Re: Re: theft/personality changes

[Guest guest]

Dear Lynn,

You are doing exceptionally well with your mother. I did many of the same

things you are doing in letting Don know the things he was seeing was like

a movie. We talked many times about what he was seeing. He would tell me

all about it as if he was seeing it for real.

Sharon's related experience was so vividly, and emotionally, related as an

LBD person would do, that I was particularly moved by it. It felt as if I

was there with her in the experience. And, how many such experiences do our

LOs have every day, and all day?

It is humbling to the caregiver to witness such gravity. What does it feel

like to the LBD person who is living it?

Love a Lot,

Imogene

In a message dated 7/5/2010 6:37:16 A.M. Central Daylight Time,

beindreher@... writes:

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

------------------------------------

Welcome to LBDcaregivers.

[Guest guest]

hi sheila,

 

please consult your doctor with the recommendation dosages for tkaing her off

seroquel.  as may people react differntly and your mother may need to taper

much slower or for a longer peroid of time than others for for nota as long asd

that should really be discussed in depth with her doctor, ,

 

andd you siad soething aobut fears and most lbd'ers are abel to be reationalized

out of their fears,  hmmmmm  i think the odds on taht are moe like 50/50, i

htink it depends on several factors,  bedise their lecvel of cognition at the

time of teh read but also on the fear itself, fear of fire,  well if there are

no flames and smokes maybe taht can be convinced out of them,  but fear of

people spying on them like my daddys fear that all teh nieghbors wiere withe the

kgb or cia, we just couldnt convince daddy that it wasnt true, he would get so

upset when i lfet and i wasnt home at a certaimn time, boy was he able to tell

time when i was gone, but when i was there, cuoldnt tell 2am from 6 pm  how

wierd was that. 

 

i have some fears that are unreasonable too. and some donnie dcan ease me out of

but othere, like paranoid, like my daddy you cant convince me that soething isnt

going on  like somone watching me or studying me and my habits to come get me

or rob from me etc.  i try to rationaliza my way out of it, but that doesn

twork at all,  so it just depends on so many differtn cirucmstances,  again my

personal opinoin based on daddy adn me.  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

To: LBDcaregivers

Date: Tuesday, July 6, 2010, 11:11 AM

 

Lynn,

Yes, my mother had the " theft " issues as well, accusing someone of taking her

jewelry and her " mother's table and chairs. " The difference I'm seeing in Mom

vs. other LBDers was that even early in the disease there was no way to

rationalize her out of these fears. All the hugs we gave and reassurances that

" we'll take care of you " and " the doors and windows are locked and it's safe

here " she brushed away and complained angrily all the next day that " you didn't

call 911. " I tried having her touch her mother's marble top table and feel its

coolness and smoothness and reassure her that it's right here, but she still

insisted " they took it. " On and on and over and over. Same thing with jewelry

that she could hold in her hand and she still insisted " they stole it. " Only

after Seroquel dosage was established did those fears subside.

Which brings up another issue: could you please give me more detail about

discontinuing your mother's Seroquel? My mother is now bedbound, never moving

her legs, and only occasionally and randomly moving upper extremities, rarely

talking. Did the doctor give you specific criteria for why he believed it was OK

to withdraw Seroquel? Can you be more specific about the dosages for tapering

off? This is definitely something I would consider, at least in the daytime, for

my mother if the goal of more alertness with peace could be achieved.

It is wonderful that your mother is enjoying calm days now. Thank you for your

contributions here in this group.

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

>

> 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

>

[Guest guest]

wow what great references,  very impressed lynn,  adn that made me feel useful

but also helped me understand too., htanks honey  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

To: LBDcaregivers

Date: Tuesday, July 6, 2010, 7:23 AM

 

Continuing this thread, again extracts are included here:

< I have heard many write that when the diagnostic tests are given

(repeating numbers back; telling so many words in 30 seconds that start with a

certain letter) our LBD LOs actually score very high on that level which, I

think, makes it even harder for them to accept and understand what just

happened. (Joan) >

< He breaks my heart when he's scared.Itried your suggestion last

night and though it made him mad that I thought he was crazy,we calmed that down

and it actually helped.He even slept more at peace than he has in a while.We'll

keep working on it. (JoAnn) >

< ...she said she culd watch my eyse and see the spratks of recongnition going

off so she knwe what to talk about to help me. kof course this is no guarnatee

but i htink i am in such early statges that this woll work for awhile. (Sharon)

>

When Mom was first diagnosed (early 2006 at the age of 85) with Mild Cognitive

Impairment (with the possibility of Alzheimer's, Lewy Body Dementia and/or

Parkinsons), I chose not to tell her. I'm not sure if that made her fear as the

disease progressed more of a problem for her; she knew something wasn't right.

But, she trusted me, as she always did, and my presence seemed to be more needed

than the truth. When she would express fear, I would reassure her that she was

okay and that she wasn't alone. Those expressions are still offered when she

expresses fear, although that happens less now than in the earlier stages. As

for the cognitive level referenced by Joan, my mother still (at this late stage)

will be entirely lucid at times. Several days ago when I told Mom I was leaving

but would check on her " tomorrow " , she first " tsk'd " and then asked " What time? "

<smile> That has historically been her question because she always had to plan

her time. It's so

heartwarming to hear her still ask that me what time.

