Re: New member my mother has LBD and Im struggling with decisions

[Guest guest]

I had to write when you mentioned ECT. My mother had 37 ECT treatments

for depression about 40 years ago. It robbed her of her memory, her

personality, and her very self. She had to rebuild a new person from

scratch, not knowing anybody or anything that she had known before. It

was the most horrific thing I have ever witnessed, including her current

illness.

I've not heard of it being used for LBD, but I had to share my mother's

horrible experience with it.

Anyway, welcome to the group . I am also my mother 's guardian,

and she is in a nearby (literally just around the corner from my home)

small nursing home. We are in a small town and it is very nice and

friendly, the residents and staff are like family. She thrives there,

after nearly 3 years, although the first 6 months were pretty tough...

She is being helped by a carefully monitored mix of meds currently, and

they have had to be adjusted twice since her diagnosis just before

entering the nursing home. She has had to go to a psychiatric facility

each time, as the balance of meds has been so delicate.

This is a nightmare of a disease, and unfortunately the possibility

exists that meds cannot always help, although in most cases there tends

to be something eventually that can be found, thankfully. I hope that

some sort of meds can be found for your own mother that will help her,

others here know more about medications than I do, and may have some

suggestions.

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> Hello,

> My name is Sherry and I am 32. I

> have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

[Guest guest]

Sherry, I would never advise you to have your Mom do something or not, but my

mother too has been diagnosed with FTD, but I happen to think she has LBD

because she has tremors and balance issues to go along with the dementia, but my

Mom struggled with depression and anxiety for many years before she exhibited

psychotic behavior(seeing people, not believing she was home, not in reality at

all, paranoia). Way before she was diagnosed with dementia, she was given ect to

help her depression. It did not work for her. Her symptoms never subsided. That

was in 2000, in 2009 when she was hospitalized for 7 weeks ECT came up again,

because at that time the Dr was still treating her condition for just

depression, he suggested that ECT was a last resort option. I'm not a

professional but I would think that if there is dementia, or brain shrinkage

that ECT would make that even worse? Short term memory is affected....which is

so for dementia anyway. I don't know if it were my family member if I would put

them through that. I understand your frustration completely, I've been there

with the paranoia and psychotic behavior...its heartwrenching and its so

draining for the caregiver. My mother was in that stage and when things get bad,

whenever she has some sort of infection, she goes through the extreme

confustion. Have they checked her urine? Sometimes even when they treat it it

could be wrong antibiotic. My mom also had the reaction to the

antipsychotics....you have to be very careful with that, that is another reason

why I think my mom has LBD. But I would think that ECT would not be a good thing

for dementia.

I'm so sorry you are going through this. Please hang in there, you need to take

care of yourself also. Its very draining on you, so please find ways to do some

things for yourself.

xoxo

>

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

[Guest guest]

Hi Sherry,

I'm new to the group too. I just did a google search on electroconvulsive

therapy and LBD. Looks like ECT is used with some limited effectiveness on

patients with depression. You didn't say your mother had depression. I would

give this a pass, it sounds like a " kitchen sink " idea (I've tried everything

else, lets throw in the kitchen sink).

Hopefully some of the more knowledgeable group members will comment.

Merlin

>

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

[Guest guest]

Hi Sherry,

Welcome to the group.

What do the doctors hope to achieve with ECT? Many of our loved ones are taking

anti-psychotics but still have episodes of paranoia, etc. What other meds is

your mom taking?

Courage

From: yheryany1

Sent: Monday, January 23, 2012 10:23 PM

To: LBDcaregivers

Subject: New member my mother has LBD and Im struggling with

decisions

Hello,

My name is Sherry and I am 32. I have never joined a support group or

any online chat rooms so I hope that I am doing this correctly. I hope

that someone can help me with the situation my mother is in and find

some support as well.

This is a little long but here is some of my story.

I am the guardian of my mother who just turned 66. She was diagnosed

with Frontotemporal dementia (FTD) in 2008 but the symptoms were

pretty bad then since she had not taken any meds for it so she had it

well before 2008. Her husband decided to divorce her when we found out

her diagnosis so that is why I became her guardian and soon after her

care giver as well. Its been a loooonnnng road and I finally had to

put her in a nursing facility in the memory care unit. She has been

there since March of 2011 and at first she loved it. She has struggled

with paranoia (people stealing her things) since living with me and

had been taking seroquel. The paranoia seemed to go away when she got

to nursing home but it came back when she got used to being there.

Soon the seroquel stopped working and seemed to give her a side affect

the psychiatrist called EPS (it made her become rigid and lean) They

decided to try a different antipsychotic med only this gave her EPS

again. They tried another and in the mean time she stopped thinking

people were stealing her things and moved on to seeing people that

were not really there. They have now diagnosed her with LBD. She has

gotten really bad with the physcosis and they have tried all of the

anitipsychotic meds about 5 or 6 of them and they all cause the same

side affect. Apparently people with LBD are very sensitive to

anitipsychotic meds. They tried another cocktail of meds that did not

include antipsychotics but that worked only for a short time before

the psychosis became bad. She is now in a behavorial center so she she

can be monitored every day by a psychiatrist but he said the only

thing left is ECT electro shock therepy but she has to be approved by

another doctor to see if she is even a canidate for it. I keep

thinking this is so hard to figure out and deal with but whats even

worse is my poor mom having to deal with the pshycosis and side

affects from the meds, its horrible!!!

I have read about ECT and it doesnt seem so bad if that is all that is

left but I could not find anything about using it on LBD. Has anyone

had to resort to this option on a LO if so what was the outcome?

Any info and or support would be greatly appreciated. Also I did not

mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

as well so I have alot on my plate and becoming very stressed.

Thank you in advance for any replys!

[Guest guest]

Hi Sherry,

Welcome to the group.

What do the doctors hope to achieve with ECT? Many of our loved ones are taking

anti-psychotics but still have episodes of paranoia, etc. What other meds is

your mom taking?

Courage

From: yheryany1

Sent: Monday, January 23, 2012 10:23 PM

To: LBDcaregivers

Subject: New member my mother has LBD and Im struggling with

decisions

Hello,

My name is Sherry and I am 32. I have never joined a support group or

any online chat rooms so I hope that I am doing this correctly. I hope

that someone can help me with the situation my mother is in and find

some support as well.

This is a little long but here is some of my story.

I am the guardian of my mother who just turned 66. She was diagnosed

with Frontotemporal dementia (FTD) in 2008 but the symptoms were

pretty bad then since she had not taken any meds for it so she had it

well before 2008. Her husband decided to divorce her when we found out

her diagnosis so that is why I became her guardian and soon after her

care giver as well. Its been a loooonnnng road and I finally had to

put her in a nursing facility in the memory care unit. She has been

there since March of 2011 and at first she loved it. She has struggled

with paranoia (people stealing her things) since living with me and

had been taking seroquel. The paranoia seemed to go away when she got

to nursing home but it came back when she got used to being there.

Soon the seroquel stopped working and seemed to give her a side affect

the psychiatrist called EPS (it made her become rigid and lean) They

decided to try a different antipsychotic med only this gave her EPS

again. They tried another and in the mean time she stopped thinking

people were stealing her things and moved on to seeing people that

were not really there. They have now diagnosed her with LBD. She has

gotten really bad with the physcosis and they have tried all of the

anitipsychotic meds about 5 or 6 of them and they all cause the same

side affect. Apparently people with LBD are very sensitive to

anitipsychotic meds. They tried another cocktail of meds that did not

include antipsychotics but that worked only for a short time before

the psychosis became bad. She is now in a behavorial center so she she

can be monitored every day by a psychiatrist but he said the only

thing left is ECT electro shock therepy but she has to be approved by

another doctor to see if she is even a canidate for it. I keep

thinking this is so hard to figure out and deal with but whats even

worse is my poor mom having to deal with the pshycosis and side

affects from the meds, its horrible!!!

I have read about ECT and it doesnt seem so bad if that is all that is

left but I could not find anything about using it on LBD. Has anyone

had to resort to this option on a LO if so what was the outcome?

Any info and or support would be greatly appreciated. Also I did not

mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

as well so I have alot on my plate and becoming very stressed.

Thank you in advance for any replys!

[Guest guest]

Hi Sherry,

Welcome to the group.

What do the doctors hope to achieve with ECT? Many of our loved ones are taking

anti-psychotics but still have episodes of paranoia, etc. What other meds is

your mom taking?

Courage

From: yheryany1

Sent: Monday, January 23, 2012 10:23 PM

To: LBDcaregivers

Subject: New member my mother has LBD and Im struggling with

decisions

Hello,

My name is Sherry and I am 32. I have never joined a support group or

any online chat rooms so I hope that I am doing this correctly. I hope

that someone can help me with the situation my mother is in and find

some support as well.

This is a little long but here is some of my story.

I am the guardian of my mother who just turned 66. She was diagnosed

with Frontotemporal dementia (FTD) in 2008 but the symptoms were

pretty bad then since she had not taken any meds for it so she had it

well before 2008. Her husband decided to divorce her when we found out

her diagnosis so that is why I became her guardian and soon after her

care giver as well. Its been a loooonnnng road and I finally had to

put her in a nursing facility in the memory care unit. She has been

there since March of 2011 and at first she loved it. She has struggled

with paranoia (people stealing her things) since living with me and

had been taking seroquel. The paranoia seemed to go away when she got

to nursing home but it came back when she got used to being there.

