Re: This Cruel Disease

[Guest guest]

DENA I 'M GLAD YOU SHARED THE SITUATION WITH YOUR LO BECAUSE SOMEITMES WE FEEL

LIKE WE'RE ALONE YOUR MOM SOUNDS LIKE SHE'S ONE OF MY MOM'S LEWY FRIENDS.

SOUNDS AS IF THEY'RE IN THE SAME PLACE.. I AM HAVING A HARD TIME GIVING MAMA

PILLS AT THIS POINT AND WILL HAVE TO CRUSH THEM UP INTO HER FOOD. MAMA ON THE

RESPERDOL AND WHAT IS THE CLONZAPAM FOR? I WANT MY MOM BACK SO BAD BUT I ACCEPT

THE FACT SHE IS NOT COMING BACK I PRAY FOR HER PEACE WITH GOD I CONTINUE TO ASK

HER TO PRAY AND I PRAY WITH HER SOMETIMES. I DON'T HAVE CHILDREN SO I DON'T KNOW

HOW TO TAKE THE GIBBERISH AT TIMES BUT I 'M LEARNING ALOT. GOD PROVIDES AND

LOVES US THROUGH. MY PRAYERS AND SPIRIT IS WITH U MIDGE

Dena LEAVITT wrote: Hi Stevie

I so agree with you. Drugs can be a problem in the

later stages especially. I have now taken my mom off

of Aricept and I am slowing removing the Namenda now

also. She is fairly content as far as I can tell. She

is in her own world now. Happy to fiddle with her

blanket and chatter to her " Lewy Friends " She still

takes the Risperadol and Clonzapam, but I will be

taking her off of those next. As someone so wisely put

it, I am just caring for the shell now. My mom is no

longer the person I loved my whole life, but I am just

caring for the body waiting to be taken to heaven. 90%

of what she says is gibberish. And there are times

when she really wants to tell me something, but it

will come out totally weird like, The compass is

luring in the chest. I have not a clue what she said,

but I just try to look interested and like I care as I

did when my kids were little and just needed my

attention, but didn't have the verbal skills to tell

me what they needed. It is the saddest thing to live

with, as you ALL know. Oh where have you gone mother?

I do wish for her to return to me, but even more I

wish her peace and to be content where she is now. I

agree that this disease if of the devil. I would so

much rather have a disease that I knew there was an

end in sight than this waiting game. My father died of

cancer in 1991. It was awful, but this seems even more

cruel. We need to all band together and pray that we

do not get this disease and that a brillant pioneer in

the field comes along and cures this debilitating

monster. My thoughts are with you Stevie and your

Uncle as he recovers. He may not bounce totally back,

but it is so great that he is on his way. Drugs are

like a blessing and a curse at the same time. I think

they work wonders in the beginning and middle, but

towards the end they just don't do much good. Take

care and know I am think about you.

Dena

__________________________________________________

[Guest guest]

Hi Midge

Clonzapam is for anxiety. Sometimes it works,

sometimes it doesn't. The doctor just tells me to

increase it when need be, however, when I do, she

becomes a member of the walking dead club, so I do not

do that any more. I am not use to changing drugs as

need be either. I do not take anything expect an

antibiotic when need be. And that has been years since

I needed one. So adjusting meds seems wrong to me

somehow. But having said that I am learning to do just

that. I think she will be happier when she is given

less drugs, but I may be wrong and will have to start

them again. Time will tell I guess. Thank you for your

thoughts and prayers Midge. May God continue his good

work in you.

Dena

--- MIDGE GREER wrote:

> DENA I 'M GLAD YOU SHARED THE SITUATION WITH YOUR LO

> BECAUSE SOMEITMES WE FEEL LIKE WE'RE ALONE YOUR MOM

> SOUNDS LIKE SHE'S ONE OF MY MOM'S LEWY FRIENDS.

