Re: update on my mom/ lying

[Guest guest]

I think Namenda might have been responsible for my

husband's urinary problems but don't know for sure.

That is one of the side effects. One of the NH gave

him the 20 mg dose without working up to it, and he

developed a bad UTI where the urine was very dark

gold-colored, and he could not void on his own. Had a

catheter for a few weeks, and now is going on his own,

but has some incontinence too.

--- Dena LEAVITT wrote:

> Hi Everyone

>

> I have just finished reading many days worth of

> posts.

> I have been away from my computer for quite a while

> and just wanted to bring you up to date on my mom.

>

> My Mom was moved to the NH two weeks ago today. She

> is

> actually eating pretty well now. They are giving her

> puree foods which are really hard for me to stomach,

> yet I have been feeding her as much as she will eat.

> She still does not like to drink much which is a

> problem.

>

> The Hospice nurse believes she may have a UTI, but

> no

> test was done. She is however, being treated for an

> infection. She has a catheter now also.

>

> I have read all the posts about lying and I started

> out trying to always tell the truth and be honest

> with

> my mom. However, it would upset her and she would

> cry

> and get agitated, so I began to lie to her. But I

> soon

> realized I was not lying to her, just going along

> with

> her hallucination. She would ask me how old the

> children were, when no one was home, but myself and

> her and I would say 5 and 7. That would satisfy her.

> It was so much easier for us both and I got over the

> fact that I felt like I was lying to my mother and

> she

> would find out and be mad at me. She never knew and

> it

> made life much, much easier for us all.

>

> Now, I just wish I had one of those days back. My

> mother no longer responds to 98% of what you say to

> her. She once in a blue moon will say Hello, if you

> say hello first, but mostly she does not even make

> eye

> contact with me. I have not noticed others saying

> that

> this is what has happened to their LO's. It makes me

> think that being on the Risperdal for months has

> just

> destroyed her brain. She is practically a vegetable

> now. Her only response is to pain. I sit at the NH

> for

> hours and get nothing from her all day long. I

> battle

> in my own head about not stopping the medications

> sooner. What do the rest of you think? Could this be

> medication or is it just the progression of the

> insidious disease. She is in the forever end stages

> of

> LBD. She started with cognitive problems, then on to

> hallucinations and finally PD symptoms. She took

> Aricept for 18 months. In May of 2005 she began

> Risperdal, Clonazapam and Namenda and Prozac. She

> continued on them all until Jan 2006. As I

> complained

> about the Risperdal and asked repeatedly for the

> Seroquel I was told that the Risperdal was working

> so

> why change it. I went along with that Philosophy.

> now

> I think I did the wrong thing. The Hospice Dr. will

> not use Seroquel now as it is too expensive and

> Medicare will not pay for it. I don't think it would

> do any good anyway now. She is just gone. Her body

> lives on and her mind has just evaporated. It is the

> saddest thing to watch. She was very intelligent.

> She

> had an almost photographic memory. My son has

> inherited that ability now.

>

> If anyone has a comment on what they think I would

> love to here from you.

>

> Dena

>

> Mother (83) dx April 2005 with LBD

>

> __________________________________________________

>

[Guest guest]

Dena,

If you saw my posts, my mother was reaching the stage your mother

sounds like she is in. They put her in Hospice also and had all her

meds increased over a while. She turned into a zombie, leaning half

out of the chair or in bed all the time, with her eyes shut,

couldn't carry on any conversation, etc, and I finally had them

adjust all the meds to the lowest dose possible and stop some of

them. She has changed so much since that occurred and is the best

she's been in 2 or more years.

I would not want to suggest that this could happen to everyone - I

feel very blessed - and they might be in totally different stages of

the disease. However, I just feel that so many problems are caused

by the drugs they are using to try to help, and definitely when

there are many and the combos might not be good, lots of

interactions and lots of adverse symptoms and lots of wierd things

that happen with LBD and PD and the neuroleptic syndrome too.

At one time they did have my mom on Prozac and two anti-anxiety

drugs, one being Clonopin, and she turned into a zombie then too, so

we stopped all those but the Prozac and she turned around, that was

several years ago. It is just so hard to tell what the meds might

do. I also questioned the doctor that they also need to know that

their kidney and liver function is good, because if not, they are

not able to metabolize the drugs, so they are just accumulating to

overdose level in their system. I made them check her blood too, to

see if that were true. She was okay in that area, so I know the

drugs were just too much.

Anyway, don't blame yourself for any of this - it is up to the

doctors and the staff at nh to know all this - it's unfortunate not

all of them do. We should not have to be the ones to constantly

suggest care or lack thereof, but I have found that I've had to do

it constantly - but I'm a nurse, so it is easier for me. Sometimes

it actually helps to put on the nurse cap figuratively, take myself

out of the daughter role, whose heart is breaking, and become

medical. Probably part of my defense mechanisms about this.

Just never be afraid to push for what you think is in the best

interest of your mom. Anything is worth trying once.

>

> Hi Everyone

>

> I have just finished reading many days worth of posts.

> I have been away from my computer for quite a while

> and just wanted to bring you up to date on my mom.

>

> My Mom was moved to the NH two weeks ago today. She is

> actually eating pretty well now. They are giving her

> puree foods which are really hard for me to stomach,

> yet I have been feeding her as much as she will eat.

> She still does not like to drink much which is a

> problem.

>

> The Hospice nurse believes she may have a UTI, but no

> test was done. She is however, being treated for an

> infection. She has a catheter now also.

>

> I have read all the posts about lying and I started

> out trying to always tell the truth and be honest with

> my mom. However, it would upset her and she would cry

> and get agitated, so I began to lie to her. But I soon

> realized I was not lying to her, just going along with

> her hallucination. She would ask me how old the

> children were, when no one was home, but myself and

> her and I would say 5 and 7. That would satisfy her.

> It was so much easier for us both and I got over the

> fact that I felt like I was lying to my mother and she

> would find out and be mad at me. She never knew and it

> made life much, much easier for us all.

>

> Now, I just wish I had one of those days back. My

> mother no longer responds to 98% of what you say to

> her. She once in a blue moon will say Hello, if you

> say hello first, but mostly she does not even make eye

> contact with me. I have not noticed others saying that

> this is what has happened to their LO's. It makes me

> think that being on the Risperdal for months has just

> destroyed her brain. She is practically a vegetable

> now. Her only response is to pain. I sit at the NH for

> hours and get nothing from her all day long. I battle

> in my own head about not stopping the medications

> sooner. What do the rest of you think? Could this be

> medication or is it just the progression of the

> insidious disease. She is in the forever end stages of

> LBD. She started with cognitive problems, then on to

> hallucinations and finally PD symptoms. She took

> Aricept for 18 months. In May of 2005 she began

> Risperdal, Clonazapam and Namenda and Prozac. She

> continued on them all until Jan 2006. As I complained

> about the Risperdal and asked repeatedly for the

> Seroquel I was told that the Risperdal was working so

> why change it. I went along with that Philosophy. now

> I think I did the wrong thing. The Hospice Dr. will

> not use Seroquel now as it is too expensive and

> Medicare will not pay for it. I don't think it would

> do any good anyway now. She is just gone. Her body

> lives on and her mind has just evaporated. It is the

> saddest thing to watch. She was very intelligent. She

> had an almost photographic memory. My son has

> inherited that ability now.

