theft/personality changes

[Guest guest]

hi there,

 

i am sharon and my dad had lbd adn died in 2005 and i hace been diagnosed with

teh probablitlyt of 99% of lbd myself, the only way to get 100% diagnsosis is by

autospsy adn sorry i plan on using my brain as long as i can,  sorry some warped

humor there, 

 

as for theft  most lbd'ers wrong ly accuse someone of stealing from there

becuase of hteir fears of losing everything.   my dad accused me of stealing

hinm blind and was very uygly to me which was becuase the frontal lobe part of

hte brain is mostly affected by lbd and the is part of the brain that conrrols

tact, moral issues, adn diplomach aas well as sexual appropriateness. 

 

before my daddy got to pureed foods he would eat all the time , and still lsoe

weight,  with pureed foods make milksahkes and floats let her drink that and

enjoy it,  try to keep as high of calorie intake you can unles she is no speical

diet for diabetes or oheart.  they seem to burn a lot of ccalories as many loved

ones lost a significatnt amount of weight at the end there.  ensure is a great

filling drink for loack of appetite and has a lot of calories and nturirtiuo

too. 

 

i wish you luck and ask lots of questions you are on the roller coaster cride

that is called lgd.   take care fo hyourse,f and do hte best you can , take care

and hgus. sharon   ee 

 

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: LBD Caregiver message.

To: " ladyandhertramp "

Date: Saturday, July 3, 2010, 1:34 AM

Hi, I am new, yet I know I belong here. My mom was thought to have

parkinsons for many years. Mom had a bilateral break of both shoulders and the

year after that, in 2005 Dad died. After that it was continuous falls and

obvious motor problems (walking, talking etc.) until most recently. She is now

immobile, in bed or the wheel chair all day. I have 24/7 help for her. The

worst thing aside from the torture of watching my mom deterriorate, is

finding out that my brother extorted 750,000 from poor mom, forging checks,

exploiting her illness and making her write huge checks out to him. This went

on for two years. I became aware of this when I needed to use my POA and my

succesorship to take over in May. As imagined it was devestating, but i am

still talking to my only brother. This has just been the worst cherry on

top of the lBD situation that I think I could have gotten. Anyone go through

this. I had Adult Protective services on mom's side, but did not want to

pursue because it would land my brother in jail for many years if n

(08:15:06) (rose123): not a alife time. Since he has a wife and seven

kids, although he deserved this punishment, I have only one brother, and

little family, aside from my kids who are married and have their own families

to

care for. My greatests support is my husband and the lawyers involved in

setting up mom's living trust. I wanted to know what the last stage of this

monster disease has in store for mom. please inform me if you can about the

last stage. She is having some trouble swallowing, which has become

progressively worse later, needing smaller and pureed food. The excellon patch

seems to be helping and as a trade mark to this disease, mom can be very

lucid one day and then confused the next. However, she has been on the patch

for only three weeks. I and the aides have seen very little interms of

halucianations. We have no behavior problems with her right now, except that

sometimes she wakes up ( i stay there often) in the middle of the night and

insists it's morning. Is this common? Otherwise her personality is so sweet

and calm, unlike her usual controlling personality. Has anybody experienced

any of this, with the theft and the personality changes. I know the

personality changes are not uncommon in LBD and I am happy that the personality

is

going in a positive direction. Any and all your comments are graciously

wanted and accepted.

God Bless you all!

[Guest guest]

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]

Thank you for the wonderful post...putting all of the comments together in one

post makes it so much easier to see all the different things that our LOs say/do

that seem so insignificant at the time - especially the first several times.

And, I do think that the fear in the statements comes from them being aware of

what happens when they are in a LBD episode afterwards...and then they know that

is not normal, and with LBD information not widespread they are aware that

somethng is wrong but it scares them because unlike ALZ the cognition

fluctuates. 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.

Mom and I talked all the time about this and that and everything else, but she

never really talked to me about what was happening. It must have made her feel

so scared that she didn't even want to talk about it. How do you acknowledge

and tell someone so close to you that you are doing/seeing/hearing strange

things that you know didn't really happen. That leads me to believe that she

was very scared - so scared that she didn't even talk about it. Even after her

evaluation at the Geriatric-Psych Ward, and the definitive diagnosis just a

month after that, she still did not discuss it. I did not discuss it either,

just treated her just the same as I always did.