> SOUNDS AS IF THEY'RE IN THE SAME PLACE.. I AM HAVING

> A HARD TIME GIVING MAMA PILLS AT THIS POINT AND WILL

> HAVE TO CRUSH THEM UP INTO HER FOOD. MAMA ON THE

> RESPERDOL AND WHAT IS THE CLONZAPAM FOR? I WANT MY

> MOM BACK SO BAD BUT I ACCEPT THE FACT SHE IS NOT

> COMING BACK I PRAY FOR HER PEACE WITH GOD I

> CONTINUE TO ASK HER TO PRAY AND I PRAY WITH HER

> SOMETIMES. I DON'T HAVE CHILDREN SO I DON'T KNOW HOW

> TO TAKE THE GIBBERISH AT TIMES BUT I 'M LEARNING

> ALOT. GOD PROVIDES AND LOVES US THROUGH. MY

> PRAYERS AND SPIRIT IS WITH U MIDGE

>

> Dena LEAVITT wrote: Hi

> Stevie

>

> I so agree with you. Drugs can be a problem in the

> later stages especially. I have now taken my mom off

> of Aricept and I am slowing removing the Namenda now

> also. She is fairly content as far as I can tell.

> She

> is in her own world now. Happy to fiddle with her

> blanket and chatter to her " Lewy Friends " She still

> takes the Risperadol and Clonzapam, but I will be

> taking her off of those next. As someone so wisely

> put

> it, I am just caring for the shell now. My mom is no

> longer the person I loved my whole life, but I am

> just

> caring for the body waiting to be taken to heaven.

> 90%

> of what she says is gibberish. And there are times

> when she really wants to tell me something, but it

> will come out totally weird like, The compass is

> luring in the chest. I have not a clue what she

> said,

> but I just try to look interested and like I care as

> I

> did when my kids were little and just needed my

> attention, but didn't have the verbal skills to tell

> me what they needed. It is the saddest thing to live

> with, as you ALL know. Oh where have you gone

> mother?

> I do wish for her to return to me, but even more I

> wish her peace and to be content where she is now. I

> agree that this disease if of the devil. I would so

> much rather have a disease that I knew there was an

> end in sight than this waiting game. My father died

> of

> cancer in 1991. It was awful, but this seems even

> more

> cruel. We need to all band together and pray that we

> do not get this disease and that a brillant pioneer

> in

> the field comes along and cures this debilitating

> monster. My thoughts are with you Stevie and your

> Uncle as he recovers. He may not bounce totally

> back,

> but it is so great that he is on his way. Drugs are

> like a blessing and a curse at the same time. I

> think

> they work wonders in the beginning and middle, but

> towards the end they just don't do much good. Take

> care and know I am think about you.

>

> Dena

>

> __________________________________________________

>

[Guest guest]

i had the dr put my mom on clonzapam it helps with alot of different things

i take it myself for restless leg syndrome which kept me up for yrs (not no

more) i have been on this med for approx 5 yrs we cut my moms dose in half

because she could not stay awake during the day the half helps alot at night

so she will sleep. so dont be affraid to try using a smaller amt. it does

help. on the other hand this disease sucks so bad that it is hard to find

the right drugs that help different people my mom is on seroqual and sinemet

on the clonzapam.. but her hallucinations/delusions suck she puts money

around house to pay off her hallucinations to go away which is sad. well

her doing that proves she was a italian philly girl. lol paying off people

even though they are not real the dr now wants her to see a shrink what is

up with that. she has good days and bad days she knows all her kids and

grandkids her conversations are

short because she loses focus fast. thank god there are five children to

help i had her here in fla from thanksgiving till xmas and my sisters in pa

are taking care of her now and sister in nj takes her alot on weekends. i

also have a sister in calif that comes for three weeks at a time and we do

have a nurse during the day that my mom loves. i am willing to go back to pa

after i handle all the headaches going on in my own household with my daughter

who was hit by a truck in aug and the bone is still not healed my mamagram

came back with a lump in left breast having a ultrasound tommorrow. and i

think i am premenapausal. oh joy so mom is tough for me right now to handle

well talk to u soon donnad

Dena LEAVITT wrote: Hi Midge

Clonzapam is for anxiety. Sometimes it works,

sometimes it doesn't. The doctor just tells me to

increase it when need be, however, when I do, she

becomes a member of the walking dead club, so I do not

do that any more. I am not use to changing drugs as

need be either. I do not take anything expect an

antibiotic when need be. And that has been years since

I needed one. So adjusting meds seems wrong to me

somehow. But having said that I am learning to do just

that. I think she will be happier when she is given

less drugs, but I may be wrong and will have to start

them again. Time will tell I guess. Thank you for your

thoughts and prayers Midge. May God continue his good

work in you.