>

> If anyone has a comment on what they think I would

> love to here from you.

>

> Dena

>

> Mother (83) dx April 2005 with LBD

>

> __________________________________________________

>

[Guest guest]

Hi June

Thanks for the thought, but I do not think it would be

from the Namenda. She took it for 7 months and was

fine. She has not been on it for 2 months now. Her

urine was very dark and reddish at first, now is it

very gold/pink. I think she is getting better.

Dena

--- June Christensen

wrote:

> I think Namenda might have been responsible for my

> husband's urinary problems but don't know for sure.

> That is one of the side effects. One of the NH gave

> him the 20 mg dose without working up to it, and he

> developed a bad UTI where the urine was very dark

> gold-colored, and he could not void on his own. Had

> a

> catheter for a few weeks, and now is going on his

> own,

> but has some incontinence too.

>

>

> --- Dena LEAVITT wrote:

>

> > Hi Everyone

> >

> > I have just finished reading many days worth of

> > posts.

> > I have been away from my computer for quite a

> while

> > and just wanted to bring you up to date on my mom.

> >

> > My Mom was moved to the NH two weeks ago today.

> She

> > is

> > actually eating pretty well now. They are giving

> her

> > puree foods which are really hard for me to

> stomach,

> > yet I have been feeding her as much as she will

> eat.

> > She still does not like to drink much which is a

> > problem.

> >

> > The Hospice nurse believes she may have a UTI, but

> > no

> > test was done. She is however, being treated for

> an

> > infection. She has a catheter now also.

> >

> > I have read all the posts about lying and I

> started

> > out trying to always tell the truth and be honest

> > with

> > my mom. However, it would upset her and she would

> > cry

> > and get agitated, so I began to lie to her. But I

> > soon

> > realized I was not lying to her, just going along

> > with

> > her hallucination. She would ask me how old the

> > children were, when no one was home, but myself

> and

> > her and I would say 5 and 7. That would satisfy

> her.

> > It was so much easier for us both and I got over

> the

> > fact that I felt like I was lying to my mother and

> > she

> > would find out and be mad at me. She never knew

> and

> > it

> > made life much, much easier for us all.

> >

> > Now, I just wish I had one of those days back. My

> > mother no longer responds to 98% of what you say

> to

> > her. She once in a blue moon will say Hello, if

> you

> > say hello first, but mostly she does not even make

> > eye

> > contact with me. I have not noticed others saying

> > that

> > this is what has happened to their LO's. It makes

> me

> > think that being on the Risperdal for months has

> > just

> > destroyed her brain. She is practically a

> vegetable

> > now. Her only response is to pain. I sit at the NH

> > for

> > hours and get nothing from her all day long. I

> > battle

> > in my own head about not stopping the medications

> > sooner. What do the rest of you think? Could this

> be

> > medication or is it just the progression of the

> > insidious disease. She is in the forever end

> stages

> > of

> > LBD. She started with cognitive problems, then on

> to

> > hallucinations and finally PD symptoms. She took

> > Aricept for 18 months. In May of 2005 she began

> > Risperdal, Clonazapam and Namenda and Prozac. She

> > continued on them all until Jan 2006. As I

> > complained

> > about the Risperdal and asked repeatedly for the

> > Seroquel I was told that the Risperdal was working

> > so

> > why change it. I went along with that Philosophy.

> > now

> > I think I did the wrong thing. The Hospice Dr.

> will

> > not use Seroquel now as it is too expensive and

> > Medicare will not pay for it. I don't think it

> would

> > do any good anyway now. She is just gone. Her body

> > lives on and her mind has just evaporated. It is

> the

> > saddest thing to watch. She was very intelligent.

> > She

> > had an almost photographic memory. My son has

> > inherited that ability now.

> >

> > If anyone has a comment on what they think I would

> > love to here from you.

> >

> > Dena

> >

> > Mother (83) dx April 2005 with LBD

> >

> > __________________________________________________

> >

[Guest guest]

My mom has not been on any medication for at least 8 months. She does not talk

either..although she can, (she will sometimes read something that she sees like

on a window or bumper of a car). Lately she is sleeping when I go to visit and

she will open her eyes, smile at me and then tune me out and close her eyes

again. She stopped eating and couldn't remember how to swallow, but now they

are getting pureed food in to her and she has actually gained weight. She just

wanders, but always has a smile on her face...she never remembered things from

the past or asked questions about where someone was. it was like one day, she

was there and the next her mind was completely blank. It is hard to visit,

because she does not like to look at anything like pictures or t.v., she just

wants to walk, and walk and walk......

( my mom is 67 and in the end stages, but is like the energizer bunny,

she just keep on ticking!)

Hi June

Thanks for the thought, but I do not think it would be

from the Namenda. She took it for 7 months and was

fine. She has not been on it for 2 months now. Her

urine was very dark and reddish at first, now is it

very gold/pink. I think she is getting better.

Dena

--- June Christensen

wrote:

> I think Namenda might have been responsible for my

> husband's urinary problems but don't know for sure.

> That is one of the side effects. One of the NH gave

> him the 20 mg dose without working up to it, and he

> developed a bad UTI where the urine was very dark

> gold-colored, and he could not void on his own. Had

> a

> catheter for a few weeks, and now is going on his

> own,

> but has some incontinence too.

>

>

> --- Dena LEAVITT wrote:

>

> > Hi Everyone

> >

> > I have just finished reading many days worth of

> > posts.

> > I have been away from my computer for quite a

> while

> > and just wanted to bring you up to date on my mom.

> >

> > My Mom was moved to the NH two weeks ago today.

> She

> > is

> > actually eating pretty well now. They are giving

> her

> > puree foods which are really hard for me to

> stomach,

> > yet I have been feeding her as much as she will

> eat.

> > She still does not like to drink much which is a

> > problem.

> >

> > The Hospice nurse believes she may have a UTI, but

> > no

> > test was done. She is however, being treated for

> an

> > infection. She has a catheter now also.

> >

> > I have read all the posts about lying and I

> started

> > out trying to always tell the truth and be honest

> > with

> > my mom. However, it would upset her and she would

> > cry

> > and get agitated, so I began to lie to her. But I

> > soon

> > realized I was not lying to her, just going along

> > with

> > her hallucination. She would ask me how old the

> > children were, when no one was home, but myself

> and

> > her and I would say 5 and 7. That would satisfy

> her.

> > It was so much easier for us both and I got over

> the

> > fact that I felt like I was lying to my mother and

> > she

> > would find out and be mad at me. She never knew

> and

> > it

> > made life much, much easier for us all.

> >

> > Now, I just wish I had one of those days back. My

> > mother no longer responds to 98% of what you say

> to

> > her. She once in a blue moon will say Hello, if

> you

> > say hello first, but mostly she does not even make

> > eye

> > contact with me. I have not noticed others saying

> > that

> > this is what has happened to their LO's. It makes

> me

> > think that being on the Risperdal for months has

> > just

> > destroyed her brain. She is practically a

> vegetable

> > now. Her only response is to pain. I sit at the NH

> > for

> > hours and get nothing from her all day long. I

> > battle

> > in my own head about not stopping the medications

> > sooner. What do the rest of you think? Could this

> be

> > medication or is it just the progression of the

> > insidious disease. She is in the forever end

> stages

> > of

> > LBD. She started with cognitive problems, then on

> to

> > hallucinations and finally PD symptoms. She took

> > Aricept for 18 months. In May of 2005 she began

> > Risperdal, Clonazapam and Namenda and Prozac. She

> > continued on them all until Jan 2006. As I

> > complained

> > about the Risperdal and asked repeatedly for the

> > Seroquel I was told that the Risperdal was working

> > so

> > why change it. I went along with that Philosophy.