>

> 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]

Lynn,thank you.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

> >

> > 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]

We started with a UTI which worked its way into dehydration.Fred was in the

hospital overnight twice in less than 2 weeks. The 3rd time he went in the doc

who has seen Fred for years and was so relieved to find out about lewy body

decided he wanted Fred more coherent so he cut him off all his meds.I,of

coarse,cried and fought and tried to get him to study lewy to see he was doing

the worst thing he could do,to no avail.So Fred was lost in Lewyland seriously

for a while.He was only cut off for 2 days when my daughter-in-law threatened a

law suit they put him back on,but we went through all the hallucinations and

violence and fear.They wanted to lock him up in the NH because " noone could take

care of him in this state. " They still don't get it at all.So he's out of the

really bad times,but he's sleeping way too much,drinking way too little,not

eating enough to help,and so full of PD behaviors that he can hardly move.The

docs did this to us over and over for years,but we never knew it was them doing

it.Now we should know.I got Fred an appointment with a new doc an the 14th who

has a partner whose dad had lbd.I'm lost until then,though.Is he dying do you

think? Is there anything I can do to make him better?He's mostly not

hallucinating when he's awake.I can't stand him going and leaving me even tho' I

know it would be better for him.Does anyone have ideas?He lies in bed mostly

stiff as a board making a growly moaning sound.I put dropers of water in his

mouth and get him to drink a little,though he shakes so badly more of it spills

than anything.When I can get him up for an hour or 2 we go outside,but his head

is bent over almost to his knees and I have to hold him or he falls.He's not

drinking enough so he's not peeing enough but is not dehydrated yet.

JoAnn(almost 58) with my Fred(73)of 30 years.How do I make it without him?

> >

> > 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]

Hi Joann,

I am so sorry for all that you and Fred are going through.

It is good that you have that appointment on the 14th with someone who really

has seen this disease through the eyes of a son and not just a doctor who sees

their patients once in a while.

As far as knowing if Fred is dying, I think only a doctor can answer that. I

just know the docs were running a lot of blood tests and it was from that he

told me that Mom's body was in the dying process.

As for the moaning sounds, perhaps he has some pain somewhere...can you try some

Children's Motrin or Tylenol to see if it helps any?

My thoughts and prayers are with you and Fred.

Hugs,

Joan

> > >

> > > 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]

JoAnn,

Bless your heart. You are doing an awesome, loving job caring for your husband.

Keep on trying with the fluids. Hydration is the most important need for any

patient. Without that any other problems we address will not be managed

successfully.

A few ideas:

Offer fluids regularly. Note the time and make an attempt to have him take in

something every hour on the hour. Choosing that point in time is an easy

reminder to the caregiver to try again.

Choose whatever fluids he enjoys. Yes, we so want to make nutrition a priority,

but in my mother's case, she adores cranberry juice cocktail, that it is almost

the only fluid I offer in spite of the amount of sugar contained (thankfully,

she's not diabetic). It would be nice to offer more variety hoping for her to

have a broader spectrum of nutrients, but, the goal is hydration, so we reach

for the cranberry juice that we know she'll drink.

Try thickening the fluids. There are products available at your local drug

store like Thicken and ThickIt (sp?), that can be stirred into fluids to make

them easier to swallow. People with swallowing troubles often do better with

thicker liquids because the texture gives more time for the patient to move the

liquid through the mouth. Thickened fluid gives that brain a little more time

to process what's happening and set up all the complex movements that have to

happen for swallowing to occur.

Use " other " fluids. Don't forget that ice cream, pudding, yogurt, fruit

smoothies, and slushies can all be considered liquid and are often happily

accepted by our LOs.

Check the files here on the list for more tips. Some people (with far more

expertise than my simple ideas) have written detailed articles.

And please let us know how it's going.

Sheila in IN

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

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

>

> We started with a UTI which worked its way into dehydration.Fred was in the

hospital overnight twice in less than 2 weeks. The 3rd time he went in the doc

who has seen Fred for years and was so relieved to find out about lewy body

decided he wanted Fred more coherent so he cut him off all his meds.I,of

coarse,cried and fought and tried to get him to study lewy to see he was doing

the worst thing he could do,to no avail.So Fred was lost in Lewyland seriously

for a while.He was only cut off for 2 days when my daughter-in-law threatened a

law suit they put him back on,but we went through all the hallucinations and

violence and fear.They wanted to lock him up in the NH because " noone could take