Dena

--- MIDGE GREER wrote:

> DENA I 'M GLAD YOU SHARED THE SITUATION WITH YOUR LO

> BECAUSE SOMEITMES WE FEEL LIKE WE'RE ALONE YOUR MOM

> SOUNDS LIKE SHE'S ONE OF MY MOM'S LEWY FRIENDS.

> SOUNDS AS IF THEY'RE IN THE SAME PLACE.. I AM HAVING

> A HARD TIME GIVING MAMA PILLS AT THIS POINT AND WILL

> HAVE TO CRUSH THEM UP INTO HER FOOD. MAMA ON THE

> RESPERDOL AND WHAT IS THE CLONZAPAM FOR? I WANT MY

> MOM BACK SO BAD BUT I ACCEPT THE FACT SHE IS NOT

> COMING BACK I PRAY FOR HER PEACE WITH GOD I

> CONTINUE TO ASK HER TO PRAY AND I PRAY WITH HER

> SOMETIMES. I DON'T HAVE CHILDREN SO I DON'T KNOW HOW

> TO TAKE THE GIBBERISH AT TIMES BUT I 'M LEARNING

> ALOT. GOD PROVIDES AND LOVES US THROUGH. MY

> PRAYERS AND SPIRIT IS WITH U MIDGE

>

> Dena LEAVITT wrote: Hi

> Stevie

>

> I so agree with you. Drugs can be a problem in the

> later stages especially. I have now taken my mom off

> of Aricept and I am slowing removing the Namenda now

> also. She is fairly content as far as I can tell.

> She

> is in her own world now. Happy to fiddle with her

> blanket and chatter to her " Lewy Friends " She still

> takes the Risperadol and Clonzapam, but I will be

> taking her off of those next. As someone so wisely

> put

> it, I am just caring for the shell now. My mom is no

> longer the person I loved my whole life, but I am

> just

> caring for the body waiting to be taken to heaven.

> 90%

> of what she says is gibberish. And there are times

> when she really wants to tell me something, but it

> will come out totally weird like, The compass is

> luring in the chest. I have not a clue what she

> said,

> but I just try to look interested and like I care as

> I

> did when my kids were little and just needed my

> attention, but didn't have the verbal skills to tell

> me what they needed. It is the saddest thing to live

> with, as you ALL know. Oh where have you gone

> mother?

> I do wish for her to return to me, but even more I

> wish her peace and to be content where she is now. I

> agree that this disease if of the devil. I would so

> much rather have a disease that I knew there was an

> end in sight than this waiting game. My father died

> of

> cancer in 1991. It was awful, but this seems even

> more

> cruel. We need to all band together and pray that we

> do not get this disease and that a brillant pioneer

> in

> the field comes along and cures this debilitating

> monster. My thoughts are with you Stevie and your

> Uncle as he recovers. He may not bounce totally

> back,

> but it is so great that he is on his way. Drugs are

> like a blessing and a curse at the same time. I

> think

> they work wonders in the beginning and middle, but

> towards the end they just don't do much good. Take

> care and know I am think about you.

>

> Dena

>

> __________________________________________________

>

[Guest guest]

OMG, dancing for an hour an night?!?!? Extraordinary.

Bless you for taking such good care of your mother. Arlene

[Guest guest]