Soon the seroquel stopped working and seemed to give her a side affect

the psychiatrist called EPS (it made her become rigid and lean) They

decided to try a different antipsychotic med only this gave her EPS

again. They tried another and in the mean time she stopped thinking

people were stealing her things and moved on to seeing people that

were not really there. They have now diagnosed her with LBD. She has

gotten really bad with the physcosis and they have tried all of the

anitipsychotic meds about 5 or 6 of them and they all cause the same

side affect. Apparently people with LBD are very sensitive to

anitipsychotic meds. They tried another cocktail of meds that did not

include antipsychotics but that worked only for a short time before

the psychosis became bad. She is now in a behavorial center so she she

can be monitored every day by a psychiatrist but he said the only

thing left is ECT electro shock therepy but she has to be approved by

another doctor to see if she is even a canidate for it. I keep

thinking this is so hard to figure out and deal with but whats even

worse is my poor mom having to deal with the pshycosis and side

affects from the meds, its horrible!!!

I have read about ECT and it doesnt seem so bad if that is all that is

left but I could not find anything about using it on LBD. Has anyone

had to resort to this option on a LO if so what was the outcome?

Any info and or support would be greatly appreciated. Also I did not

mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

as well so I have alot on my plate and becoming very stressed.

Thank you in advance for any replys!

[Guest guest]

Hi

I am so sorry for what you are going through. I would not allow ect and for LBD

it would be highly experimental! It also sounds like your mother could have

Parkinson's symptoms since some of these medications made her rigid. Does she

fall a lot? To my knowledge ECT is not a good idea at all with that present.

The brain is already bring damaged by the disease process why damage it more?

What in the world are the goals to all this heavy artillery and other treatment?

Does this doctor just want to render your mother unable to do anything or be

complacent so her care is not do needy or what? You may be having to ask some

very tough questions and also I urge you to read up here and on the LBD board

as much as possible. The more you know and understand about this the better

advocate you will be and be able to stand up and ask those hard questions when

faced with a situation like this.

It is so very hard to do, I know, I cared for my mother in law for several years

and went through a few trials like this and there are peole here who have gone

through them too and are in the midst of these kind of things. Unfortunately

there are not enough doctors that know how to best manage LBD who medicate with

wrong drugs and too high doses and cocktails of drugs, etc. Most often the case

is this causes far more harm than good and there is no scientific backing for

much of it.

What worked best for my mil was take away most everything except Exelon patch

every day (pill was not good with her and caused problems), trazadone and

melatonin at night to help sleep, a lot of physical exercise and activities and

keep vigilant for infections like urinary tract infections etc because those

will often cause upset behavior and hallucinations, agitation etc. In the US

there are diagnostic centers that have specialists who specialize in the

diagnosis and treatment/management of this. The local Alzheimer's association

can guide you some with local support for LBD if there is any in your area and

maybe how to get to a place that can better care for your mother, again if there

is something more suitable for her.

There are many types if drugs that make this illness and the behaviors worse and

some can even cause death. This group has a list. Do you have a complete list

of the drugs this facility has given your mother and the time periods so perhaps

later they can be looked at for drug reaction/interactions? And also,

especially important, do you have a list of all current drugs she is being

given? Does she get physical therapy and exercise and daily activities?

Physical therapy and exercise and suitable activities work better than most

drugs. Has this doctor sat down and explained what the goals of his treatment

are in detail and why he thinks x drugs or ect might get there?

There is a member here who's mother went into the hospital and less than a month

later was on hospice care unable to move speak or even do much to eat and drink

because a hot shot neurologist insisted on heavy drugs and nearly did her in

along with convincing her son with power of attorney that was the thing to do.

Her daughter worked hard to get her out and last I heard a couple of weeks ago

her mother was home walking talking eating drinking and not wanting drugs

because of what she went through. Don't get me wrong - she wasn't all better

and there was residual from what she was treated with but she was improved and

having some quality of life. This is a goal I found key for decisions I had to

make - quality of life and will this drug or treatment or facility provide the

best quality of life?

You are in a tough place of having to advocate for you mother and keep those who

are accustomed to trying drugs and drug cocktails from causing more harm and

helping to manage you mom' s care as this disease wreaks havoc on her. To me it

was like trying to control a plane crash to make it as easy and compassionate

and as loving as possible. I was 39 years old when my mil needed more and more

help for managing her life. I'm 52 now and she recently died peacefully. It

was so hard and I had to give up a lot but I am so glad I could rise to the

cause.

This group is the best and gave me strength and knowledge and a lot of

compassion I needed to do the best I could in caring for my mil. I hope you

also find this here for your self as well.

- Dorothy

from cell phone

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

[Guest guest]

Hi

I am so sorry for what you are going through. I would not allow ect and for LBD

it would be highly experimental! It also sounds like your mother could have

Parkinson's symptoms since some of these medications made her rigid. Does she

fall a lot? To my knowledge ECT is not a good idea at all with that present.

The brain is already bring damaged by the disease process why damage it more?

What in the world are the goals to all this heavy artillery and other treatment?

Does this doctor just want to render your mother unable to do anything or be

complacent so her care is not do needy or what? You may be having to ask some

very tough questions and also I urge you to read up here and on the LBD board

as much as possible. The more you know and understand about this the better

advocate you will be and be able to stand up and ask those hard questions when

faced with a situation like this.

It is so very hard to do, I know, I cared for my mother in law for several years

and went through a few trials like this and there are peole here who have gone

through them too and are in the midst of these kind of things. Unfortunately

there are not enough doctors that know how to best manage LBD who medicate with

wrong drugs and too high doses and cocktails of drugs, etc. Most often the case

is this causes far more harm than good and there is no scientific backing for

much of it.

What worked best for my mil was take away most everything except Exelon patch

every day (pill was not good with her and caused problems), trazadone and

melatonin at night to help sleep, a lot of physical exercise and activities and

keep vigilant for infections like urinary tract infections etc because those

will often cause upset behavior and hallucinations, agitation etc. In the US

there are diagnostic centers that have specialists who specialize in the

diagnosis and treatment/management of this. The local Alzheimer's association

can guide you some with local support for LBD if there is any in your area and

maybe how to get to a place that can better care for your mother, again if there

is something more suitable for her.

There are many types if drugs that make this illness and the behaviors worse and

some can even cause death. This group has a list. Do you have a complete list

of the drugs this facility has given your mother and the time periods so perhaps

later they can be looked at for drug reaction/interactions? And also,

especially important, do you have a list of all current drugs she is being

given? Does she get physical therapy and exercise and daily activities?

Physical therapy and exercise and suitable activities work better than most

drugs. Has this doctor sat down and explained what the goals of his treatment

are in detail and why he thinks x drugs or ect might get there?

There is a member here who's mother went into the hospital and less than a month

later was on hospice care unable to move speak or even do much to eat and drink

because a hot shot neurologist insisted on heavy drugs and nearly did her in

along with convincing her son with power of attorney that was the thing to do.

Her daughter worked hard to get her out and last I heard a couple of weeks ago

her mother was home walking talking eating drinking and not wanting drugs

because of what she went through. Don't get me wrong - she wasn't all better

and there was residual from what she was treated with but she was improved and

having some quality of life. This is a goal I found key for decisions I had to

make - quality of life and will this drug or treatment or facility provide the

best quality of life?

You are in a tough place of having to advocate for you mother and keep those who

are accustomed to trying drugs and drug cocktails from causing more harm and

helping to manage you mom' s care as this disease wreaks havoc on her. To me it

was like trying to control a plane crash to make it as easy and compassionate

and as loving as possible. I was 39 years old when my mil needed more and more

help for managing her life. I'm 52 now and she recently died peacefully. It

was so hard and I had to give up a lot but I am so glad I could rise to the

cause.

This group is the best and gave me strength and knowledge and a lot of

compassion I needed to do the best I could in caring for my mil. I hope you

also find this here for your self as well.

- Dorothy

from cell phone

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

[Guest guest]

Hi

I am so sorry for what you are going through. I would not allow ect and for LBD

it would be highly experimental! It also sounds like your mother could have

Parkinson's symptoms since some of these medications made her rigid. Does she

fall a lot? To my knowledge ECT is not a good idea at all with that present.

The brain is already bring damaged by the disease process why damage it more?

What in the world are the goals to all this heavy artillery and other treatment?

Does this doctor just want to render your mother unable to do anything or be

complacent so her care is not do needy or what? You may be having to ask some

very tough questions and also I urge you to read up here and on the LBD board

as much as possible. The more you know and understand about this the better

advocate you will be and be able to stand up and ask those hard questions when

faced with a situation like this.

It is so very hard to do, I know, I cared for my mother in law for several years

and went through a few trials like this and there are peole here who have gone

through them too and are in the midst of these kind of things. Unfortunately

there are not enough doctors that know how to best manage LBD who medicate with

wrong drugs and too high doses and cocktails of drugs, etc. Most often the case

is this causes far more harm than good and there is no scientific backing for

much of it.

What worked best for my mil was take away most everything except Exelon patch

every day (pill was not good with her and caused problems), trazadone and

melatonin at night to help sleep, a lot of physical exercise and activities and

keep vigilant for infections like urinary tract infections etc because those

will often cause upset behavior and hallucinations, agitation etc. In the US

there are diagnostic centers that have specialists who specialize in the

diagnosis and treatment/management of this. The local Alzheimer's association

can guide you some with local support for LBD if there is any in your area and

maybe how to get to a place that can better care for your mother, again if there

is something more suitable for her.

There are many types if drugs that make this illness and the behaviors worse and

some can even cause death. This group has a list. Do you have a complete list

of the drugs this facility has given your mother and the time periods so perhaps

later they can be looked at for drug reaction/interactions? And also,

especially important, do you have a list of all current drugs she is being

given? Does she get physical therapy and exercise and daily activities?

Physical therapy and exercise and suitable activities work better than most

drugs. Has this doctor sat down and explained what the goals of his treatment

are in detail and why he thinks x drugs or ect might get there?

There is a member here who's mother went into the hospital and less than a month

later was on hospice care unable to move speak or even do much to eat and drink

because a hot shot neurologist insisted on heavy drugs and nearly did her in

along with convincing her son with power of attorney that was the thing to do.