> > now

> > I think I did the wrong thing. The Hospice Dr.

> will

> > not use Seroquel now as it is too expensive and

> > Medicare will not pay for it. I don't think it

> would

> > do any good anyway now. She is just gone. Her body

> > lives on and her mind has just evaporated. It is

> the

> > saddest thing to watch. She was very intelligent.

> > She

> > had an almost photographic memory. My son has

> > inherited that ability now.

> >

> > If anyone has a comment on what they think I would

> > love to here from you.

> >

> > Dena

> >

> > Mother (83) dx April 2005 with LBD

> >

> > __________________________________________________

> >

[Guest guest]

Dena,

I have missed seeing post from you for a bit. Good to have you back.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

update on my mom/ lying

[Guest guest]

Was your mother diagnosed with LBD? There is also a

dementia called Pick's, I think, and one of the things

they do is walk and walk. There are three ladies at

the NH where my husband is that do the same. They

can't stay at the table for any length of time to eat

and will leave, walk up and down the halls, then

return and eat a little more, then walk again. One

carries her purse with her, as she is " going home. "

My husband also reads signs, but they mean nothing to

him. I am surprised that he retains the ability to

read words, even tho they don't mean anything.

--- Maxey wrote:

> My mom has not been on any medication for at least 8

> months. She does not talk either..although she can,

> (she will sometimes read something that she sees

> like on a window or bumper of a car). Lately she is

> sleeping when I go to visit and she will open her

> eyes, smile at me and then tune me out and close her

> eyes again. She stopped eating and couldn't

> remember how to swallow, but now they are getting

> pureed food in to her and she has actually gained

> weight. She just wanders, but always has a smile on

> her face...she never remembered things from the past

> or asked questions about where someone was. it was

> like one day, she was there and the next her mind

> was completely blank. It is hard to visit, because

> she does not like to look at anything like pictures

> or t.v., she just wants to walk, and walk and

> walk......

>

> ( my mom is 67 and in the end stages, but

> is like the energizer bunny, she just keep on

> ticking!)

>

>

> Hi June

> Thanks for the thought, but I do not think it would

> be

> from the Namenda. She took it for 7 months and was

> fine. She has not been on it for 2 months now. Her

> urine was very dark and reddish at first, now is it

> very gold/pink. I think she is getting better.

>

> Dena

>

> --- June Christensen

> wrote:

>

> > I think Namenda might have been responsible for my

> > husband's urinary problems but don't know for

> sure.

> > That is one of the side effects. One of the NH

> gave

> > him the 20 mg dose without working up to it, and

> he

> > developed a bad UTI where the urine was very dark

> > gold-colored, and he could not void on his own.

> Had

> > a

> > catheter for a few weeks, and now is going on his

> > own,

> > but has some incontinence too.

> >

> >

> > --- Dena LEAVITT wrote:

> >

> > > Hi Everyone

> > >

> > > I have just finished reading many days worth of

> > > posts.

> > > I have been away from my computer for quite a

> > while

> > > and just wanted to bring you up to date on my

> mom.

> > >

> > > My Mom was moved to the NH two weeks ago today.

> > She

> > > is

> > > actually eating pretty well now. They are giving

> > her

> > > puree foods which are really hard for me to

> > stomach,

> > > yet I have been feeding her as much as she will

> > eat.

> > > She still does not like to drink much which is a

> > > problem.

> > >

> > > The Hospice nurse believes she may have a UTI,

> but

> > > no

> > > test was done. She is however, being treated for

> > an

> > > infection. She has a catheter now also.

> > >

> > > I have read all the posts about lying and I

> > started

> > > out trying to always tell the truth and be

> honest

> > > with

> > > my mom. However, it would upset her and she

> would

> > > cry

> > > and get agitated, so I began to lie to her. But

> I

> > > soon

> > > realized I was not lying to her, just going

> along

> > > with

> > > her hallucination. She would ask me how old the

> > > children were, when no one was home, but myself

> > and

> > > her and I would say 5 and 7. That would satisfy

> > her.

> > > It was so much easier for us both and I got over

> > the

> > > fact that I felt like I was lying to my mother

> and

> > > she

> > > would find out and be mad at me. She never knew

> > and

> > > it

> > > made life much, much easier for us all.

> > >

> > > Now, I just wish I had one of those days back.

> My

> > > mother no longer responds to 98% of what you say

> > to

> > > her. She once in a blue moon will say Hello, if

> > you

> > > say hello first, but mostly she does not even

> make

> > > eye

> > > contact with me. I have not noticed others

> saying

> > > that

> > > this is what has happened to their LO's. It

> makes

> > me

> > > think that being on the Risperdal for months has

> > > just

> > > destroyed her brain. She is practically a

> > vegetable

> > > now. Her only response is to pain. I sit at the

> NH

> > > for

> > > hours and get nothing from her all day long. I

> > > battle

> > > in my own head about not stopping the

> medications

> > > sooner. What do the rest of you think? Could

> this

> > be

> > > medication or is it just the progression of the

> > > insidious disease. She is in the forever end

> > stages

> > > of

> > > LBD. She started with cognitive problems, then

> on

> > to

> > > hallucinations and finally PD symptoms. She took

> > > Aricept for 18 months. In May of 2005 she began

> > > Risperdal, Clonazapam and Namenda and Prozac.

> She

> > > continued on them all until Jan 2006. As I

> > > complained

> > > about the Risperdal and asked repeatedly for the

> > > Seroquel I was told that the Risperdal was

> working

> > > so

> > > why change it. I went along with that

> Philosophy.

> > > now

> > > I think I did the wrong thing. The Hospice Dr.

> > will

> > > not use Seroquel now as it is too expensive and

> > > Medicare will not pay for it. I don't think it

> > would

> > > do any good anyway now. She is just gone. Her

> body

> > > lives on and her mind has just evaporated. It is

> > the

> > > saddest thing to watch. She was very

> intelligent.

> > > She

> > > had an almost photographic memory. My son has

> > > inherited that ability now.

> > >

> > > If anyone has a comment on what they think I

> would

> > > love to here from you.

> > >

> > > Dena

> > >

> > > Mother (83) dx April 2005 with LBD

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Was your mother diagnosed with LBD? There is also a

dementia called Pick's, I think, and one of the things

they do is walk and walk. There are three ladies at

the NH where my husband is that do the same. They

can't stay at the table for any length of time to eat

and will leave, walk up and down the halls, then

return and eat a little more, then walk again. One

carries her purse with her, as she is " going home. "

My husband also reads signs, but they mean nothing to

him. I am surprised that he retains the ability to

read words, even tho they don't mean anything.