At this point, I'll emphasize one of the things that Donna and others have

referenced so many times. When there are periods of confusion and/or heightened

fatigue, please consider the possibility of a UTI. Periods of fatigue and/or

confusion are always present at times with our loved ones but when they go

beyond a few days, always consider a UTI. I stress this because Mom has them

repeatedly and each one seems to take her further down in her decline. It was

when she was recovering from a UTI and the antibiotics that she would most often

express fear. Consider Sharon's explanation of losing time...the course of a UTI

could span a week or more because of the difficulty in making a potential

diagnosis. Add to that lab time for culturing the specimen and then 7-10 days

for antibiotics plus a few days to clear the antibiotics from the system (I

believe antibiotics also cloud my mother's memory) and you have a month of lost

time. Imagine that the cloud clears

after a month...add in the memory issues...and you can see where fear might

arise. As a side note, I've been reading on UTIs for some time now. It is

recommended that elderly patients be given longer periods of antibiotics to

ensure the infection is cleared. For women, it is 10 days; for men, it is 14

days.

With regard to Sharon's comments about her friend watching her eyes... I've been

talking with another family member at Mom's facility. Her loved one has some of

the hallmark signs of LBD and she has read information left for her. One of the

things she mentioned is that she watches her mother's eyes and can see that

there is a difference. She can see the recognition that Sharon mentions. More

important than that understanding is that she is now aware of the difficulties

with the medication issue and will be able to stay on top of it.

All we can do is continue to pass on information to others. Staff at Mom's

facility (even the Director) has asked for more information and it is gladly

given to them. The proof of their attention to the paperwork supplied is that

they now speak with me about signs that they might be picking up...subtle signs

that might otherwise have been missed and that were never noticed by either the

resident's physician or family. It spreads beyond that, too...one of the women

who offered additional care for Mom in the past became familiar with the

symptoms and cognitive fluctuations. She is now caring for another person, still

in their own home, and has noticed the same telltale things occurring. She had

me speak to the family member who has now done research and is contacting an

LBD-savvy physician for further treatment of her mother. The circle of knowledge

grows in ways unknown to us...

I apologize for the length of this message. Thanks for reading all the way to

this point.

Best wishes,

Lynn

[Guest guest]

marilyn

 

yes he has a lot of good people wathicng over him including a great sister who

is sticking with her guns no matter what,  hugs. sharon

 

a note/after thought, if is very very hard to admit tht you cant do something

anynmore, for anyonje esp for an lbder.  i nkow because for the past 2 weeks i

have been batlling a decision to wirthdraw my promise to cross stitch two

sqaures to be quilted for charity  i idd the firs one successfully well with a

few minto error that were not noticle but he postioffice machine was hngry and

tore up the envoelo pand my beaufiul stitching too. sighhh. so my second attmept

was taken apart 2 times before i gave up and then my attempt to don an angel for

another quilt, well that failed misteralby as i did the wings in two eentriely

different coloors, not even close enough more like total opposites  so it wasnt

able to bs my wyat around it. so i had to throw in teh towel and say i cannot

live up to m y promises.  ok so crosstitchng quilt squares may not be important

to eveone but it was somehtint i used to be able to do an dloved it, was

hnmpnotized once into

thinking eery stitch sewn was a stitch for healing me. so this decioin was very

detrimental to me,  fortuantely teh group i corss stitch for is very very

understanding adn have told me to not owrry about doing big pieces but to make

smaller ones like for greeting cardsa nd for bookmarks, even if it means just

putting corsses haphazardly on a cloth and let my own wild desgiin form and not

worry aout what anyone else things aoubit it, beucase the peopel dwho are

getting them are very sick or have been thru exreme violence and have no wordly

posseisons of their own so they would be happy with anyting i stitched for them

to be used in the projects. eventhough i knew the gruop fo friends would be

supportive of me, i twas still so afraid to admit i couldnt do it and worse than

that SCARED to admit i cant do it anymoer.  scared of losing more things that i

used to be able to do. sigh,   admission of losing nmore was tought and

hurtful to me, made me cry

more and get sadder, have to be so careful of clinical depression setting in. .

adn taking a hold of me again,  sigh.  adn i am sure she wont be the last

either. sigh.   so understand that the fear is of losing not just what we

lost, like my stitching but of the futuer what else am i going ot NOT be ale to

do and when , later today, tomorrow next wekk.  etc.  hugs. sharon   ihope

this makes sense as you can see this has stressed me out and put me in a lbd

panic attack  sigh  

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

To: LBDcaregivers

Date: Tuesday, July 6, 2010, 5:04 PM

 

Hi Joan

Thank you, I know you are right.

For now I will continue to take it one day at a time and just

make sure he is safe and healthy and visit him daily. Between my

husband, me and the case managers we have a lot of good people

watching out for him.

Hugz

Marilyn in Wisconsin

>

> HI Marilyn,

> So sad about your brother. The Adult Protective Services will watch him and

they will make sure that he gets a suitable place to stay...if not, then he will

end up in the ALF anyway. I know it will be tough for you to go through all of

the red tape to get guardianship...but..who knows...maybe he will sign himself

in.