Her daughter worked hard to get her out and last I heard a couple of weeks ago

her mother was home walking talking eating drinking and not wanting drugs

because of what she went through. Don't get me wrong - she wasn't all better

and there was residual from what she was treated with but she was improved and

having some quality of life. This is a goal I found key for decisions I had to

make - quality of life and will this drug or treatment or facility provide the

best quality of life?

You are in a tough place of having to advocate for you mother and keep those who

are accustomed to trying drugs and drug cocktails from causing more harm and

helping to manage you mom' s care as this disease wreaks havoc on her. To me it

was like trying to control a plane crash to make it as easy and compassionate

and as loving as possible. I was 39 years old when my mil needed more and more

help for managing her life. I'm 52 now and she recently died peacefully. It

was so hard and I had to give up a lot but I am so glad I could rise to the

cause.

This group is the best and gave me strength and knowledge and a lot of

compassion I needed to do the best I could in caring for my mil. I hope you

also find this here for your self as well.

- Dorothy

from cell phone

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

[Guest guest]

Hi, Sherry.

I've never heard of electro-shock therapy being used for dementia,

especially not LBD. I would strongly advise against it. I can't imagine

how they think it would help.

My sister had electroshock therapy some 20 years ago, ostensibly to deal

with very severe depression. It was a disaster. At the time, I went to

see a counselor just to try to figure out what was happening with my sister

and how to deal with her. I asked about the electroshock therapy and my

counselor was shocked that it was even considered. She called it

absolutely barbaric. My strong-willed sister never did recover her strong

will. It took months for her to recover even some of her memories.

I would insist on some very solid justification before giving a go-ahead on

this.

Kate

> **

>

>

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

Hi, Sherry.

I've never heard of electro-shock therapy being used for dementia,

especially not LBD. I would strongly advise against it. I can't imagine

how they think it would help.

My sister had electroshock therapy some 20 years ago, ostensibly to deal

with very severe depression. It was a disaster. At the time, I went to

see a counselor just to try to figure out what was happening with my sister

and how to deal with her. I asked about the electroshock therapy and my

counselor was shocked that it was even considered. She called it

absolutely barbaric. My strong-willed sister never did recover her strong

will. It took months for her to recover even some of her memories.

I would insist on some very solid justification before giving a go-ahead on

this.

Kate

> **

>

>

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

[Guest guest]

Hi Sherry,

I am so sorry to hear about your mom. Sometimes if an LBD patient is ever given

Ativan it has an opposite effect for a person with LBD than what it was meant to

do, and has an adverse effect. It can cause aggressive behavior problems that

sometimes will never get better, because LBD patients can also be sensitive to

Ativan. Do you know if your mom was ever given Ativan? You are right about LBD

patients being sensitive to Antipsychotics. LBDers can be sensitive to many

medications, and although not everyone will be effected the same way by a

medication, most are sensitive to Antipsychotics such as Haldol, but Seroquel by

most LBDers, but not all, seems to work ok.

I don't know about the electro shock therapy, my husband didn't have experience

with that.

I just wanted to warn you about the Ativan and if your mom has had that. I know

some LBDers take Ativan with no problem, but  I have heard of those that had

adverse side effects with it in this group and have been kicked out of nursing

homes because they were given that medication and became very aggressive. If

your mom was given a cocktail of various medications instead of antipsychotics

that may have been one of the medications included in the cocktail and she may

have had an adverse reaction to it. From what I have read it never gets better

after the adverse side effect from that medication. I am sorry to tell you this

and I hope that this was not one of the medications given to her, but I just

wanted to warn you about this medication for LBDers.

You have your hands full with a 12 year old and a baby, it is stressful to deal

with this disease to begin with let alone having kids to care for too. I hope

you are getting more help than just you taking all this on. Your health is

important too!

I hope you can find some answers here to help you.

Jan Colello, San Francisco Bay Area, East Bay

Husband, Jim, dx w/LBD 2003

Deceased, January 2011

________________________________

To: LBDcaregivers

Sent: Monday, January 23, 2012 7:23 PM

Subject: New member my mother has LBD and Im struggling with

decisions

Hello,

My name is Sherry and I am 32. I have never joined a support group or

any online chat rooms so I hope that I am doing this correctly. I hope

that someone can help me with the situation my mother is in and find

some support as well.

This is a little long but here is some of my story.

I am the guardian of my mother who just turned 66. She was diagnosed

with Frontotemporal dementia (FTD) in 2008 but the symptoms were

pretty bad then since she had not taken any meds for it so she had it

well before 2008. Her husband decided to divorce her when we found out

her diagnosis so that is why I became her guardian and soon after her

care giver as well.  Its been a loooonnnng road and I finally had to

put her in a nursing facility in the memory care unit. She has been

there since March of 2011 and at first she loved it. She has struggled

with paranoia (people stealing her things) since living with me and

had been taking seroquel. The paranoia seemed to go away when she got

to nursing home but it came back when she got used to being there.

Soon the seroquel stopped working and seemed to give her a side affect

the psychiatrist called EPS (it made her become rigid and lean) They

decided to try a different antipsychotic med only this gave her EPS

again. They tried another and in the mean time she stopped thinking

people were stealing her things and moved on to seeing people that

were not really there. They have now diagnosed her with LBD. She has

gotten really bad with the physcosis and they have tried all of the

anitipsychotic meds about 5 or 6 of them and they all cause the same

side affect. Apparently people with LBD are very sensitive to

anitipsychotic meds. They tried another cocktail of meds that did not

include antipsychotics but that worked only for a short time before

the psychosis became bad. She is now in a behavorial center so she she

can be monitored every day by a psychiatrist but he said the only

thing left is ECT electro shock therepy but she has to be approved by

another doctor to see if she is even a canidate for it. I keep

thinking this is so hard to figure out and deal with but whats even

worse is my poor mom having to deal with the pshycosis and side

affects from the meds, its horrible!!!

I have read about ECT and it doesnt seem so bad if that is all that is

left but I could not find anything about using it on LBD. Has anyone

had to resort to this option on a LO if so what was the outcome?

Any info and or support would be greatly appreciated. Also I did not

mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

as well so I have alot on my plate and becoming very stressed.

Thank you in advance for any replys!

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

Welcome to LBDcaregivers. 

[Guest guest]

Hi, my name is barb, i just wanted to give everyone a update on my mother, she

went into the hospital dec 2, for hallucination, Her neuro dr. day before said a

few test confirmed she had LBD, Drs, in the hospital had never heard of LDB, so

they decided they would treat her like a demenia patient, plus gave her a

cocktail of pills, for her hallucination, she declined so fast, laid in her bed,

cried for hours, couldnt walk, feed herself, she had a dr. come in and told my

mother there was nothing he could do, from that point on, we felt she had just

given up, wouldnt eat, couldnt get up out of bed some days,drs. from Mayo said

theyve never heard of anyone going down that fast,  the 26th of Dec, they

sent her home, thinking she may have 2 wks left, after 3 days on the bad

medicine, we told the drs. to take her off everything, which they did,we took

her home!!Smiles!!   I asked everyone everyday to pray for my mom, I believe

in MIRACLES!!!  Since Dec 2,

Six of her children have been with her around the clock, my shift is Thurs thru

Sat, last sat, we got up, mother ate (feeding herself) a big breakfast, we went

shopping , then took a ride downtown INdpls, she loved it it was her first

outing, this weekend we're  going  shopping again, shes doing everything

herself, She takes excedrin everyday, and sqeraril (low dose) every evening

helps her sleep, (in her own bed)!!  GOD IS GOOD!!  She does not see the lil

people anylonger.  Thank you God for giving us our mother back !!  Sorry this

was so long, but i wanted you to know she is doing better, going to a new neuro

the 31st to see what he thinks. wil keep you updated!!  God

Bless         ...  Barb

To: " LBDcaregivers " <LBDcaregivers >

Sent: Tuesday, January 24, 2012 12:08 PM

Subject: Re: New member my mother has LBD and Im struggling with

decisions

 

Hi

I am so sorry for what you are going through. I would not allow ect and for LBD

it would be highly experimental! It also sounds like your mother could have

Parkinson's symptoms since some of these medications made her rigid. Does she

fall a lot? To my knowledge ECT is not a good idea at all with that present. The

brain is already bring damaged by the disease process why damage it more? What

in the world are the goals to all this heavy artillery and other treatment? Does

this doctor just want to render your mother unable to do anything or be

complacent so her care is not do needy or what? You may be having to ask some

very tough questions and also I urge you to read up here and on the LBD board as

much as possible. The more you know and understand about this the better

advocate you will be and be able to stand up and ask those hard questions when

faced with a situation like this.

It is so very hard to do, I know, I cared for my mother in law for several years

and went through a few trials like this and there are peole here who have gone

through them too and are in the midst of these kind of things. Unfortunately

there are not enough doctors that know how to best manage LBD who medicate with

wrong drugs and too high doses and cocktails of drugs, etc. Most often the case

is this causes far more harm than good and there is no scientific backing for

much of it.

What worked best for my mil was take away most everything except Exelon patch

every day (pill was not good with her and caused problems), trazadone and

melatonin at night to help sleep, a lot of physical exercise and activities and

keep vigilant for infections like urinary tract infections etc because those

will often cause upset behavior and hallucinations, agitation etc. In the US

there are diagnostic centers that have specialists who specialize in the

diagnosis and treatment/management of this. The local Alzheimer's association

can guide you some with local support for LBD if there is any in your area and

maybe how to get to a place that can better care for your mother, again if there

is something more suitable for her.