--- Maxey wrote:

> My mom has not been on any medication for at least 8

> months. She does not talk either..although she can,

> (she will sometimes read something that she sees

> like on a window or bumper of a car). Lately she is

> sleeping when I go to visit and she will open her

> eyes, smile at me and then tune me out and close her

> eyes again. She stopped eating and couldn't

> remember how to swallow, but now they are getting

> pureed food in to her and she has actually gained

> weight. She just wanders, but always has a smile on

> her face...she never remembered things from the past

> or asked questions about where someone was. it was

> like one day, she was there and the next her mind

> was completely blank. It is hard to visit, because

> she does not like to look at anything like pictures

> or t.v., she just wants to walk, and walk and

> walk......

>

> ( my mom is 67 and in the end stages, but

> is like the energizer bunny, she just keep on

> ticking!)

>

>

> Hi June

> Thanks for the thought, but I do not think it would

> be

> from the Namenda. She took it for 7 months and was

> fine. She has not been on it for 2 months now. Her

> urine was very dark and reddish at first, now is it

> very gold/pink. I think she is getting better.

>

> Dena

>

> --- June Christensen

> wrote:

>

> > I think Namenda might have been responsible for my

> > husband's urinary problems but don't know for

> sure.

> > That is one of the side effects. One of the NH

> gave

> > him the 20 mg dose without working up to it, and

> he

> > developed a bad UTI where the urine was very dark

> > gold-colored, and he could not void on his own.

> Had

> > a

> > catheter for a few weeks, and now is going on his

> > own,

> > but has some incontinence too.

> >

> >

> > --- Dena LEAVITT wrote:

> >

> > > Hi Everyone

> > >

> > > I have just finished reading many days worth of

> > > posts.

> > > I have been away from my computer for quite a

> > while

> > > and just wanted to bring you up to date on my

> mom.

> > >

> > > My Mom was moved to the NH two weeks ago today.

> > She

> > > is

> > > actually eating pretty well now. They are giving

> > her

> > > puree foods which are really hard for me to

> > stomach,

> > > yet I have been feeding her as much as she will

> > eat.

> > > She still does not like to drink much which is a

> > > problem.

> > >

> > > The Hospice nurse believes she may have a UTI,

> but

> > > no

> > > test was done. She is however, being treated for

> > an

> > > infection. She has a catheter now also.

> > >

> > > I have read all the posts about lying and I

> > started

> > > out trying to always tell the truth and be

> honest

> > > with

> > > my mom. However, it would upset her and she

> would

> > > cry

> > > and get agitated, so I began to lie to her. But

> I

> > > soon

> > > realized I was not lying to her, just going

> along

> > > with

> > > her hallucination. She would ask me how old the

> > > children were, when no one was home, but myself

> > and

> > > her and I would say 5 and 7. That would satisfy

> > her.

> > > It was so much easier for us both and I got over

> > the

> > > fact that I felt like I was lying to my mother

> and

> > > she

> > > would find out and be mad at me. She never knew

> > and

> > > it

> > > made life much, much easier for us all.

> > >

> > > Now, I just wish I had one of those days back.

> My

> > > mother no longer responds to 98% of what you say

> > to

> > > her. She once in a blue moon will say Hello, if

> > you

> > > say hello first, but mostly she does not even

> make

> > > eye

> > > contact with me. I have not noticed others

> saying

> > > that

> > > this is what has happened to their LO's. It

> makes

> > me

> > > think that being on the Risperdal for months has

> > > just

> > > destroyed her brain. She is practically a

> > vegetable

> > > now. Her only response is to pain. I sit at the

> NH

> > > for

> > > hours and get nothing from her all day long. I

> > > battle

> > > in my own head about not stopping the

> medications

> > > sooner. What do the rest of you think? Could

> this

> > be

> > > medication or is it just the progression of the

> > > insidious disease. She is in the forever end

> > stages

> > > of

> > > LBD. She started with cognitive problems, then

> on

> > to

> > > hallucinations and finally PD symptoms. She took

> > > Aricept for 18 months. In May of 2005 she began

> > > Risperdal, Clonazapam and Namenda and Prozac.

> She

> > > continued on them all until Jan 2006. As I

> > > complained

> > > about the Risperdal and asked repeatedly for the

> > > Seroquel I was told that the Risperdal was

> working

> > > so

> > > why change it. I went along with that

> Philosophy.

> > > now

> > > I think I did the wrong thing. The Hospice Dr.

> > will

> > > not use Seroquel now as it is too expensive and

> > > Medicare will not pay for it. I don't think it

> > would

> > > do any good anyway now. She is just gone. Her

> body

> > > lives on and her mind has just evaporated. It is

> > the

> > > saddest thing to watch. She was very

> intelligent.

> > > She

> > > had an almost photographic memory. My son has

> > > inherited that ability now.

> > >

> > > If anyone has a comment on what they think I

> would

> > > love to here from you.

> > >

> > > Dena

> > >

> > > Mother (83) dx April 2005 with LBD

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Was your mother diagnosed with LBD? There is also a

dementia called Pick's, I think, and one of the things

they do is walk and walk. There are three ladies at

the NH where my husband is that do the same. They

can't stay at the table for any length of time to eat

and will leave, walk up and down the halls, then

return and eat a little more, then walk again. One

carries her purse with her, as she is " going home. "

My husband also reads signs, but they mean nothing to

him. I am surprised that he retains the ability to

read words, even tho they don't mean anything.

--- Maxey wrote:

> My mom has not been on any medication for at least 8

> months. She does not talk either..although she can,

> (she will sometimes read something that she sees

> like on a window or bumper of a car). Lately she is

> sleeping when I go to visit and she will open her

> eyes, smile at me and then tune me out and close her

> eyes again. She stopped eating and couldn't

> remember how to swallow, but now they are getting

> pureed food in to her and she has actually gained

> weight. She just wanders, but always has a smile on

> her face...she never remembered things from the past

> or asked questions about where someone was. it was

> like one day, she was there and the next her mind

> was completely blank. It is hard to visit, because

> she does not like to look at anything like pictures

> or t.v., she just wants to walk, and walk and

> walk......

>

> ( my mom is 67 and in the end stages, but

> is like the energizer bunny, she just keep on

> ticking!)

>

>

> Hi June

> Thanks for the thought, but I do not think it would

> be

> from the Namenda. She took it for 7 months and was

> fine. She has not been on it for 2 months now. Her

> urine was very dark and reddish at first, now is it

> very gold/pink. I think she is getting better.

>

> Dena

>

> --- June Christensen

> wrote:

>

> > I think Namenda might have been responsible for my

> > husband's urinary problems but don't know for

> sure.

> > That is one of the side effects. One of the NH

> gave

> > him the 20 mg dose without working up to it, and

> he

> > developed a bad UTI where the urine was very dark

> > gold-colored, and he could not void on his own.

> Had

> > a

> > catheter for a few weeks, and now is going on his

> > own,

> > but has some incontinence too.

> >

> >

> > --- Dena LEAVITT wrote:

> >

> > > Hi Everyone

> > >

> > > I have just finished reading many days worth of

> > > posts.

> > > I have been away from my computer for quite a

> > while

> > > and just wanted to bring you up to date on my

> mom.

> > >

> > > My Mom was moved to the NH two weeks ago today.

> > She

> > > is

> > > actually eating pretty well now. They are giving

> > her

> > > puree foods which are really hard for me to

> > stomach,

> > > yet I have been feeding her as much as she will

> > eat.

> > > She still does not like to drink much which is a

> > > problem.