MY MOM IS NOW ON RESPERDOL AT NIGHT AND I GIVE HER A MELATONIN TO SLEEP THROUGH

THE NIGHT. SHE STILL GETS UP AND OUT OF HOSPITAL BED WHICH I JUST RECEIVED FROM

HOSPICE. THEY ARE BUYING HER MEDS NOW. SHE IS NOT EATING MUCH, PLAYING WITH HER

BLANKET, PICKING AT THE FLOOR, AND MUMBLING GIBBERISH MOST OF THE DAY. YESTERDAY

I PUT SOME MUSIC ON AND SHE GOT UP TO DANCE. SHE BEEN GOING TO SENIOR DANCES

FOR ABOUT 10 YEARS AND SHE STILL REMEMBERS EVERY STEP. SHE HAS ABOUT 1 HOUR AT

NIGHT THAT SHE DOES THIS. THE REST OF THE DAY IS ALMOST MOTIONLESS EXCEPT FOR

THE PICKING. SHE LOOKS LIKE SHE SEWING OR CLEANING. SHE DOESN'T KNOW WHO ANYONE

IS NOW. I HAVE A DAY SITTER AND I PERSONALLY AM HAVING A HARD TIME TRYING TO

WORK A FULL TIME JOB AND NOT FEEL TIRED OR QUILTY. I WANT TO BE THERE BECAUSE I

DON'T KNOW WHEN SHE WON;'T BE THERE ANYMORE. I WANT EVERY MOMENT I CAN GET WITH

HER. I MISS HER SO MUCH. I WANT MY MAMA BACK SO BAD. SHE ONLY BEEN LIKE THIS

AGBOUT 3 WEEKS. SINCE I TOOK HER TO THE

HOSPITAL AND THEY REMOVED HER MEDS (ARICEPT & NUMENDA & ZOLOFT) I CAN NOT

STAND WHAT I'M WATCHING HER GO THROUGH BUT SHE I HAPPIER IN GENEREAL OFF THE

MEDS AND NOT HAVING AS MANY SCARY HALUCINATIONS. BUT SHE LOOKS PEACEFUL AND I'M

SO EXTREMELY TIRED I NEED TO SLEEP FOR A FULL 24 HOURS AND I WISH I COULD CRY

WHICH I USUALLY CAN DO OCCASIONALLY BUT NOT NOW. I JUST WON'T COME. I'M

THINKING ABOOUT TAKING A LEAVE OF ABSENCE FOR THE TIME BEING I JUST CAN'T DECIDE

WHAT TO DO ABOUT ANYTHING I'M GLAD HOSPICE CAME IN TO MAKE SOME OF MY

DECISIONS. MY PRAYERS ARE WITH YAL TOO AND I'M GLAD YOU ALL SHARE WHAT'S GOING

ON WITH YAL. I 'M SO SORRRY WE HAVE TO GO THROUGH THESE THINGS BUT A LEAST WE'RE

TOGETHER IN PRAYERS AND THROUGH THIS WEB SITE. THANK YOU ALL FOR SHARING

MIDGE

juperant@... wrote: Dear Dena,

I don't even know if I responded to your email yet...it has been a bit

confusing around here getting the new CNA. He is working out pretty good so

far...taking over all of my morning duties and even making time to allow me to

actually go out of the house and run some errands.

My Uncle seems to have taken on a wild pack of dogs, and a gray and white

cat, that concerns him day and night and he wants me to take them to the Harbor

to live so they won't be in the way. His bed sores are worse and he will be

bed ridden now for at least half of the day. The only meds he is taking is

Hytrin to relieve pressure on his bladder so he can urinate.....which he barely

does any more.......and 2 timed release Sinemet's per day. I don't even know if

we will continue the Sinemet since he can no longer walk. (Decisions made

easier by reading all the posts here at Lewy headquarters.) The nightmares are

getting worse and I would hate to see him suffer any more than he does. Day

by day.

Very few travel down the road that we have chosen to ride on and I thank God

you all are here to give directions when we aren't certain which way to go. I

keep you all in my thoughts and prayers each day. Peace to us all, Stevie

* * * * * * * *

Hi Stevie

I so agree with you. Drugs can be a problem in the

later stages especially. I have now taken my mom off

of Aricept and I am slowing removing the Namenda now

also. She is fairly content as far as I can tell. She

is in her own world now. Happy to fiddle with her

blanket and chatter to her " Lewy Friends " She still

takes the Risperadol and Clonzapam, but I will be

taking her off of those next. As someone so wisely put

it, I am just caring for the shell now. My mom is no

longer the person I loved my whole life, but I am just

caring for the body waiting to be taken to heaven. 90%

of what she says is gibberish. And there are times

when she really wants to tell me something, but it

will come out totally weird like, The compass is

luring in the chest. I have not a clue what she said,

but I just try to look interested and like I care as I

did when my kids were little and just needed my

attention, but didn't have the verbal skills to tell

me what they needed. It is the saddest thing to live

with, as you ALL know. Oh where have you gone mother?

I do wish for her to return to me, but even more I

wish her peace and to be content where she is now. I

agree that this disease if of the devil. I would so

much rather have a disease that I knew there was an

end in sight than this waiting game. My father died of

cancer in 1991. It was awful, but this seems even more

cruel. We need to all band together and pray that we

do not get this disease and that a brillant pioneer in

the field comes along and cures this debilitating

monster. My thoughts are with you Stevie and your

Uncle as he recovers. He may not bounce totally back,

but it is so great that he is on his way. Drugs are

like a blessing and a curse at the same time. I think

they work wonders in the beginning and middle, but

towards the end they just don't do much good. Take

care and know I am think about you.