There are many types if drugs that make this illness and the behaviors worse and

some can even cause death. This group has a list. Do you have a complete list of

the drugs this facility has given your mother and the time periods so perhaps

later they can be looked at for drug reaction/interactions? And also, especially

important, do you have a list of all current drugs she is being given? Does she

get physical therapy and exercise and daily activities? Physical therapy and

exercise and suitable activities work better than most drugs. Has this doctor

sat down and explained what the goals of his treatment are in detail and why he

thinks x drugs or ect might get there?

There is a member here who's mother went into the hospital and less than a month

later was on hospice care unable to move speak or even do much to eat and drink

because a hot shot neurologist insisted on heavy drugs and nearly did her in

along with convincing her son with power of attorney that was the thing to do.

Her daughter worked hard to get her out and last I heard a couple of weeks ago

her mother was home walking talking eating drinking and not wanting drugs

because of what she went through. Don't get me wrong - she wasn't all better and

there was residual from what she was treated with but she was improved and

having some quality of life. This is a goal I found key for decisions I had to

make - quality of life and will this drug or treatment or facility provide the

best quality of life?

You are in a tough place of having to advocate for you mother and keep those who

are accustomed to trying drugs and drug cocktails from causing more harm and

helping to manage you mom' s care as this disease wreaks havoc on her. To me it

was like trying to control a plane crash to make it as easy and compassionate

and as loving as possible. I was 39 years old when my mil needed more and more

help for managing her life. I'm 52 now and she recently died peacefully. It was

so hard and I had to give up a lot but I am so glad I could rise to the cause.

This group is the best and gave me strength and knowledge and a lot of

compassion I needed to do the best I could in caring for my mil. I hope you also

find this here for your self as well.

- Dorothy

from cell phone

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

[Guest guest]

Hi, my name is barb, i just wanted to give everyone a update on my mother, she

went into the hospital dec 2, for hallucination, Her neuro dr. day before said a

few test confirmed she had LBD, Drs, in the hospital had never heard of LDB, so

they decided they would treat her like a demenia patient, plus gave her a

cocktail of pills, for her hallucination, she declined so fast, laid in her bed,

cried for hours, couldnt walk, feed herself, she had a dr. come in and told my

mother there was nothing he could do, from that point on, we felt she had just

given up, wouldnt eat, couldnt get up out of bed some days,drs. from Mayo said

theyve never heard of anyone going down that fast,  the 26th of Dec, they

sent her home, thinking she may have 2 wks left, after 3 days on the bad

medicine, we told the drs. to take her off everything, which they did,we took

her home!!Smiles!!   I asked everyone everyday to pray for my mom, I believe

in MIRACLES!!!  Since Dec 2,

Six of her children have been with her around the clock, my shift is Thurs thru

Sat, last sat, we got up, mother ate (feeding herself) a big breakfast, we went

shopping , then took a ride downtown INdpls, she loved it it was her first

outing, this weekend we're  going  shopping again, shes doing everything

herself, She takes excedrin everyday, and sqeraril (low dose) every evening

helps her sleep, (in her own bed)!!  GOD IS GOOD!!  She does not see the lil

people anylonger.  Thank you God for giving us our mother back !!  Sorry this

was so long, but i wanted you to know she is doing better, going to a new neuro

the 31st to see what he thinks. wil keep you updated!!  God

Bless         ...  Barb

To: " LBDcaregivers " <LBDcaregivers >

Sent: Tuesday, January 24, 2012 12:08 PM

Subject: Re: New member my mother has LBD and Im struggling with

decisions

 

Hi

I am so sorry for what you are going through. I would not allow ect and for LBD

it would be highly experimental! It also sounds like your mother could have

Parkinson's symptoms since some of these medications made her rigid. Does she

fall a lot? To my knowledge ECT is not a good idea at all with that present. The

brain is already bring damaged by the disease process why damage it more? What

in the world are the goals to all this heavy artillery and other treatment? Does

this doctor just want to render your mother unable to do anything or be

complacent so her care is not do needy or what? You may be having to ask some

very tough questions and also I urge you to read up here and on the LBD board as

much as possible. The more you know and understand about this the better

advocate you will be and be able to stand up and ask those hard questions when

faced with a situation like this.

It is so very hard to do, I know, I cared for my mother in law for several years

and went through a few trials like this and there are peole here who have gone

through them too and are in the midst of these kind of things. Unfortunately

there are not enough doctors that know how to best manage LBD who medicate with

wrong drugs and too high doses and cocktails of drugs, etc. Most often the case

is this causes far more harm than good and there is no scientific backing for

much of it.

What worked best for my mil was take away most everything except Exelon patch

every day (pill was not good with her and caused problems), trazadone and

melatonin at night to help sleep, a lot of physical exercise and activities and

keep vigilant for infections like urinary tract infections etc because those

will often cause upset behavior and hallucinations, agitation etc. In the US

there are diagnostic centers that have specialists who specialize in the

diagnosis and treatment/management of this. The local Alzheimer's association

can guide you some with local support for LBD if there is any in your area and

maybe how to get to a place that can better care for your mother, again if there

is something more suitable for her.

There are many types if drugs that make this illness and the behaviors worse and

some can even cause death. This group has a list. Do you have a complete list of

the drugs this facility has given your mother and the time periods so perhaps

later they can be looked at for drug reaction/interactions? And also, especially

important, do you have a list of all current drugs she is being given? Does she

get physical therapy and exercise and daily activities? Physical therapy and

exercise and suitable activities work better than most drugs. Has this doctor

sat down and explained what the goals of his treatment are in detail and why he

thinks x drugs or ect might get there?

There is a member here who's mother went into the hospital and less than a month

later was on hospice care unable to move speak or even do much to eat and drink

because a hot shot neurologist insisted on heavy drugs and nearly did her in

along with convincing her son with power of attorney that was the thing to do.

Her daughter worked hard to get her out and last I heard a couple of weeks ago

her mother was home walking talking eating drinking and not wanting drugs

because of what she went through. Don't get me wrong - she wasn't all better and

there was residual from what she was treated with but she was improved and

having some quality of life. This is a goal I found key for decisions I had to

make - quality of life and will this drug or treatment or facility provide the

best quality of life?

You are in a tough place of having to advocate for you mother and keep those who

are accustomed to trying drugs and drug cocktails from causing more harm and

helping to manage you mom' s care as this disease wreaks havoc on her. To me it

was like trying to control a plane crash to make it as easy and compassionate

and as loving as possible. I was 39 years old when my mil needed more and more

help for managing her life. I'm 52 now and she recently died peacefully. It was

so hard and I had to give up a lot but I am so glad I could rise to the cause.

This group is the best and gave me strength and knowledge and a lot of

compassion I needed to do the best I could in caring for my mil. I hope you also

find this here for your self as well.

- Dorothy

from cell phone

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

[Guest guest]

Hi, my name is barb, i just wanted to give everyone a update on my mother, she

went into the hospital dec 2, for hallucination, Her neuro dr. day before said a

few test confirmed she had LBD, Drs, in the hospital had never heard of LDB, so

they decided they would treat her like a demenia patient, plus gave her a

cocktail of pills, for her hallucination, she declined so fast, laid in her bed,

cried for hours, couldnt walk, feed herself, she had a dr. come in and told my

mother there was nothing he could do, from that point on, we felt she had just

given up, wouldnt eat, couldnt get up out of bed some days,drs. from Mayo said

theyve never heard of anyone going down that fast,  the 26th of Dec, they

sent her home, thinking she may have 2 wks left, after 3 days on the bad

medicine, we told the drs. to take her off everything, which they did,we took

her home!!Smiles!!   I asked everyone everyday to pray for my mom, I believe

in MIRACLES!!!  Since Dec 2,

Six of her children have been with her around the clock, my shift is Thurs thru

Sat, last sat, we got up, mother ate (feeding herself) a big breakfast, we went

shopping , then took a ride downtown INdpls, she loved it it was her first

outing, this weekend we're  going  shopping again, shes doing everything

herself, She takes excedrin everyday, and sqeraril (low dose) every evening

helps her sleep, (in her own bed)!!  GOD IS GOOD!!  She does not see the lil

people anylonger.  Thank you God for giving us our mother back !!  Sorry this

was so long, but i wanted you to know she is doing better, going to a new neuro

the 31st to see what he thinks. wil keep you updated!!  God

Bless         ...  Barb

To: " LBDcaregivers " <LBDcaregivers >

Sent: Tuesday, January 24, 2012 12:08 PM

Subject: Re: New member my mother has LBD and Im struggling with

decisions

 

Hi

I am so sorry for what you are going through. I would not allow ect and for LBD

it would be highly experimental! It also sounds like your mother could have

Parkinson's symptoms since some of these medications made her rigid. Does she

fall a lot? To my knowledge ECT is not a good idea at all with that present. The

brain is already bring damaged by the disease process why damage it more? What

in the world are the goals to all this heavy artillery and other treatment? Does

this doctor just want to render your mother unable to do anything or be

complacent so her care is not do needy or what? You may be having to ask some

very tough questions and also I urge you to read up here and on the LBD board as

much as possible. The more you know and understand about this the better

advocate you will be and be able to stand up and ask those hard questions when

faced with a situation like this.

It is so very hard to do, I know, I cared for my mother in law for several years

and went through a few trials like this and there are peole here who have gone

through them too and are in the midst of these kind of things. Unfortunately

there are not enough doctors that know how to best manage LBD who medicate with

wrong drugs and too high doses and cocktails of drugs, etc. Most often the case

is this causes far more harm than good and there is no scientific backing for

much of it.

What worked best for my mil was take away most everything except Exelon patch

every day (pill was not good with her and caused problems), trazadone and

melatonin at night to help sleep, a lot of physical exercise and activities and

keep vigilant for infections like urinary tract infections etc because those

will often cause upset behavior and hallucinations, agitation etc. In the US

there are diagnostic centers that have specialists who specialize in the

diagnosis and treatment/management of this. The local Alzheimer's association

can guide you some with local support for LBD if there is any in your area and

maybe how to get to a place that can better care for your mother, again if there

is something more suitable for her.