> > >

> > > The Hospice nurse believes she may have a UTI,

> but

> > > no

> > > test was done. She is however, being treated for

> > an

> > > infection. She has a catheter now also.

> > >

> > > I have read all the posts about lying and I

> > started

> > > out trying to always tell the truth and be

> honest

> > > with

> > > my mom. However, it would upset her and she

> would

> > > cry

> > > and get agitated, so I began to lie to her. But

> I

> > > soon

> > > realized I was not lying to her, just going

> along

> > > with

> > > her hallucination. She would ask me how old the

> > > children were, when no one was home, but myself

> > and

> > > her and I would say 5 and 7. That would satisfy

> > her.

> > > It was so much easier for us both and I got over

> > the

> > > fact that I felt like I was lying to my mother

> and

> > > she

> > > would find out and be mad at me. She never knew

> > and

> > > it

> > > made life much, much easier for us all.

> > >

> > > Now, I just wish I had one of those days back.

> My

> > > mother no longer responds to 98% of what you say

> > to

> > > her. She once in a blue moon will say Hello, if

> > you

> > > say hello first, but mostly she does not even

> make

> > > eye

> > > contact with me. I have not noticed others

> saying

> > > that

> > > this is what has happened to their LO's. It

> makes

> > me

> > > think that being on the Risperdal for months has

> > > just

> > > destroyed her brain. She is practically a

> > vegetable

> > > now. Her only response is to pain. I sit at the

> NH

> > > for

> > > hours and get nothing from her all day long. I

> > > battle

> > > in my own head about not stopping the

> medications

> > > sooner. What do the rest of you think? Could

> this

> > be

> > > medication or is it just the progression of the

> > > insidious disease. She is in the forever end

> > stages

> > > of

> > > LBD. She started with cognitive problems, then

> on

> > to

> > > hallucinations and finally PD symptoms. She took

> > > Aricept for 18 months. In May of 2005 she began

> > > Risperdal, Clonazapam and Namenda and Prozac.

> She

> > > continued on them all until Jan 2006. As I

> > > complained

> > > about the Risperdal and asked repeatedly for the

> > > Seroquel I was told that the Risperdal was

> working

> > > so

> > > why change it. I went along with that

> Philosophy.

> > > now

> > > I think I did the wrong thing. The Hospice Dr.

> > will

> > > not use Seroquel now as it is too expensive and

> > > Medicare will not pay for it. I don't think it

> > would

> > > do any good anyway now. She is just gone. Her

> body

> > > lives on and her mind has just evaporated. It is

> > the

> > > saddest thing to watch. She was very

> intelligent.

> > > She

> > > had an almost photographic memory. My son has

> > > inherited that ability now.

> > >

> > > If anyone has a comment on what they think I

> would

> > > love to here from you.

> > >

> > > Dena

> > >

> > > Mother (83) dx April 2005 with LBD

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Hi Dena - How long has your mother been drug-free (with the exception

of Lopressor)? I ask because I've heard that it can take somewhere

between 4-6 weeks before the effects of the drugs get out of their

system. When my mother was on the latest drugs she was sleeping 90%

of the time. And even though she was removed from all the post-

surgery meds and became drug-free on 2/19 it wasn't until 3/17 before

the miracle happened where she requested the head nurse to call me to

find out when I was visiting. Only after that 4-6 weeks timeframe

will you know if what she's experiencing right now is medication

related or LBD related. I feel your frustration and am right there

with you in regards to feeling the guilt - but remember it's 'false

guilt' - we aren't the experts - we don't have a looking glass that

can foresee what our decisions will do for our LOs - but whatever

decisions we did make were made out of LOVE and we can't feel guilty

for LOVING our LOs.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid progression from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

PS I hear you about that puree food - what these caretakers do in the

NH can certainly turn my stomach. This one resident is asleep ALL the

time - and they still feed her - when she's snoring. One of the aides

would make up these concoctions for my mother - pour milk into a

glass, stir in mashed potatoes, butter, sugar, squash, and have my

mother swallow it - wanted to puke everytime I watched it! But it

worked - she was instrumental in getting my mother to gain weight -

and at least she'd end the 'meal' with ice cream...

>

> Hi Everyone

>

> I have just finished reading many days worth of posts.

> I have been away from my computer for quite a while

> and just wanted to bring you up to date on my mom.

>

> My Mom was moved to the NH two weeks ago today. She is

> actually eating pretty well now. They are giving her

> puree foods which are really hard for me to stomach,

> yet I have been feeding her as much as she will eat.

> She still does not like to drink much which is a

> problem.

>

> The Hospice nurse believes she may have a UTI, but no

> test was done. She is however, being treated for an

> infection. She has a catheter now also.

>

> I have read all the posts about lying and I started

> out trying to always tell the truth and be honest with

> my mom. However, it would upset her and she would cry

> and get agitated, so I began to lie to her. But I soon

> realized I was not lying to her, just going along with

> her hallucination. She would ask me how old the

> children were, when no one was home, but myself and

> her and I would say 5 and 7. That would satisfy her.

> It was so much easier for us both and I got over the

> fact that I felt like I was lying to my mother and she

> would find out and be mad at me. She never knew and it

> made life much, much easier for us all.

>

> Now, I just wish I had one of those days back. My

> mother no longer responds to 98% of what you say to

> her. She once in a blue moon will say Hello, if you

> say hello first, but mostly she does not even make eye

> contact with me. I have not noticed others saying that

> this is what has happened to their LO's. It makes me

> think that being on the Risperdal for months has just

> destroyed her brain. She is practically a vegetable

> now. Her only response is to pain. I sit at the NH for

> hours and get nothing from her all day long. I battle

> in my own head about not stopping the medications

> sooner. What do the rest of you think? Could this be

> medication or is it just the progression of the

> insidious disease. She is in the forever end stages of

> LBD. She started with cognitive problems, then on to

> hallucinations and finally PD symptoms. She took

> Aricept for 18 months. In May of 2005 she began

> Risperdal, Clonazapam and Namenda and Prozac. She

> continued on them all until Jan 2006. As I complained

> about the Risperdal and asked repeatedly for the

> Seroquel I was told that the Risperdal was working so

> why change it. I went along with that Philosophy. now

> I think I did the wrong thing. The Hospice Dr. will

> not use Seroquel now as it is too expensive and

> Medicare will not pay for it. I don't think it would

> do any good anyway now. She is just gone. Her body

> lives on and her mind has just evaporated. It is the

> saddest thing to watch. She was very intelligent. She

> had an almost photographic memory. My son has

> inherited that ability now.

>

> If anyone has a comment on what they think I would

> love to here from you.

>

> Dena

>

> Mother (83) dx April 2005 with LBD

>

> __________________________________________________

>

[Guest guest]

Then I would wonder if she still has a need for maybe the Prozac and

the Aricept. Sounds like she changed soon after coming off those

drugs, maybe they actually were helping her.

And - like all of us - we always wonder what is actually just

related to the disease and it is so very hard to tell.

-- In LBDcaregivers , Dena LEAVITT

wrote:

>

> Hi

>

> I did not give you the whole story I guess. My mom is

> not on any drugs now, expect Lopressor for her heart

> and b/p if need be. So her non responsiveness is not

> drug related at this point. I do know what you mean

> about over medication through. I went through that

> many times before I found this group.