care of him in this state. " They still don't get it at all.So he's out of the

really bad times,but he's sleeping way too much,drinking way too little,not

eating enough to help,and so full of PD behaviors that he can hardly move.The

docs did this to us over and over for years,but we never knew it was them doing

it.Now we should know.I got Fred an appointment with a new doc an the 14th who

has a partner whose dad had lbd.I'm lost until then,though.Is he dying do you

think? Is there anything I can do to make him better?He's mostly not

hallucinating when he's awake.I can't stand him going and leaving me even tho' I

know it would be better for him.Does anyone have ideas?He lies in bed mostly

stiff as a board making a growly moaning sound.I put dropers of water in his

mouth and get him to drink a little,though he shakes so badly more of it spills

than anything.When I can get him up for an hour or 2 we go outside,but his head

is bent over almost to his knees and I have to hold him or he falls.He's not

drinking enough so he's not peeing enough but is not dehydrated yet.

JoAnn(almost 58) with my Fred(73)of 30 years.How do I make it without him?

>

[Guest guest]

hi joann,

 

shelia gave some GREAT advice here, and i would like to add to her comment:

 

Try thickening the fluids. There are products available at your local drug store

like Thicken and ThickIt (sp?), that can be stirred into fluids to make them

easier to swallow. People with swallowing troubles often do better with thicker

liquids because the texture gives more time for the patient to move the liquid

through the mouth. Thickened fluid gives that brain a little more time to

process what's happening and set up all the complex movements that have to

happen for swallowing to occur.

 

i personally tasted all the thickening products that were avalalbe in

2004-2005,  many of them have an aftertaste, sorta like that of diet soda, and

some of our loved ones can have tastse buds that are snsitve to certain tastes,

i know my daddy did. ThickIt was the brand we used, and when i sat in his room

and visited him, *that sounds cruel but daddy didnt want me in his room he

prefered donnie in there with him so we obliged his wants, but i was very active

in all caregivivn as daddy wanted me for taht,* i would have a drink with some

thickit in it , i would make the drinks in hsi room so he would see that i am

making both drinks with thick it, and drink with him.  we discovered that

thickening doesnt do well in carbonated drinks. he loved lemonade, and we have

lemon and oragne trees in our yard so i would make the lemonade like they do at

the mall and made fresh orange/lemonade. and thickened it with thick it, and we

would share it. 

 

the fact that i shared it with him eh drank it, he drank it easier. after all

would i give him something taht was good for him if I drank it too????  later

and i mean muhc later, after daddy died it occured to me taht  becuase daddy

had such fear/mistrust issues,  thinkign the cia/kgb were after him/me that

sharing the drink with him made him realize it was 'safe' to drink.  just a few

thoughts on drinking i wanted to share.  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: Saturday, July 10, 2010, 10:26 AM

 

JoAnn,

Bless your heart. You are doing an awesome, loving job caring for your husband.

Keep on trying with the fluids. Hydration is the most important need for any

patient. Without that any other problems we address will not be managed

successfully.

A few ideas:

Offer fluids regularly. Note the time and make an attempt to have him take in

something every hour on the hour. Choosing that point in time is an easy

reminder to the caregiver to try again.

Choose whatever fluids he enjoys. Yes, we so want to make nutrition a priority,

but in my mother's case, she adores cranberry juice cocktail, that it is almost

the only fluid I offer in spite of the amount of sugar contained (thankfully,

she's not diabetic). It would be nice to offer more variety hoping for her to

have a broader spectrum of nutrients, but, the goal is hydration, so we reach

for the cranberry juice that we know she'll drink.

Try thickening the fluids. There are products available at your local drug store

like Thicken and ThickIt (sp?), that can be stirred into fluids to make them

easier to swallow. People with swallowing troubles often do better with thicker

liquids because the texture gives more time for the patient to move the liquid

through the mouth. Thickened fluid gives that brain a little more time to

process what's happening and set up all the complex movements that have to

happen for swallowing to occur.

Use " other " fluids. Don't forget that ice cream, pudding, yogurt, fruit

smoothies, and slushies can all be considered liquid and are often happily

accepted by our LOs.

Check the files here on the list for more tips. Some people (with far more

expertise than my simple ideas) have written detailed articles.

And please let us know how it's going.