There are many types if drugs that make this illness and the behaviors worse and

some can even cause death. This group has a list. Do you have a complete list of

the drugs this facility has given your mother and the time periods so perhaps

later they can be looked at for drug reaction/interactions? And also, especially

important, do you have a list of all current drugs she is being given? Does she

get physical therapy and exercise and daily activities? Physical therapy and

exercise and suitable activities work better than most drugs. Has this doctor

sat down and explained what the goals of his treatment are in detail and why he

thinks x drugs or ect might get there?

There is a member here who's mother went into the hospital and less than a month

later was on hospice care unable to move speak or even do much to eat and drink

because a hot shot neurologist insisted on heavy drugs and nearly did her in

along with convincing her son with power of attorney that was the thing to do.

Her daughter worked hard to get her out and last I heard a couple of weeks ago

her mother was home walking talking eating drinking and not wanting drugs

because of what she went through. Don't get me wrong - she wasn't all better and

there was residual from what she was treated with but she was improved and

having some quality of life. This is a goal I found key for decisions I had to

make - quality of life and will this drug or treatment or facility provide the

best quality of life?

You are in a tough place of having to advocate for you mother and keep those who

are accustomed to trying drugs and drug cocktails from causing more harm and

helping to manage you mom' s care as this disease wreaks havoc on her. To me it

was like trying to control a plane crash to make it as easy and compassionate

and as loving as possible. I was 39 years old when my mil needed more and more

help for managing her life. I'm 52 now and she recently died peacefully. It was

so hard and I had to give up a lot but I am so glad I could rise to the cause.

This group is the best and gave me strength and knowledge and a lot of

compassion I needed to do the best I could in caring for my mil. I hope you also

find this here for your self as well.

- Dorothy

from cell phone

> Hello,

> My name is Sherry and I am 32. I have never joined a support group or

> any online chat rooms so I hope that I am doing this correctly. I hope

> that someone can help me with the situation my mother is in and find

> some support as well.

> This is a little long but here is some of my story.

> I am the guardian of my mother who just turned 66. She was diagnosed

> with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> pretty bad then since she had not taken any meds for it so she had it

> well before 2008. Her husband decided to divorce her when we found out

> her diagnosis so that is why I became her guardian and soon after her

> care giver as well. Its been a loooonnnng road and I finally had to

> put her in a nursing facility in the memory care unit. She has been

> there since March of 2011 and at first she loved it. She has struggled

> with paranoia (people stealing her things) since living with me and

> had been taking seroquel. The paranoia seemed to go away when she got

> to nursing home but it came back when she got used to being there.

> Soon the seroquel stopped working and seemed to give her a side affect

> the psychiatrist called EPS (it made her become rigid and lean) They

> decided to try a different antipsychotic med only this gave her EPS

> again. They tried another and in the mean time she stopped thinking

> people were stealing her things and moved on to seeing people that

> were not really there. They have now diagnosed her with LBD. She has

> gotten really bad with the physcosis and they have tried all of the

> anitipsychotic meds about 5 or 6 of them and they all cause the same

> side affect. Apparently people with LBD are very sensitive to

> anitipsychotic meds. They tried another cocktail of meds that did not

> include antipsychotics but that worked only for a short time before

> the psychosis became bad. She is now in a behavorial center so she she

> can be monitored every day by a psychiatrist but he said the only

> thing left is ECT electro shock therepy but she has to be approved by

> another doctor to see if she is even a canidate for it. I keep

> thinking this is so hard to figure out and deal with but whats even

> worse is my poor mom having to deal with the pshycosis and side

> affects from the meds, its horrible!!!

> I have read about ECT and it doesnt seem so bad if that is all that is

> left but I could not find anything about using it on LBD. Has anyone

> had to resort to this option on a LO if so what was the outcome?

> Any info and or support would be greatly appreciated. Also I did not

> mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> as well so I have alot on my plate and becoming very stressed.

> Thank you in advance for any replys!

>

>

[Guest guest]

Thank you all for replying to my post. I am going to try and respond to everyone

in this post by giving more information on my mother. By the way her name is

.

I wrote all of the medicines she has taken in caps to try and help out. Also I

mention at the bottom that she didn't have a UTI or any other infections blood

and urtine tests could find.

Originally she was put on ARICEPT for the dementia and maybe 2 years later they

added NAMENDA to it. She has a very hard time with following directions, as if

she does not know what you are telling her to do. She also struggles with

telling you what she is thinking. She will start to say something and its gone.

She needed help with dressing, bathing, grooming, she could not prepare any

food, couldn't work a microwave, phone or tv. She could however walk just fine,

go to the bathroom, and feed herself. She started becoming very paranoid and

didn't want to leave her room because she was scared someone was going to steal

her things. She was very attached to petty things like ink pens, rubber bands,

and pennies. None the less they were hers. My oldest son was the main suspect

and she would go in his room in the middle of the night and look around in the

dark, quiet freighting for him. We were seeing a neurologist and she decided to

try a low dose of SERIQUEL. This seemed to ease her paranoia for a while but we

ended up having to increase her dose because it stopped working. I told myself

that I would not put her in a nursing home until either she didn't know the

difference or she was not able to go to the bathroom by her self. Well in

January of 2010 she started having problems getting to the bathroom in time so I

knew what I had to do. I found a wonderful place for her and I love everyone

there and so did she for a while.

So when she went to the nursing home she was taking ARICEPT, NAMENDA and

SERIQUEL. After about 5 months the paranoia came back and she thought the other

residents were stealing from her. She even thought they were taking the buttons

off her sweaters They started giving her LORAZEPAM for anxiety as needed.

This didn't seem to be working and the took her off SERIQUEL and tried

RISPERDOL. This only lasted a day or so because of the EPS that it caused. They

let that clear out of her system and tried GEODON. Again same reaction. They let

that clear and tried ABILIFY. Same thing. After the reactions she was getting

and the symptoms she has they decided it was LBD. The then tried DEPAKOTE and

CELEXA. DEPAKOTE because it can be a mood stabilizer and the CELEXA for the

depressions she was having. Using these two together worked. I was so happy and

so was she no more paranoia She still had all of her other symptoms but at

least she was happy. I was even able to bring her home for Thanksgiving and she

had a good time.

A few weeks before Christmas she talked about a friend she had met, it was a

lady and she was very nice. She said she made her feel safe. I asked if I could

meet her and she said probably not. I asked some other questions about this lady

and couldn't get much out of her. I figured out that this lady was not real. But

that was ok because she made her happy and said she said the lady was like an

angle so I played along. Two days later things turned for the worst. The angle

was gone and now there were vampires, werewolves, and gargoyles. I went to visit

on Christmas and it was awful. Almost like she was living in another world she

was scared and it reminded me of what I would think hell would be like seeing it

through my moms eyes. She was not acting out or causing problems she just sits

there and rambles about something I don't know what and makes possessed noises.

It is really hard to explain. The week following Christmas she added men

stealing babies to the mix but couldn't tell me why these men were taking the

babies. She just kept repeating it and telling me to be careful of my kids. She

then started to refuse to eat, drink, or take her meds (ARICEPT, NAMENDA,

DEPAKOTE, CELEXA) and she became very combative when the CNAs would try to get

her to go to the bathroom or take a shower. They tried SERIQUEL again but it

made no difference. They decided she needed to go to a local behavioral center

so she could be seen by a psychiatrist on a daily basis. The one at the nursing

home only came once a week.

In order to got the behavioral center she had to go to the hospital to get

medically cleared. She ended up staying there a week during new years and she

was fine. They tested her blood for everything and her urine as well. No UTI no

other problems either. She has always been very healthy. They did end up putting

in a Foley because she had urinary retention?? While she was in the hospital

they were giving her ZYPREXA, BENEDRYL(to counter act the affects from ZYPREXA)

and ATIVAN By the 5th day I noticed the lean (rigid) and told them to stop the

ZYPREXA because it was causing the EPS. They did as I requested. Keep in mind my

mother was walking when she went to the hospital but sometime while she was

there she seemed to become cripple. She was so stiff she could no longer walk

and didn't have control of her hand in order to feed herself. She was still

having hallucinations, delusions, and combativeness while she was in the

hospital, that is while she was awake the meds made her pretty sleepy.

Once at the behavioral center they began giving her COGENTIN to try and loosen

her up. They also took her off of everything except the ARICEPT. So she really

became psychotic. Eventually she was sitting up right and they began PT to get

her walking again. Good news she is now walking with assistance. She still can

not feed herself though. When talking to me she get a few real words out and

then begins rambling in somewhat of baby talk. She still mentions the men

stealing babies, vampires, werewolves, and gargoyles. She rambles the whole hour

that I am allowed to visit, its none stop. If I try to interrupt her she gets

made and tells me to shut up. I cant get into her world because I have not idea

what she is talking about and she is not capable of telling me. I just know she

is very scared and unhappy. Once they got rid of the EPS with the COGENTIN we

decided to try the last antipsychotic they felt would help. CLOZARIL, it is

supposed to be the one least likely to cause EPS however it could cause a lot

of other bad side affects. This is why they waited to try it last. 5 days into

taking CLOZARIL the EPS started again but I did notice the psychotic behavior

had improved slightly. The started her on a low dose of the CLOZARIL so they

couldn't try lowering it so they took her off of it.

This is where the ECT is coming in. She isn't causing any problems and is eating

again however I can't stand to see her living in the scary world she lives in. I

asked what other options there was since she can not take meds to help. They

said there was ECT and told me about it. They said to do some research about it

and let them know if that was something I wanted to try. They did not try and

push it on me. The psychiatrist said if I decide to go that route she would need

to then be evaluated by the doc that performs the procedure to determine if she

is a candidate for it. She may not be due to the dementia but I won't know until

I say go forward with it.