Dena

[Guest guest]

WE CAN ONLY DO THE BEST WE CAN THANKS GOD BLESS YOU HAPPY VALENTINE'S DAY

Zweibeers@... wrote:

OMG, dancing for an hour an night?!?!? Extraordinary.

Bless you for taking such good care of your mother. Arlene

[Guest guest]

Dear Midge

I really feel for you. I can tell that you are very

stressed. My mom is still on Risperdol. I believe it

is calming her hallucinations at night. But other

nights I do not think it does a thing. It really is

not a good drug for LBDers. My mom has been on it

since May 2005 and is very stiff, but is doing ok. It

does seem like torture at times just watching this day

by day. But God is with you as you walk this walk and

He is the one to give you strength and the courage to

make it through. Hang in there. We are all praying for

you.

Dena

--- MIDGE GREER wrote:

> MY MOM IS NOW ON RESPERDOL AT NIGHT AND I GIVE HER A

> MELATONIN TO SLEEP THROUGH THE NIGHT. SHE STILL

> GETS UP AND OUT OF HOSPITAL BED WHICH I JUST

> RECEIVED FROM HOSPICE. THEY ARE BUYING HER MEDS NOW.

> SHE IS NOT EATING MUCH, PLAYING WITH HER BLANKET,

> PICKING AT THE FLOOR, AND MUMBLING GIBBERISH MOST OF

> THE DAY. YESTERDAY I PUT SOME MUSIC ON AND SHE GOT

> UP TO DANCE. SHE BEEN GOING TO SENIOR DANCES FOR

> ABOUT 10 YEARS AND SHE STILL REMEMBERS EVERY STEP.

> SHE HAS ABOUT 1 HOUR AT NIGHT THAT SHE DOES THIS.

> THE REST OF THE DAY IS ALMOST MOTIONLESS EXCEPT FOR

> THE PICKING. SHE LOOKS LIKE SHE SEWING OR CLEANING.

> SHE DOESN'T KNOW WHO ANYONE IS NOW. I HAVE A DAY

> SITTER AND I PERSONALLY AM HAVING A HARD TIME TRYING

> TO WORK A FULL TIME JOB AND NOT FEEL TIRED OR

> QUILTY. I WANT TO BE THERE BECAUSE I DON'T KNOW

> WHEN SHE WON;'T BE THERE ANYMORE. I WANT EVERY

> MOMENT I CAN GET WITH HER. I MISS HER SO MUCH. I

> WANT MY MAMA BACK SO BAD. SHE ONLY BEEN LIKE THIS

> AGBOUT 3 WEEKS. SINCE I TOOK HER TO THE

> HOSPITAL AND THEY REMOVED HER MEDS (ARICEPT &

> NUMENDA & ZOLOFT) I CAN NOT STAND WHAT I'M WATCHING

> HER GO THROUGH BUT SHE I HAPPIER IN GENEREAL OFF THE

> MEDS AND NOT HAVING AS MANY SCARY HALUCINATIONS. BUT

> SHE LOOKS PEACEFUL AND I'M SO EXTREMELY TIRED I NEED

> TO SLEEP FOR A FULL 24 HOURS AND I WISH I COULD CRY

> WHICH I USUALLY CAN DO OCCASIONALLY BUT NOT NOW. I

> JUST WON'T COME. I'M THINKING ABOOUT TAKING A LEAVE

> OF ABSENCE FOR THE TIME BEING I JUST CAN'T DECIDE

> WHAT TO DO ABOUT ANYTHING I'M GLAD HOSPICE CAME IN

> TO MAKE SOME OF MY DECISIONS. MY PRAYERS ARE WITH

> YAL TOO AND I'M GLAD YOU ALL SHARE WHAT'S GOING ON

> WITH YAL. I 'M SO SORRRY WE HAVE TO GO THROUGH THESE

> THINGS BUT A LEAST WE'RE TOGETHER IN PRAYERS AND

> THROUGH THIS WEB SITE. THANK YOU ALL FOR SHARING

> MIDGE

>

> juperant@... wrote: Dear Dena,

>

> I don't even know if I responded to your email

> yet...it has been a bit

> confusing around here getting the new CNA. He is

> working out pretty good so

> far...taking over all of my morning duties and even

> making time to allow me to

> actually go out of the house and run some errands.

