Re: update on my mom/ lying/

[Guest guest]

Hi ,

Although wandering is typical with some people with

dementia, this is one more thing to think about.

Before my husband's Parkinsonism became so bad, he can

not walk without support and assistance now, he was

diagnosed with Restless Legs Syndrome. He could not

sit or lay down for long, because as soon as his body

was at rest, his legs would start to bother him. He

explained it as worms crawling inside his legs. I

could not see anything like tics or tremors of his

legs from the outside, it was on the inside of his

legs that he felt it. When he was in motion, like

walking all those feelings in his legs went away, so

he would walk around and around all day long so the

feelings would stay away. If your mom can not

communicate to you, this may be what is happening.

Restless Legs Syndrome can be a symptome of LBD.

Requip is one of the medications for Restless Legs

Syndrome. Go to: http://www.requip.com

--- 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 Jan,

What you wrote reminded me of my mother's initial discomfort prior to her

" Parkinsons "

diagnosis. She said she felt extremely uncomfortable, like she was tremoring

inside,

nothing noted outside except for obvious tremoring at rest with her right arm.

MANY

years ago!

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give

up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

> > >

> > > > 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 visited my mother last night (and she's still doing really well)

but her legs were back to being very restless (up/down/up/down) - I'm

going to plan on attending one of mom's visit with the NH doctors

(they make rounds every Wed. but there's an additional doctor who

comes every other week so I'll go when they're all there). I'm going

to bring up this up/down/up/down motion with my mother. My first

instinct is that it's RLS (she's in a wheelchair so she can't walk it

off). I'd hate to think that she has such an annoying pain/discomfort

in her legs. Another person said that maybe it isn't RLS that it's

just involuntary movement.

; 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.

> > > > >

> > > > > > 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

> >

> === message truncated ===

>

>

> __________________________________________________

>