>

> When she really changed was when the Hospice Dr took

> her off of Aricept, Prozac, Namenda, Lisinipril. In

> about 10 days she started to make no sense at all. She

> would try to tell me something, but I could not

> understand her and she could not understand me. It was

> like we were speaking two different languages. After 3

> weeks or so, she became content in her own little

> world. She would chatter to her Lewy-friends and just

> sort of cut out everything else. Now 2 1/2 months

> later she rarely talks or makes eye contact. I guess I

> probably will never know why this happened. I just

> felt that maybe all those drugs for 7 or so months

> could have made her like this or is this just another

> phase of this disease.

>

> Dena

>

> --- wrote:

>

> > Dena,

> >

> > If you saw my posts, my mother was reaching the

> > stage your mother

> > sounds like she is in. They put her in Hospice also

> > and had all her

> > meds increased over a while. She turned into a

> > zombie, leaning half

> > out of the chair or in bed all the time, with her

> > eyes shut,

> > couldn't carry on any conversation, etc, and I

> > finally had them

> > adjust all the meds to the lowest dose possible and

> > stop some of

> > them. She has changed so much since that occurred

> > and is the best

> > she's been in 2 or more years.

> >

> > I would not want to suggest that this could happen

> > to everyone - I

> > feel very blessed - and they might be in totally

> > different stages of

> > the disease. However, I just feel that so many

> > problems are caused

> > by the drugs they are using to try to help, and

> > definitely when

> > there are many and the combos might not be good,

> > lots of

> > interactions and lots of adverse symptoms and lots

> > of wierd things

> > that happen with LBD and PD and the neuroleptic

> > syndrome too.

> >

> > At one time they did have my mom on Prozac and two

> > anti-anxiety

> > drugs, one being Clonopin, and she turned into a

> > zombie then too, so

> > we stopped all those but the Prozac and she turned

> > around, that was

> > several years ago. It is just so hard to tell what

> > the meds might

> > do. I also questioned the doctor that they also

> > need to know that

> > their kidney and liver function is good, because if

> > not, they are

> > not able to metabolize the drugs, so they are just

> > accumulating to

> > overdose level in their system. I made them check

> > her blood too, to

> > see if that were true. She was okay in that area,

> > so I know the

> > drugs were just too much.

> >

> > Anyway, don't blame yourself for any of this - it is

> > up to the

> > doctors and the staff at nh to know all this - it's

> > unfortunate not

> > all of them do. We should not have to be the ones

> > to constantly

> > suggest care or lack thereof, but I have found that

> > I've had to do

> > it constantly - but I'm a nurse, so it is easier for

> > me. Sometimes

> > it actually helps to put on the nurse cap

> > figuratively, take myself

> > out of the daughter role, whose heart is breaking,

> > and become

> > medical. Probably part of my defense mechanisms

> > about this.

> >

> > Just never be afraid to push for what you think is

> > in the best

> > interest of your mom. Anything is worth trying

> > once.

> >

> >

> >

> >

> > >

> > > Hi Everyone

> > >

> > > I have just finished reading many days worth of

> > posts.

> > > I have been away from my computer for quite a

> > while

> > > and just wanted to bring you up to date on my mom.

> > >

> > > My Mom was moved to the NH two weeks ago today.

> > She is

> > > actually eating pretty well now. They are giving

> > her

> > > puree foods which are really hard for me to

> > stomach,

> > > yet I have been feeding her as much as she will

> > eat.

> > > She still does not like to drink much which is a

> > > problem.

> > >

> > > The Hospice nurse believes she may have a UTI, but

> > no

> > > test was done. She is however, being treated for

> > an

> > > infection. She has a catheter now also.

> > >

> > > I have read all the posts about lying and I

> > started

> > > out trying to always tell the truth and be honest

> > with

> > > my mom. However, it would upset her and she would

> > cry

> > > and get agitated, so I began to lie to her. But I

> > soon

> > > realized I was not lying to her, just going along

> > with

> > > her hallucination. She would ask me how old the

> > > children were, when no one was home, but myself

> > and

> > > her and I would say 5 and 7. That would satisfy

> > her.

> > > It was so much easier for us both and I got over

> > the

> > > fact that I felt like I was lying to my mother and

> > she

> > > would find out and be mad at me. She never knew

> > and it

> > > made life much, much easier for us all.

> > >

> > > Now, I just wish I had one of those days back. My

> > > mother no longer responds to 98% of what you say

> > to

> > > her. She once in a blue moon will say Hello, if

> > you

> > > say hello first, but mostly she does not even make

> > eye

> > > contact with me. I have not noticed others saying

> > that

> > > this is what has happened to their LO's. It makes

> > me

> > > think that being on the Risperdal for months has

> > just

> > > destroyed her brain. She is practically a

> > vegetable

> > > now. Her only response is to pain. I sit at the NH

> > for

> > > hours and get nothing from her all day long. I

> > battle

> > > in my own head about not stopping the medications

> > > sooner. What do the rest of you think? Could this

> > be

> > > medication or is it just the progression of the

> > > insidious disease. She is in the forever end

> > stages of

> > > LBD. She started with cognitive problems, then on

> > to

> > > hallucinations and finally PD symptoms. She took

> > > Aricept for 18 months. In May of 2005 she began

> > > Risperdal, Clonazapam and Namenda and Prozac. She

> > > continued on them all until Jan 2006. As I

> > complained

> > > about the Risperdal and asked repeatedly for the

> > > Seroquel I was told that the Risperdal was working

> > so

> > > why change it. I went along with that Philosophy.

> > now

> > > I think I did the wrong thing. The Hospice Dr.

> > will

> > > not use Seroquel now as it is too expensive and

> > > Medicare will not pay for it. I don't think it

> > would

> > > do any good anyway now. She is just gone. Her body

> > > lives on and her mind has just evaporated. It is

> > the

> > > saddest thing to watch. She was very intelligent.

> > She

> > > had an almost photographic memory. My son has

> > > inherited that ability now.

> > >

> > > If anyone has a comment on what they think I would

> > > love to here from you.

> > >

> > > Dena

> > >

> > > Mother (83) dx April 2005 with LBD

> > >

> > > __________________________________________________

> > >

[Guest guest]

Hi

Your story breaks my heart. Your mom is so young. This

is a very tough disease to live with and live through.

Thanks for your thoughts

Dena

--- Maxey wrote:

> My mom has not been on any medication for at least 8

> months. She does not talk either..although she can,

> (she will sometimes read something that she sees

> like on a window or bumper of a car). Lately she is

> sleeping when I go to visit and she will open her

> eyes, smile at me and then tune me out and close her

> eyes again. She stopped eating and couldn't

> remember how to swallow, but now they are getting

> pureed food in to her and she has actually gained

> weight. She just wanders, but always has a smile on

> her face...she never remembered things from the past

> or asked questions about where someone was. it was

> like one day, she was there and the next her mind

> was completely blank. It is hard to visit, because

> she does not like to look at anything like pictures

> or t.v., she just wants to walk, and walk and

> walk......

>

> ( my mom is 67 and in the end stages, but

> is like the energizer bunny, she just keep on

> ticking!)

>

>

> Hi June

> Thanks for the thought, but I do not think it would

> be

> from the Namenda. She took it for 7 months and was

> fine. She has not been on it for 2 months now. Her

> urine was very dark and reddish at first, now is it

> very gold/pink. I think she is getting better.

