible to build a profile of sorts for LBD,

especially considering individual variations. A few extractions from responses

before continuing, below:

>

> < And, yes, some moments, or days, that he was " out of it " He may have had a

bad experience, or was just plain afrid of loosing his sanity. He did express

that to me several times. That was one thing that did scare him. (Imogene) >

>

> < you are at your best freinds house, you have known her for over 8 years so

that is a pretty good lentth of time, she has been very active in your life,

you used to bowl together every frdiday nite for 4 years, you go to her house

every major holiday as your part of her family, her kids and grandkids call

you auntie. etc. you are there adn having a good time, then all of a sudden

you dont recongize anyone, you are not sure where you are. you look at your man

of

> 10 years and know you know him but not sure how/why. you begin to cry, you

know you are where you are supoosed to be, but where are you. nothing seems

familiar,, nothing seems certain, (Sharon)>

>

> < He panics if the doors or windows are left unlocked.I tell him

> the dogs won't let anyone in without letting us know,but he's scared.I thought

I was making him feel insecure somehow.I hate fear.That seems such a cruel thing

added on top of everything else.He thinks people are stealing.He hides and moves

things til I want to scream,but if it makes him feel safer I cope.He thinks

people are going to come do a home invasion.He's afraid of so much so often.Are

> there any ways to soften the fear? (Joann) >

>

> < Mom would say she was confused as to why she did or said a particular thing

because she would remember what she said and know that it was wrong. In her last

year or so she would say so many times that she wished she were dead. Sometimes

I would ask her why, and she would just say 'I don't want to be a burden on

you.' She was never a burden on me, but she had to know that something was

really wrong for her to have said that time and time again. I think that she was

afraid to talk to me about what was going on, and maybe

> thought she was going crazy. Sometimes when I think of this disease, I think

that it must be like your mind being held hostage until the episode of confusion

clears away, and then you remember what happened and feel like you have no

control over it. (Joan) >

>

> These responses confirm that the fluctuations in LBD do create a situation in

which our loved ones are very aware of what is happening to them, just not able

to understand it. Sharon's description is particularly helpful because it allows

us to see things from her viewpoint as a person dealing with the

disease...confirming what we suspect. Understsanding what our loved ones feel,

but may not be able to articulate, goes a long way to helping them cope with the

challenges.

>

> Joann, my answer to your question about softening the fear may not be helpful,

depending on how much can be understood by him. When my mother first began

experiencing the hallucinations, we sat and talked about them. I suggested that

it was a movie was playing in her mind and gave her permission to ignore what

she was seeing and/or hearing. I suggested that she reach out to touch the

people and if she could not feel their skin or clothing, that she could ignore

them. If they did not wear the required nametag of an employee in her facility,

she could ignore them. After that when we would discuss what she was then

hearing and/or seeing, I would ask her if it was the movie playing in her head.

After a brief few seconds of thought, Mom would always tell me it was the movie.

Seroquel was a huge boost in that it eliminated the frightening hallucinations,

leaving pleasant ones in their place. (Mom stayed on the Seroquel until her

neurologist felt the disease

> had progressed to the point where it was no longer needed. After slow

withdrawal, no negative effects were noted. That was about 2008 if my memory is

correct.) Since then, Mom talks to others unseen by those around her but the

talks are not upsetting. Often, she is speaking with her family members who are

deceased or my father (also deceased). One day in particular in recent months,

Mom was going through the motions of walking (she has not walked since late in

2007). When she stopped the movements, I asked her where she had gone. " For a

walk. " I asked who was with her. " Oh, you wouldn't know them. " In spite of her

advanced stage, her cognitive levels can be astounding at times.

>

> The medical community would be wise to solicit specific bits of information

from caregivers. We see our loved ones over an extended period of time with

changes occurring constantly. They see them for minutes of time periodically.

Our knowledge base is far more comprehensive and could help with earlier

diagnosis or merely with coping strategies. Just my opinion...

>

> Thanks, again, to those who responded.

>

> Best wishes,

> Lynn in Florida

>

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[Guest guest]

joan, lynn and ohters

i weill do my best to post whe i can and whhenever i tfeel like i can be helpful

to others.  hugs. sharon

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

Subject: Re: theft/personality changes lynn

To: LBDcaregivers

Date: Monday, July 5, 2010, 5:30 PM

 

Sharon,

I, for one, am very glad that you post about the episodes that you have. Many

people with LBD don't know what it is when they are in the early stages, and

certainly not until they actually get scared enough to tell someone or go to be

evaluated.