I don't want her to be scared anymore it is heartbreaking. Knowing that there is

a possible way to help her and not trying it is hard for me. But making her

worse would be devastating as well. This is why I am torn.

As for me all of our family lives out of state so it is pretty much just me

dealing with this. I have some support from my brother and aunt but it is via

phone and it is pretty much me just filling them in on how she is doing. I have

my boyfriend who helps with the kids, thank god. And a couple of good friends I

can vent to but they have know clue what its like.

Note: As I was writing this I looked up LORAZEPAM for the spelling and realized

it is ATIVAN. My heart dropped since reading some of your comments of it

negative affects on LBD. Maybe this is why things got so bad, she's been taking

it the whole time (as needed) and full time in the hospital stay recently.

Thank you all again for taking the time to read this I know it was a lot.

[Guest guest]

Thank you all for replying to my post. I am going to try and respond to everyone

in this post by giving more information on my mother. By the way her name is

.

I wrote all of the medicines she has taken in caps to try and help out. Also I

mention at the bottom that she didn't have a UTI or any other infections blood

and urtine tests could find.

Originally she was put on ARICEPT for the dementia and maybe 2 years later they

added NAMENDA to it. She has a very hard time with following directions, as if

she does not know what you are telling her to do. She also struggles with

telling you what she is thinking. She will start to say something and its gone.

She needed help with dressing, bathing, grooming, she could not prepare any

food, couldn't work a microwave, phone or tv. She could however walk just fine,

go to the bathroom, and feed herself. She started becoming very paranoid and

didn't want to leave her room because she was scared someone was going to steal

her things. She was very attached to petty things like ink pens, rubber bands,

and pennies. None the less they were hers. My oldest son was the main suspect

and she would go in his room in the middle of the night and look around in the

dark, quiet freighting for him. We were seeing a neurologist and she decided to

try a low dose of SERIQUEL. This seemed to ease her paranoia for a while but we

ended up having to increase her dose because it stopped working. I told myself

that I would not put her in a nursing home until either she didn't know the

difference or she was not able to go to the bathroom by her self. Well in

January of 2010 she started having problems getting to the bathroom in time so I

knew what I had to do. I found a wonderful place for her and I love everyone

there and so did she for a while.

So when she went to the nursing home she was taking ARICEPT, NAMENDA and

SERIQUEL. After about 5 months the paranoia came back and she thought the other

residents were stealing from her. She even thought they were taking the buttons

off her sweaters They started giving her LORAZEPAM for anxiety as needed.

This didn't seem to be working and the took her off SERIQUEL and tried

RISPERDOL. This only lasted a day or so because of the EPS that it caused. They

let that clear out of her system and tried GEODON. Again same reaction. They let

that clear and tried ABILIFY. Same thing. After the reactions she was getting

and the symptoms she has they decided it was LBD. The then tried DEPAKOTE and

CELEXA. DEPAKOTE because it can be a mood stabilizer and the CELEXA for the

depressions she was having. Using these two together worked. I was so happy and

so was she no more paranoia She still had all of her other symptoms but at

least she was happy. I was even able to bring her home for Thanksgiving and she

had a good time.

A few weeks before Christmas she talked about a friend she had met, it was a

lady and she was very nice. She said she made her feel safe. I asked if I could

meet her and she said probably not. I asked some other questions about this lady

and couldn't get much out of her. I figured out that this lady was not real. But

that was ok because she made her happy and said she said the lady was like an

angle so I played along. Two days later things turned for the worst. The angle

was gone and now there were vampires, werewolves, and gargoyles. I went to visit

on Christmas and it was awful. Almost like she was living in another world she

was scared and it reminded me of what I would think hell would be like seeing it

through my moms eyes. She was not acting out or causing problems she just sits

there and rambles about something I don't know what and makes possessed noises.

It is really hard to explain. The week following Christmas she added men

stealing babies to the mix but couldn't tell me why these men were taking the

babies. She just kept repeating it and telling me to be careful of my kids. She

then started to refuse to eat, drink, or take her meds (ARICEPT, NAMENDA,

DEPAKOTE, CELEXA) and she became very combative when the CNAs would try to get

her to go to the bathroom or take a shower. They tried SERIQUEL again but it

made no difference. They decided she needed to go to a local behavioral center

so she could be seen by a psychiatrist on a daily basis. The one at the nursing

home only came once a week.

In order to got the behavioral center she had to go to the hospital to get

medically cleared. She ended up staying there a week during new years and she

was fine. They tested her blood for everything and her urine as well. No UTI no

other problems either. She has always been very healthy. They did end up putting

in a Foley because she had urinary retention?? While she was in the hospital

they were giving her ZYPREXA, BENEDRYL(to counter act the affects from ZYPREXA)

and ATIVAN By the 5th day I noticed the lean (rigid) and told them to stop the

ZYPREXA because it was causing the EPS. They did as I requested. Keep in mind my

mother was walking when she went to the hospital but sometime while she was

there she seemed to become cripple. She was so stiff she could no longer walk

and didn't have control of her hand in order to feed herself. She was still

having hallucinations, delusions, and combativeness while she was in the

hospital, that is while she was awake the meds made her pretty sleepy.

Once at the behavioral center they began giving her COGENTIN to try and loosen

her up. They also took her off of everything except the ARICEPT. So she really

became psychotic. Eventually she was sitting up right and they began PT to get

her walking again. Good news she is now walking with assistance. She still can

not feed herself though. When talking to me she get a few real words out and

then begins rambling in somewhat of baby talk. She still mentions the men

stealing babies, vampires, werewolves, and gargoyles. She rambles the whole hour

that I am allowed to visit, its none stop. If I try to interrupt her she gets

made and tells me to shut up. I cant get into her world because I have not idea

what she is talking about and she is not capable of telling me. I just know she

is very scared and unhappy. Once they got rid of the EPS with the COGENTIN we

decided to try the last antipsychotic they felt would help. CLOZARIL, it is

supposed to be the one least likely to cause EPS however it could cause a lot

of other bad side affects. This is why they waited to try it last. 5 days into

taking CLOZARIL the EPS started again but I did notice the psychotic behavior

had improved slightly. The started her on a low dose of the CLOZARIL so they

couldn't try lowering it so they took her off of it.

This is where the ECT is coming in. She isn't causing any problems and is eating

again however I can't stand to see her living in the scary world she lives in. I

asked what other options there was since she can not take meds to help. They

said there was ECT and told me about it. They said to do some research about it

and let them know if that was something I wanted to try. They did not try and

push it on me. The psychiatrist said if I decide to go that route she would need

to then be evaluated by the doc that performs the procedure to determine if she

is a candidate for it. She may not be due to the dementia but I won't know until

I say go forward with it.

I don't want her to be scared anymore it is heartbreaking. Knowing that there is

a possible way to help her and not trying it is hard for me. But making her

worse would be devastating as well. This is why I am torn.

As for me all of our family lives out of state so it is pretty much just me

dealing with this. I have some support from my brother and aunt but it is via

phone and it is pretty much me just filling them in on how she is doing. I have

my boyfriend who helps with the kids, thank god. And a couple of good friends I

can vent to but they have know clue what its like.

Note: As I was writing this I looked up LORAZEPAM for the spelling and realized

it is ATIVAN. My heart dropped since reading some of your comments of it

negative affects on LBD. Maybe this is why things got so bad, she's been taking

it the whole time (as needed) and full time in the hospital stay recently.

Thank you all again for taking the time to read this I know it was a lot.

[Guest guest]

Thank you all for replying to my post. I am going to try and respond to everyone

in this post by giving more information on my mother. By the way her name is

.

I wrote all of the medicines she has taken in caps to try and help out. Also I

mention at the bottom that she didn't have a UTI or any other infections blood

and urtine tests could find.

Originally she was put on ARICEPT for the dementia and maybe 2 years later they

added NAMENDA to it. She has a very hard time with following directions, as if

she does not know what you are telling her to do. She also struggles with

telling you what she is thinking. She will start to say something and its gone.

She needed help with dressing, bathing, grooming, she could not prepare any

food, couldn't work a microwave, phone or tv. She could however walk just fine,

go to the bathroom, and feed herself. She started becoming very paranoid and

didn't want to leave her room because she was scared someone was going to steal

her things. She was very attached to petty things like ink pens, rubber bands,

and pennies. None the less they were hers. My oldest son was the main suspect

and she would go in his room in the middle of the night and look around in the

dark, quiet freighting for him. We were seeing a neurologist and she decided to

try a low dose of SERIQUEL. This seemed to ease her paranoia for a while but we

ended up having to increase her dose because it stopped working. I told myself

that I would not put her in a nursing home until either she didn't know the

difference or she was not able to go to the bathroom by her self. Well in

January of 2010 she started having problems getting to the bathroom in time so I

knew what I had to do. I found a wonderful place for her and I love everyone

there and so did she for a while.

So when she went to the nursing home she was taking ARICEPT, NAMENDA and

SERIQUEL. After about 5 months the paranoia came back and she thought the other

residents were stealing from her. She even thought they were taking the buttons

off her sweaters They started giving her LORAZEPAM for anxiety as needed.

This didn't seem to be working and the took her off SERIQUEL and tried

RISPERDOL. This only lasted a day or so because of the EPS that it caused. They

let that clear out of her system and tried GEODON. Again same reaction. They let

that clear and tried ABILIFY. Same thing. After the reactions she was getting

and the symptoms she has they decided it was LBD. The then tried DEPAKOTE and

CELEXA. DEPAKOTE because it can be a mood stabilizer and the CELEXA for the

depressions she was having. Using these two together worked. I was so happy and

so was she no more paranoia She still had all of her other symptoms but at

least she was happy. I was even able to bring her home for Thanksgiving and she

had a good time.