>

> Dena

>

> --- June Christensen

> wrote:

>

> > I think Namenda might have been responsible for my

> > husband's urinary problems but don't know for

> sure.

> > That is one of the side effects. One of the NH

> gave

> > him the 20 mg dose without working up to it, and

> he

> > developed a bad UTI where the urine was very dark

> > gold-colored, and he could not void on his own.

> Had

> > a

> > catheter for a few weeks, and now is going on his

> > own,

> > but has some incontinence too.

> >

> >

> > --- Dena LEAVITT wrote:

> >

> > > Hi Everyone

> > >

> > > I have just finished reading many days worth of

> > > posts.

> > > I have been away from my computer for quite a

> > while

> > > and just wanted to bring you up to date on my

> mom.

> > >

> > > My Mom was moved to the NH two weeks ago today.

> > She

> > > is

> > > actually eating pretty well now. They are giving

> > her

> > > puree foods which are really hard for me to

> > stomach,

> > > yet I have been feeding her as much as she will

> > eat.

> > > She still does not like to drink much which is a

> > > problem.

> > >

> > > The Hospice nurse believes she may have a UTI,

> but

> > > no

> > > test was done. She is however, being treated for

> > an

> > > infection. She has a catheter now also.

> > >

> > > I have read all the posts about lying and I

> > started

> > > out trying to always tell the truth and be

> honest

> > > with

> > > my mom. However, it would upset her and she

> would

> > > cry

> > > and get agitated, so I began to lie to her. But

> I

> > > soon

> > > realized I was not lying to her, just going

> along

> > > with

> > > her hallucination. She would ask me how old the

> > > children were, when no one was home, but myself

> > and

> > > her and I would say 5 and 7. That would satisfy

> > her.

> > > It was so much easier for us both and I got over

> > the

> > > fact that I felt like I was lying to my mother

> and

> > > she

> > > would find out and be mad at me. She never knew

> > and

> > > it

> > > made life much, much easier for us all.

> > >

> > > Now, I just wish I had one of those days back.

> My

> > > mother no longer responds to 98% of what you say

> > to

> > > her. She once in a blue moon will say Hello, if

> > you

> > > say hello first, but mostly she does not even

> make

> > > eye

> > > contact with me. I have not noticed others

> saying

> > > that

> > > this is what has happened to their LO's. It

> makes

> > me

> > > think that being on the Risperdal for months has

> > > just

> > > destroyed her brain. She is practically a

> > vegetable

> > > now. Her only response is to pain. I sit at the

> NH

> > > for

> > > hours and get nothing from her all day long. I

> > > battle

> > > in my own head about not stopping the

> medications

> > > sooner. What do the rest of you think? Could

> this

> > be

> > > medication or is it just the progression of the

> > > insidious disease. She is in the forever end

> > stages

> > > of

> > > LBD. She started with cognitive problems, then

> on

> > to

> > > hallucinations and finally PD symptoms. She took

> > > Aricept for 18 months. In May of 2005 she began

> > > Risperdal, Clonazapam and Namenda and Prozac.

> She

> > > continued on them all until Jan 2006. As I

> > > complained

> > > about the Risperdal and asked repeatedly for the

> > > Seroquel I was told that the Risperdal was

> working

> > > so

> > > why change it. I went along with that

> Philosophy.

> > > now

> > > I think I did the wrong thing. The Hospice Dr.

> > will

> > > not use Seroquel now as it is too expensive and

> > > Medicare will not pay for it. I don't think it

> > would

> > > do any good anyway now. She is just gone. Her

> body

> > > lives on and her mind has just evaporated. It is

> > the

> > > saddest thing to watch. She was very

> intelligent.

> > > She

> > > had an almost photographic memory. My son has

> > > inherited that ability now.

> > >

> > > If anyone has a comment on what they think I

> would

> > > love to here from you.

> > >

> > > Dena

> > >

> > > Mother (83) dx April 2005 with LBD

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

I'm so sorry that you are witness to this part of the disease. I

certainly don't look forward to playing witness to it either. For

both our sakes, let's hope it's not a slow and drawn out phase - b/c

even being witness to it for just a short period of time is difficult

enough. You & your mom are in my thoughts and prayers...

> > >

> > > Hi Everyone

> > >

> > > I have just finished reading many days worth of

> > posts.

> > > I have been away from my computer for quite a

> > while

> > > and just wanted to bring you up to date on my mom.

> > >

> > > My Mom was moved to the NH two weeks ago today.

> > She is

> > > actually eating pretty well now. They are giving

> > her

> > > puree foods which are really hard for me to

> > stomach,

> > > yet I have been feeding her as much as she will

> > eat.

> > > She still does not like to drink much which is a

> > > problem.

> > >

> > > The Hospice nurse believes she may have a UTI, but

> > no

> > > test was done. She is however, being treated for

> > an

> > > infection. She has a catheter now also.

> > >

> > > I have read all the posts about lying and I

> > started

> > > out trying to always tell the truth and be honest

> > with

> > > my mom. However, it would upset her and she would

> > cry

> > > and get agitated, so I began to lie to her. But I

> > soon

> > > realized I was not lying to her, just going along

> > with

> > > her hallucination. She would ask me how old the

> > > children were, when no one was home, but myself

> > and

> > > her and I would say 5 and 7. That would satisfy

> > her.

> > > It was so much easier for us both and I got over

> > the

> > > fact that I felt like I was lying to my mother and

> > she

> > > would find out and be mad at me. She never knew

> > and it

> > > made life much, much easier for us all.

> > >

> > > Now, I just wish I had one of those days back. My

> > > mother no longer responds to 98% of what you say

> > to

> > > her. She once in a blue moon will say Hello, if

> > you

> > > say hello first, but mostly she does not even make

> > eye

> > > contact with me. I have not noticed others saying

> > that

> > > this is what has happened to their LO's. It makes

> > me

> > > think that being on the Risperdal for months has

> > just

> > > destroyed her brain. She is practically a

> > vegetable

> > > now. Her only response is to pain. I sit at the NH

> > for

> > > hours and get nothing from her all day long. I

> > battle

> > > in my own head about not stopping the medications

> > > sooner. What do the rest of you think? Could this

> > be

> > > medication or is it just the progression of the

> > > insidious disease. She is in the forever end

> > stages of

> > > LBD. She started with cognitive problems, then on

> > to

> > > hallucinations and finally PD symptoms. She took

> > > Aricept for 18 months. In May of 2005 she began

> > > Risperdal, Clonazapam and Namenda and Prozac. She

> > > continued on them all until Jan 2006. As I

> > complained

> > > about the Risperdal and asked repeatedly for the

> > > Seroquel I was told that the Risperdal was working

> > so

> > > why change it. I went along with that Philosophy.

> > now

> > > I think I did the wrong thing. The Hospice Dr.

> > will

> > > not use Seroquel now as it is too expensive and

> > > Medicare will not pay for it. I don't think it

> > would

> > > do any good anyway now. She is just gone. Her body

> > > lives on and her mind has just evaporated. It is

> > the

> > > saddest thing to watch. She was very intelligent.

> > She

> > > had an almost photographic memory. My son has

> > > inherited that ability now.

> > >

> > > If anyone has a comment on what they think I would

> > > love to here from you.