Please continue to post what you feel, as well as whatever you can add from the

caregiver perspective also.

Hugs and prayers,

Joan

>

>

>

> Subject: Re: theft/personality changes

> To: LBDcaregivers

> Date: Monday, July 5, 2010, 6:35 AM

>

>

>  

>

>

>

> Thanks to those who responded to my questions. With each question answered by

those with experience, it may be possible to build a profile of sorts for LBD,

especially considering individual variations. A few extractions from responses

before continuing, below:

>

> < And, yes, some moments, or days, that he was " out of it " He may have had a

bad experience, or was just plain afrid of loosing his sanity. He did express

that to me several times. That was one thing that did scare him. (Imogene) >

>

> < you are at your best freinds house, you have known her for over 8 years so

that is a pretty good lentth of time, she has been very active in your

life, you used to bowl together every frdiday nite for 4 years, you go to her

house every major holiday as your part of her family, her kids and

grandkids call you auntie. etc. you are there adn having a good time,

then all of a sudden you dont recongize anyone, you are not sure where you are.

you look at your man of

> 10 years and know you know him but not sure how/why. you begin to cry,

you know you are where you are supoosed to be, but where are you. nothing seems

familiar,, nothing seems certain, (Sharon)>

>

> < He panics if the doors or windows are left unlocked.I tell him

> the dogs won't let anyone in without letting us know,but he's scared.I thought

I was making him feel insecure somehow.I hate fear.That seems such a cruel thing

added on top of everything else.He thinks people are stealing.He hides and moves

things til I want to scream,but if it makes him feel safer I cope.He thinks

people are going to come do a home invasion.He's afraid of so much so often.Are

> there any ways to soften the fear? (Joann) >

>

> < Mom would say she was confused as to why she did or said a particular thing

because she would remember what she said and know that it was wrong. In her last

year or so she would say so many times that she wished she were dead. Sometimes

I would ask her why, and she would just say 'I don't want to be a burden on

you.' She was never a burden on me, but she had to know that something was

really wrong for her to have said that time and time again. I think that she was

afraid to talk to me about what was going on, and maybe

> thought she was going crazy. Sometimes when I think of this disease, I think

that it must be like your mind being held hostage until the episode of confusion

clears away, and then you remember what happened and feel like you have no

control over it. (Joan) >

>

> These responses confirm that the fluctuations in LBD do create a situation in

which our loved ones are very aware of what is happening to them, just not able

to understand it. Sharon's description is particularly helpful because it allows

us to see things from her viewpoint as a person dealing with the

disease...confirming what we suspect. Understsanding what our loved ones feel,

but may not be able to articulate, goes a long way to helping them cope with the

challenges.

>

> Joann, my answer to your question about softening the fear may not be helpful,

depending on how much can be understood by him. When my mother first began

experiencing the hallucinations, we sat and talked about them. I suggested that

it was a movie was playing in her mind and gave her permission to ignore what

she was seeing and/or hearing. I suggested that she reach out to touch the

people and if she could not feel their skin or clothing, that she could ignore

them. If they did not wear the required nametag of an employee in her facility,

she could ignore them. After that when we would discuss what she was then

hearing and/or seeing, I would ask her if it was the movie playing in her head.

After a brief few seconds of thought, Mom would always tell me it was the movie.

Seroquel was a huge boost in that it eliminated the frightening hallucinations,

leaving pleasant ones in their place. (Mom stayed on the Seroquel until her

neurologist felt the disease

> had progressed to the point where it was no longer needed. After slow

withdrawal, no negative effects were noted. That was about 2008 if my memory is

correct.) Since then, Mom talks to others unseen by those around her but the

talks are not upsetting. Often, she is speaking with her family members who are

deceased or my father (also deceased). One day in particular in recent months,

Mom was going through the motions of walking (she has not walked since late in

2007). When she stopped the movements, I asked her where she had gone. " For a

walk. " I asked who was with her. " Oh, you wouldn't know them. " In spite of her

advanced stage, her cognitive levels can be astounding at times.

>

> The medical community would be wise to solicit specific bits of information

from caregivers. We see our loved ones over an extended period of time with

changes occurring constantly. They see them for minutes of time periodically.

Our knowledge base is far more comprehensive and could help with earlier

diagnosis or merely with coping strategies. Just my opinion...

>

> Thanks, again, to those who responded.

>

> Best wishes,

> Lynn in Florida

>

>

>

>

>

>

>

>

>

>

>

>