A few weeks before Christmas she talked about a friend she had met, it was a

lady and she was very nice. She said she made her feel safe. I asked if I could

meet her and she said probably not. I asked some other questions about this lady

and couldn't get much out of her. I figured out that this lady was not real. But

that was ok because she made her happy and said she said the lady was like an

angle so I played along. Two days later things turned for the worst. The angle

was gone and now there were vampires, werewolves, and gargoyles. I went to visit

on Christmas and it was awful. Almost like she was living in another world she

was scared and it reminded me of what I would think hell would be like seeing it

through my moms eyes. She was not acting out or causing problems she just sits

there and rambles about something I don't know what and makes possessed noises.

It is really hard to explain. The week following Christmas she added men

stealing babies to the mix but couldn't tell me why these men were taking the

babies. She just kept repeating it and telling me to be careful of my kids. She

then started to refuse to eat, drink, or take her meds (ARICEPT, NAMENDA,

DEPAKOTE, CELEXA) and she became very combative when the CNAs would try to get

her to go to the bathroom or take a shower. They tried SERIQUEL again but it

made no difference. They decided she needed to go to a local behavioral center

so she could be seen by a psychiatrist on a daily basis. The one at the nursing

home only came once a week.

In order to got the behavioral center she had to go to the hospital to get

medically cleared. She ended up staying there a week during new years and she

was fine. They tested her blood for everything and her urine as well. No UTI no

other problems either. She has always been very healthy. They did end up putting

in a Foley because she had urinary retention?? While she was in the hospital

they were giving her ZYPREXA, BENEDRYL(to counter act the affects from ZYPREXA)

and ATIVAN By the 5th day I noticed the lean (rigid) and told them to stop the

ZYPREXA because it was causing the EPS. They did as I requested. Keep in mind my

mother was walking when she went to the hospital but sometime while she was

there she seemed to become cripple. She was so stiff she could no longer walk

and didn't have control of her hand in order to feed herself. She was still

having hallucinations, delusions, and combativeness while she was in the

hospital, that is while she was awake the meds made her pretty sleepy.

Once at the behavioral center they began giving her COGENTIN to try and loosen

her up. They also took her off of everything except the ARICEPT. So she really

became psychotic. Eventually she was sitting up right and they began PT to get

her walking again. Good news she is now walking with assistance. She still can

not feed herself though. When talking to me she get a few real words out and

then begins rambling in somewhat of baby talk. She still mentions the men

stealing babies, vampires, werewolves, and gargoyles. She rambles the whole hour

that I am allowed to visit, its none stop. If I try to interrupt her she gets

made and tells me to shut up. I cant get into her world because I have not idea

what she is talking about and she is not capable of telling me. I just know she

is very scared and unhappy. Once they got rid of the EPS with the COGENTIN we

decided to try the last antipsychotic they felt would help. CLOZARIL, it is

supposed to be the one least likely to cause EPS however it could cause a lot

of other bad side affects. This is why they waited to try it last. 5 days into

taking CLOZARIL the EPS started again but I did notice the psychotic behavior

had improved slightly. The started her on a low dose of the CLOZARIL so they

couldn't try lowering it so they took her off of it.

This is where the ECT is coming in. She isn't causing any problems and is eating

again however I can't stand to see her living in the scary world she lives in. I

asked what other options there was since she can not take meds to help. They

said there was ECT and told me about it. They said to do some research about it

and let them know if that was something I wanted to try. They did not try and

push it on me. The psychiatrist said if I decide to go that route she would need

to then be evaluated by the doc that performs the procedure to determine if she

is a candidate for it. She may not be due to the dementia but I won't know until

I say go forward with it.

I don't want her to be scared anymore it is heartbreaking. Knowing that there is

a possible way to help her and not trying it is hard for me. But making her

worse would be devastating as well. This is why I am torn.

As for me all of our family lives out of state so it is pretty much just me

dealing with this. I have some support from my brother and aunt but it is via

phone and it is pretty much me just filling them in on how she is doing. I have

my boyfriend who helps with the kids, thank god. And a couple of good friends I

can vent to but they have know clue what its like.

Note: As I was writing this I looked up LORAZEPAM for the spelling and realized

it is ATIVAN. My heart dropped since reading some of your comments of it

negative affects on LBD. Maybe this is why things got so bad, she's been taking

it the whole time (as needed) and full time in the hospital stay recently.

Thank you all again for taking the time to read this I know it was a lot.

[Guest guest]

Hi Barb, thank you for sharing this with me. It sounds almost exactly what I am

going through. I cried as I read your message. My thoughts are the same just

take her off everything, no more medicine. She was always against taking

medicine anyway. She always referred to medicine as plastic and didn't want it.

But that was the only way I knew to try and make her better. I am so happy to

her that you mother is doing better and I hope that it continues. I pray all the

time but sometimes I find myself not knowing what to pray for. I hope that God

blesses me with the same MIRACLE as he has blessed you with.

What kind of test did they do to confirm LBD?

>

> > Hello,

> > My name is Sherry and I am 32. I have never joined a support group or

> > any online chat rooms so I hope that I am doing this correctly. I hope

> > that someone can help me with the situation my mother is in and find

> > some support as well.

> > This is a little long but here is some of my story.

> > I am the guardian of my mother who just turned 66. She was diagnosed

> > with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> > pretty bad then since she had not taken any meds for it so she had it

> > well before 2008. Her husband decided to divorce her when we found out

> > her diagnosis so that is why I became her guardian and soon after her

> > care giver as well. Its been a loooonnnng road and I finally had to

> > put her in a nursing facility in the memory care unit. She has been

> > there since March of 2011 and at first she loved it. She has struggled

> > with paranoia (people stealing her things) since living with me and

> > had been taking seroquel. The paranoia seemed to go away when she got

> > to nursing home but it came back when she got used to being there.

> > Soon the seroquel stopped working and seemed to give her a side affect

> > the psychiatrist called EPS (it made her become rigid and lean) They

> > decided to try a different antipsychotic med only this gave her EPS

> > again. They tried another and in the mean time she stopped thinking

> > people were stealing her things and moved on to seeing people that

> > were not really there. They have now diagnosed her with LBD. She has

> > gotten really bad with the physcosis and they have tried all of the

> > anitipsychotic meds about 5 or 6 of them and they all cause the same

> > side affect. Apparently people with LBD are very sensitive to

> > anitipsychotic meds. They tried another cocktail of meds that did not

> > include antipsychotics but that worked only for a short time before

> > the psychosis became bad. She is now in a behavorial center so she she

> > can be monitored every day by a psychiatrist but he said the only

> > thing left is ECT electro shock therepy but she has to be approved by

> > another doctor to see if she is even a canidate for it. I keep

> > thinking this is so hard to figure out and deal with but whats even

> > worse is my poor mom having to deal with the pshycosis and side

> > affects from the meds, its horrible!!!

> > I have read about ECT and it doesnt seem so bad if that is all that is

> > left but I could not find anything about using it on LBD. Has anyone

> > had to resort to this option on a LO if so what was the outcome?

> > Any info and or support would be greatly appreciated. Also I did not

> > mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> > as well so I have alot on my plate and becoming very stressed.

> > Thank you in advance for any replys!

> >

> >

>

>

[Guest guest]

Hi Barb, thank you for sharing this with me. It sounds almost exactly what I am

going through. I cried as I read your message. My thoughts are the same just

take her off everything, no more medicine. She was always against taking

medicine anyway. She always referred to medicine as plastic and didn't want it.

But that was the only way I knew to try and make her better. I am so happy to

her that you mother is doing better and I hope that it continues. I pray all the

time but sometimes I find myself not knowing what to pray for. I hope that God

blesses me with the same MIRACLE as he has blessed you with.

What kind of test did they do to confirm LBD?

>

> > Hello,

> > My name is Sherry and I am 32. I have never joined a support group or

> > any online chat rooms so I hope that I am doing this correctly. I hope

> > that someone can help me with the situation my mother is in and find

> > some support as well.

> > This is a little long but here is some of my story.

> > I am the guardian of my mother who just turned 66. She was diagnosed

> > with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> > pretty bad then since she had not taken any meds for it so she had it

> > well before 2008. Her husband decided to divorce her when we found out

> > her diagnosis so that is why I became her guardian and soon after her

> > care giver as well. Its been a loooonnnng road and I finally had to

> > put her in a nursing facility in the memory care unit. She has been

> > there since March of 2011 and at first she loved it. She has struggled

> > with paranoia (people stealing her things) since living with me and

> > had been taking seroquel. The paranoia seemed to go away when she got

> > to nursing home but it came back when she got used to being there.

> > Soon the seroquel stopped working and seemed to give her a side affect

> > the psychiatrist called EPS (it made her become rigid and lean) They

> > decided to try a different antipsychotic med only this gave her EPS

> > again. They tried another and in the mean time she stopped thinking

> > people were stealing her things and moved on to seeing people that

> > were not really there. They have now diagnosed her with LBD. She has

> > gotten really bad with the physcosis and they have tried all of the

> > anitipsychotic meds about 5 or 6 of them and they all cause the same

> > side affect. Apparently people with LBD are very sensitive to

> > anitipsychotic meds. They tried another cocktail of meds that did not

> > include antipsychotics but that worked only for a short time before

> > the psychosis became bad. She is now in a behavorial center so she she

> > can be monitored every day by a psychiatrist but he said the only

> > thing left is ECT electro shock therepy but she has to be approved by

> > another doctor to see if she is even a canidate for it. I keep

> > thinking this is so hard to figure out and deal with but whats even

> > worse is my poor mom having to deal with the pshycosis and side

> > affects from the meds, its horrible!!!