> > >

> > > Dena

> > >

> > > Mother (83) dx April 2005 with LBD

> > >

> > > __________________________________________________

> > >

[Guest guest]

Yes, I know this problem too. For a while I've made sure than any

groups I join, I set the options to " no email " and just check them on

the web site ..... otherwise mail box is inundated

-- In LBDcaregivers , STEVE & KATHY WARD

wrote:

>

> Ha I know what you mean...I had over 800 in my email and have

managed to delete down to 481 in the past few days. I try to delete

at least 5 when I go to the bathroom as the computer is in the room

next to it...and I skim alot.

>

> kath

>

> Dena LEAVITT wrote:

> Hi Kathy

>

> I am really having a hard time keeping up with all the

> e-mails lately. I spend a large portion of the day at

> the NH and then come home to do dinner etc.. My day is

> over before I know it. So I am reading over 100

> e-mails again too.

>

> Thank you for the idea. I will ask the NH if they will

> do a minced diet for her. I know she can still chew

> food and was not having trouble swallowing really when

> she left my home. She would cough after water

> sometimes, but was eating soft food, not pureed. I

> will ask today. Thanks Kath

>

> Dena

>

> --- STEVE & KATHY WARD wrote:

>

> > Dena

> >

> > My mom went on " minced diet " not because of

> > swallowing problems but because it was easier on her

> > to chew. I thought she would hate it, but the truth

> > is she really didn't seem to mind. I continue to

> > bring her things like fish and chips and cookies and

> > she loves that too. I dont think she says wow this

> > supper tastes great but eats a reasonable portion

> > now where before she ate hardly at all.

> >

> > Sometimes we put our own feelings in to it when in

> > fact they have a different view. I hope that this

> > is true of your mom, but one thing is for sure...she

> > has a wonderful caring daughter who has done

> > everything she can to make her life better.

> >

> > Kath

> >

> > Dena LEAVITT wrote:

> > Hi

> >

> > She has been off of the Aricept, Namenda, Prozac,

> > Lisinipril for about 10 weeks and the Risperdal and

> > Clonzapam for about 2 weeks. Someone else here on

> > this

> > site once said it so perfectly. I am caring for the

> > shell. That statement is so true with my mom. She

> > does

> > not respond to anything except pain. I feel like her

> > last pleasure was food and now that is gone as well.

> > She only eats puree foods and I just can't see the

> > pleasure in that at all. My only prayer at this

> > point

> > is that God will remember her and take her home as

> > soon as He can. It is a truly miserable ending.

> >

> > Dena

> >

> > --- octoryrose wrote:

> >

> > > Hi Dena - How long has your mother been drug-free

> > > (with the exception

> > > of Lopressor)? I ask because I've heard that it

> > can

> > > take somewhere

> > > between 4-6 weeks before the effects of the drugs

> > > get out of their

> > > system. When my mother was on the latest drugs she

> > > was sleeping 90%

> > > of the time. And even though she was removed from

> > > all the post-

> > > surgery meds and became drug-free on 2/19 it

> > wasn't

> > > until 3/17 before

> > > the miracle happened where she requested the head

> > > nurse to call me to

> > > find out when I was visiting. Only after that 4-6

> > > weeks timeframe

> > > will you know if what she's experiencing right now

> > > is medication

> > > related or LBD related. I feel your frustration

> > and

> > > am right there

> > > with you in regards to feeling the guilt - but

> > > remember it's 'false

> > > guilt' - we aren't the experts - we don't have a

> > > looking glass that

> > > can foresee what our decisions will do for our LOs

> > -

> > > but whatever

> > > decisions we did make were made out of LOVE and we

> > > can't feel guilty

> > > for LOVING our LOs.

> > >

> > > ; loving daughter of Maureen of Boston,

> > MA;

> > > finally diagnosed

> > > with LBD on 2/06 after also being diagnosed with

> > > everything from AD

> > > to Vascular Dementia caused by mini strokes to

> > > Binswengers...; was

> > > victim to rapid progression from Risperidone (or

> > > combination of

> > > Risperidone with other drugs OR possibly received

> > > another " bad drug "

> > > when she was observed/tested in a hospital in

> > > 10/05); in a NH since

> > > 11/05.

> > >

> > > PS I hear you about that puree food - what these

> > > caretakers do in the

> > > NH can certainly turn my stomach. This one

> > resident

> > > is asleep ALL the

> > > time - and they still feed her - when she's

> > snoring.

> > > One of the aides

> > > would make up these concoctions for my mother -

> > pour

> > > milk into a

> > > glass, stir in mashed potatoes, butter, sugar,

> > > squash, and have my

> > > mother swallow it - wanted to puke everytime I

> > > watched it! But it

> > > worked - she was instrumental in getting my mother

> > > to gain weight -

> > > and at least she'd end the 'meal' with ice

> > cream...

> > >

> > >

> > >

> > > >

> > > > Hi Everyone

> > > >

> > > > I have just finished reading many days worth of

> > > posts.

> > > > I have been away from my computer for quite a

> > > while

> > > > and just wanted to bring you up to date on my

> > mom.

> > > >

> > > > My Mom was moved to the NH two weeks ago today.

> > > She is

> > > > actually eating pretty well now. They are giving

> > > her

> > > > puree foods which are really hard for me to

> > > stomach,

> > > > yet I have been feeding her as much as she will

> > > eat.

> > > > She still does not like to drink much which is a

> > > > problem.

> > > >

> > > > The Hospice nurse believes she may have a UTI,

> > but

> > > no

> > > > test was done. She is however, being treated for

> > > an

> > > > infection. She has a catheter now also.

> > > >

> > > > I have read all the posts about lying and I

> > > started

> > > > out trying to always tell the truth and be

> > honest

> > > with

> > > > my mom. However, it would upset her and she

> > would

> > > cry

> > > > and get agitated, so I began to lie to her. But

> > I

> > > soon

> > > > realized I was not lying to her, just going

> > along

> > > with

> > > > her hallucination. She would ask me how old the

> > > > children were, when no one was home, but myself

> > > and

> > > > her and I would say 5 and 7. That would satisfy

> > > her.

> > > > It was so much easier for us both and I got over

> > > the

> > > > fact that I felt like I was lying to my mother

> > and

> > > she

> > > > would find out and be mad at me. She never knew

> > > and it

> > > > made life much, much easier for us all.

> > > >

> > > > Now, I just wish I had one of those days back.

> > My

> > > > mother no longer responds to 98% of what you say

> > > to

> > > > her. She once in a blue moon will say Hello, if

> > > you

> > > > say hello first, but mostly she does not even

> > make

> > > eye

> > > > contact with me. I have not noticed others

> > saying

> > > that

> > > > this is what has happened to their LO's. It

> > makes

> > > me

> > > > think that being on the Risperdal for months has

> > > just

> > > > destroyed her brain. She is practically a

> > > vegetable

> > > > now. Her only response is to pain. I sit at the

> > NH

> > > for

> > > > hours and get nothing from her all day long. I

> > > battle

> > > > in my own head about not stopping the

> > medications

> > > > sooner. What do the rest of you think? Could

> > this

> > > be

> > > > medication or is it just the progression of the

> > > > insidious disease. She is in the forever end

> >

> === message truncated ===

>

>

> __________________________________________________

>