Sheila in IN

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

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

>

> We started with a UTI which worked its way into dehydration.Fred was in the

hospital overnight twice in less than 2 weeks. The 3rd time he went in the doc

who has seen Fred for years and was so relieved to find out about lewy body

decided he wanted Fred more coherent so he cut him off all his meds.I,of

coarse,cried and fought and tried to get him to study lewy to see he was doing

the worst thing he could do,to no avail.So Fred was lost in Lewyland seriously

for a while.He was only cut off for 2 days when my daughter-in-law threatened a

law suit they put him back on,but we went through all the hallucinations and

violence and fear.They wanted to lock him up in the NH because " noone could take

care of him in this state. " They still don't get it at all.So he's out of the

really bad times,but he's sleeping way too much,drinking way too little,not

eating enough to help,and so full of PD behaviors that he can hardly move.The

docs did this to us over and over

for years,but we never knew it was them doing it.Now we should know.I got Fred

an appointment with a new doc an the 14th who has a partner whose dad had

lbd.I'm lost until then,though.Is he dying do you think? Is there anything I can

do to make him better?He's mostly not hallucinating when he's awake.I can't

stand him going and leaving me even tho' I know it would be better for him.Does

anyone have ideas?He lies in bed mostly stiff as a board making a growly moaning

sound.I put dropers of water in his mouth and get him to drink a little,though

he shakes so badly more of it spills than anything.When I can get him up for an

hour or 2 we go outside,but his head is bent over almost to his knees and I have

to hold him or he falls.He's not drinking enough so he's not peeing enough but

is not dehydrated yet. JoAnn(almost 58) with my Fred(73)of 30 years.How do I

make it without him?

>

[Guest guest]

oh joann, my dear freind, hugs and more hugs comeing your way, a shooulder to

lean on , an ear to listein to you, ok 2 ears to listen to you, soft smile,  a

heart to love you, arms to hug you, eyes to watchyuo, unfortuanlye that is all i

can do adn from teh cybver world too.

as for advice,  thinking,  how much does he undersatnd,  daddy and i used to

see who could drink the most in a one minutes  or who was teh frsit one to

finshi their drink somehow daddy always won by a hair, would that help you. 

 

you may have to use the straw or eyedropper method alot as that is such a tiny

amount that wont help alot.  maybve his taste buds are overly senstitive and

somethings are too sweet, too sour  too hot too cold,  sometimes it is jsut a

matter of trial and error. can you get him to eat pieces of popsicles, that you

made from jiuces and slushies.  or maybe somthig thicker like a smoothie. 

 

they are so tough to read, one thing worng and we get the same non challant

comment like daddy would say the little man *that iswhat he called lbd* is being

bad agian, and i would havce to figure out what hte little man was doing.  we

dady hurting,  was he scared, hallucinating,  was the kgb or cia after him/me.

it was hard trying to figure it out, sometimes we did, oftne we didnt, and daddy

would be so frustrsated. but you can only do the best you can do.  try not to

let it get ot you ,  write ot us/me and use the source as way to release your

fears and emotions as we understand compleye,  hugs to you, 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: Friday, July 9, 2010, 11:24 AM

 

We started with a UTI which worked its way into dehydration.Fred was in the

hospital overnight twice in less than 2 weeks. The 3rd time he went in the doc

who has seen Fred for years and was so relieved to find out about lewy body

decided he wanted Fred more coherent so he cut him off all his meds.I,of

coarse,cried and fought and tried to get him to study lewy to see he was doing

the worst thing he could do,to no avail.So Fred was lost in Lewyland seriously

for a while.He was only cut off for 2 days when my daughter-in-law threatened a

law suit they put him back on,but we went through all the hallucinations and

violence and fear.They wanted to lock him up in the NH because " noone could take

care of him in this state. " They still don't get it at all.So he's out of the

really bad times,but he's sleeping way too much,drinking way too little,not

eating enough to help,and so full of PD behaviors that he can hardly move.The

docs did this to us over and over for

years,but we never knew it was them doing it.Now we should know.I got Fred an

appointment with a new doc an the 14th who has a partner whose dad had lbd.I'm

lost until then,though.Is he dying do you think? Is there anything I can do to

make him better?He's mostly not hallucinating when he's awake.I can't stand him

going and leaving me even tho' I know it would be better for him.Does anyone

have ideas?He lies in bed mostly stiff as a board making a growly moaning

sound.I put dropers of water in his mouth and get him to drink a little,though

he shakes so badly more of it spills than anything.When I can get him up for an

hour or 2 we go outside,but his head is bent over almost to his knees and I have

to hold him or he falls.He's not drinking enough so he's not peeing enough but

is not dehydrated yet. JoAnn(almost 58) with my Fred(73)of 30 years.How do I

make it without him?

> >

> > 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

> >

>