> > I have read about ECT and it doesnt seem so bad if that is all that is

> > left but I could not find anything about using it on LBD. Has anyone

> > had to resort to this option on a LO if so what was the outcome?

> > Any info and or support would be greatly appreciated. Also I did not

> > mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> > as well so I have alot on my plate and becoming very stressed.

> > Thank you in advance for any replys!

> >

> >

>

>

[Guest guest]

Hi Barb, thank you for sharing this with me. It sounds almost exactly what I am

going through. I cried as I read your message. My thoughts are the same just

take her off everything, no more medicine. She was always against taking

medicine anyway. She always referred to medicine as plastic and didn't want it.

But that was the only way I knew to try and make her better. I am so happy to

her that you mother is doing better and I hope that it continues. I pray all the

time but sometimes I find myself not knowing what to pray for. I hope that God

blesses me with the same MIRACLE as he has blessed you with.

What kind of test did they do to confirm LBD?

>

> > Hello,

> > My name is Sherry and I am 32. I have never joined a support group or

> > any online chat rooms so I hope that I am doing this correctly. I hope

> > that someone can help me with the situation my mother is in and find

> > some support as well.

> > This is a little long but here is some of my story.

> > I am the guardian of my mother who just turned 66. She was diagnosed

> > with Frontotemporal dementia (FTD) in 2008 but the symptoms were

> > pretty bad then since she had not taken any meds for it so she had it

> > well before 2008. Her husband decided to divorce her when we found out

> > her diagnosis so that is why I became her guardian and soon after her

> > care giver as well. Its been a loooonnnng road and I finally had to

> > put her in a nursing facility in the memory care unit. She has been

> > there since March of 2011 and at first she loved it. She has struggled

> > with paranoia (people stealing her things) since living with me and

> > had been taking seroquel. The paranoia seemed to go away when she got

> > to nursing home but it came back when she got used to being there.

> > Soon the seroquel stopped working and seemed to give her a side affect

> > the psychiatrist called EPS (it made her become rigid and lean) They

> > decided to try a different antipsychotic med only this gave her EPS

> > again. They tried another and in the mean time she stopped thinking

> > people were stealing her things and moved on to seeing people that

> > were not really there. They have now diagnosed her with LBD. She has

> > gotten really bad with the physcosis and they have tried all of the

> > anitipsychotic meds about 5 or 6 of them and they all cause the same

> > side affect. Apparently people with LBD are very sensitive to

> > anitipsychotic meds. They tried another cocktail of meds that did not

> > include antipsychotics but that worked only for a short time before

> > the psychosis became bad. She is now in a behavorial center so she she

> > can be monitored every day by a psychiatrist but he said the only

> > thing left is ECT electro shock therepy but she has to be approved by

> > another doctor to see if she is even a canidate for it. I keep

> > thinking this is so hard to figure out and deal with but whats even

> > worse is my poor mom having to deal with the pshycosis and side

> > affects from the meds, its horrible!!!

> > I have read about ECT and it doesnt seem so bad if that is all that is

> > left but I could not find anything about using it on LBD. Has anyone

> > had to resort to this option on a LO if so what was the outcome?

> > Any info and or support would be greatly appreciated. Also I did not

> > mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

> > as well so I have alot on my plate and becoming very stressed.

> > Thank you in advance for any replys!

> >

> >

>

>

[Guest guest]

Hi Sherry

I am really sorry to read all the trauma you have been having with your

mother - though the last post from you mentions that you have now discovered

she has been on Ativan. I do hope that you are able to stop this medication

and see if this brings about a positive effect for your mother.

You asked what test exists to confirm LBD. I am sending you, via your email

address, an article by Dr Boeve which gives a very clear indication of how

LBD is diagnosed clinically. Although this is available in the group files,

I thought it would be easier for me to send it directly, as it isn't always

easy to find what you want in the files when you are already stretched for

time with all your family commitments.

As you learn more about LBD, you will discover that the only positive

confirmation of LBD is available through brain tissue analysis after death.

This is why many of us in the group recommend that you think seriously about

arranging for brain donation. This not only gives you the confirmation of

the diagnosis, but also is a very positive contribution to the research into

the causes and cures of LBD.

If you are living in the US, then Robin Riddle, who is a member of this

group, can give you excellent advice about how to arrange for brain

donations.

Warmest wishes

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse Lewy Body Disease

<http://groups.yahoo.com/group/LBDcaregivers/message/100064;_ylc=X3oDMTJzMG1

wdTk3BF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzE

wMDA2NARzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMzI3NDgyMDI4> Re: New member my

mother has LBD and Im struggling with decisions

Posted by: " yheryany1 " mssherry239@...

<mailto:mssherry239@...?Subject=%20Re%3A%20New%20member%20my%20mother%

20has%20LBD%20and%20Im%20struggling%20with%20decisions> yheryany1

<http://profiles.yahoo.com/yheryany1>

Tue Jan 24, 2012 10:32 pm (PST)

Hi Barb, thank you for sharing this with me. It sounds almost exactly what I

am going through. I cried as I read your message. My thoughts are the same

just take her off everything, no more medicine. She was always against

taking medicine anyway. She always referred to medicine as plastic and

didn't want it. But that was the only way I knew to try and make her better.

I am so happy to her that you mother is doing better and I hope that it

continues. I pray all the time but sometimes I find myself not knowing what

to pray for. I hope that God blesses me with the same MIRACLE as he has

blessed you with.

What kind of test did they do to confirm LBD?

[Guest guest]

Hi Sherry

I am really sorry to read all the trauma you have been having with your

mother - though the last post from you mentions that you have now discovered

she has been on Ativan. I do hope that you are able to stop this medication

and see if this brings about a positive effect for your mother.

You asked what test exists to confirm LBD. I am sending you, via your email

address, an article by Dr Boeve which gives a very clear indication of how

LBD is diagnosed clinically. Although this is available in the group files,

I thought it would be easier for me to send it directly, as it isn't always

easy to find what you want in the files when you are already stretched for

time with all your family commitments.

As you learn more about LBD, you will discover that the only positive

confirmation of LBD is available through brain tissue analysis after death.

This is why many of us in the group recommend that you think seriously about

arranging for brain donation. This not only gives you the confirmation of

the diagnosis, but also is a very positive contribution to the research into

the causes and cures of LBD.

If you are living in the US, then Robin Riddle, who is a member of this

group, can give you excellent advice about how to arrange for brain

donations.

Warmest wishes

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse Lewy Body Disease

<http://groups.yahoo.com/group/LBDcaregivers/message/100064;_ylc=X3oDMTJzMG1

wdTk3BF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzE

wMDA2NARzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMzI3NDgyMDI4> Re: New member my

mother has LBD and Im struggling with decisions

Posted by: " yheryany1 " mssherry239@...

<mailto:mssherry239@...?Subject=%20Re%3A%20New%20member%20my%20mother%

20has%20LBD%20and%20Im%20struggling%20with%20decisions> yheryany1

<http://profiles.yahoo.com/yheryany1>

Tue Jan 24, 2012 10:32 pm (PST)

Hi Barb, thank you for sharing this with me. It sounds almost exactly what I

am going through. I cried as I read your message. My thoughts are the same

just take her off everything, no more medicine. She was always against

taking medicine anyway. She always referred to medicine as plastic and

didn't want it. But that was the only way I knew to try and make her better.

I am so happy to her that you mother is doing better and I hope that it

continues. I pray all the time but sometimes I find myself not knowing what

to pray for. I hope that God blesses me with the same MIRACLE as he has

blessed you with.

What kind of test did they do to confirm LBD?

[Guest guest]

Hi Sherry

I am really sorry to read all the trauma you have been having with your

mother - though the last post from you mentions that you have now discovered

she has been on Ativan. I do hope that you are able to stop this medication

and see if this brings about a positive effect for your mother.

You asked what test exists to confirm LBD. I am sending you, via your email

address, an article by Dr Boeve which gives a very clear indication of how

LBD is diagnosed clinically. Although this is available in the group files,

I thought it would be easier for me to send it directly, as it isn't always

easy to find what you want in the files when you are already stretched for

time with all your family commitments.

As you learn more about LBD, you will discover that the only positive

confirmation of LBD is available through brain tissue analysis after death.

This is why many of us in the group recommend that you think seriously about

arranging for brain donation. This not only gives you the confirmation of

the diagnosis, but also is a very positive contribution to the research into

the causes and cures of LBD.

If you are living in the US, then Robin Riddle, who is a member of this

group, can give you excellent advice about how to arrange for brain

donations.

Warmest wishes

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse Lewy Body Disease

<http://groups.yahoo.com/group/LBDcaregivers/message/100064;_ylc=X3oDMTJzMG1

wdTk3BF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzE

wMDA2NARzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMzI3NDgyMDI4> Re: New member my

mother has LBD and Im struggling with decisions

Posted by: " yheryany1 " mssherry239@...

<mailto:mssherry239@...?Subject=%20Re%3A%20New%20member%20my%20mother%

20has%20LBD%20and%20Im%20struggling%20with%20decisions> yheryany1

<http://profiles.yahoo.com/yheryany1>

Tue Jan 24, 2012 10:32 pm (PST)

Hi Barb, thank you for sharing this with me. It sounds almost exactly what I

am going through. I cried as I read your message. My thoughts are the same

just take her off everything, no more medicine. She was always against

taking medicine anyway. She always referred to medicine as plastic and

didn't want it. But that was the only way I knew to try and make her better.

I am so happy to her that you mother is doing better and I hope that it

continues. I pray all the time but sometimes I find myself not knowing what

to pray for. I hope that God blesses me with the same MIRACLE as he has

blessed you with.

What kind of test did they do to confirm LBD?