>

> My Uncle seems to have taken on a wild pack of dogs,

> and a gray and white

> cat, that concerns him day and night and he wants me

> to take them to the Harbor

> to live so they won't be in the way. His bed sores

> are worse and he will be

> bed ridden now for at least half of the day. The

> only meds he is taking is

> Hytrin to relieve pressure on his bladder so he can

> urinate.....which he barely

> does any more.......and 2 timed release Sinemet's

> per day. I don't even know if

> we will continue the Sinemet since he can no longer

> walk. (Decisions made

> easier by reading all the posts here at Lewy

> headquarters.) The nightmares are

> getting worse and I would hate to see him suffer any

> more than he does. Day

> by day.

>

> Very few travel down the road that we have chosen to

> ride on and I thank God

> you all are here to give directions when we aren't

> certain which way to go. I

> keep you all in my thoughts and prayers each day.

> Peace to us all, Stevie

>

> * * * * * * * *

> Hi Stevie

>

> I so agree with you. Drugs can be a problem in the

> later stages especially. I have now taken my mom off

> of Aricept and I am slowing removing the Namenda now

> also. She is fairly content as far as I can tell.

> She

> is in her own world now. Happy to fiddle with her

> blanket and chatter to her " Lewy Friends " She still

> takes the Risperadol and Clonzapam, but I will be

> taking her off of those next. As someone so wisely

> put

> it, I am just caring for the shell now. My mom is no

> longer the person I loved my whole life, but I am

> just

> caring for the body waiting to be taken to heaven.

> 90%

> of what she says is gibberish. And there are times

> when she really wants to tell me something, but it

> will come out totally weird like, The compass is

> luring in the chest. I have not a clue what she

> said,

> but I just try to look interested and like I care as

> I

> did when my kids were little and just needed my

> attention, but didn't have the verbal skills to tell

> me what they needed. It is the saddest thing to live

> with, as you ALL know. Oh where have you gone

> mother?

> I do wish for her to return to me, but even more I

> wish her peace and to be content where she is now. I

> agree that this disease if of the devil. I would so

> much rather have a disease that I knew there was an

> end in sight than this waiting game. My father died

> of

> cancer in 1991. It was awful, but this seems even

> more

> cruel. We need to all band together and pray that we

> do not get this disease and that a brillant pioneer

> in

> the field comes along and cures this debilitating

> monster. My thoughts are with you Stevie and your

> Uncle as he recovers. He may not bounce totally

> back,

> but it is so great that he is on his way. Drugs are

> like a blessing and a curse at the same time. I

> think

> they work wonders in the beginning and middle, but

> towards the end they just don't do much good. Take

> care and know I am think about you.

>

> Dena

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>

[Guest guest]

THANKS DENA

Dena LEAVITT wrote: Dear Midge

I really feel for you. I can tell that you are very

stressed. My mom is still on Risperdol. I believe it

is calming her hallucinations at night. But other

nights I do not think it does a thing. It really is

not a good drug for LBDers. My mom has been on it

since May 2005 and is very stiff, but is doing ok. It

does seem like torture at times just watching this day

by day. But God is with you as you walk this walk and

He is the one to give you strength and the courage to

make it through. Hang in there. We are all praying for

you.

Dena

--- MIDGE GREER wrote:

> MY MOM IS NOW ON RESPERDOL AT NIGHT AND I GIVE HER A

> MELATONIN TO SLEEP THROUGH THE NIGHT. SHE STILL

> GETS UP AND OUT OF HOSPITAL BED WHICH I JUST

> RECEIVED FROM HOSPICE. THEY ARE BUYING HER MEDS NOW.

> SHE IS NOT EATING MUCH, PLAYING WITH HER BLANKET,

> PICKING AT THE FLOOR, AND MUMBLING GIBBERISH MOST OF

> THE DAY. YESTERDAY I PUT SOME MUSIC ON AND SHE GOT

> UP TO DANCE. SHE BEEN GOING TO SENIOR DANCES FOR

> ABOUT 10 YEARS AND SHE STILL REMEMBERS EVERY STEP.

> SHE HAS ABOUT 1 HOUR AT NIGHT THAT SHE DOES THIS.

> THE REST OF THE DAY IS ALMOST MOTIONLESS EXCEPT FOR

> THE PICKING. SHE LOOKS LIKE SHE SEWING OR CLEANING.

> SHE DOESN'T KNOW WHO ANYONE IS NOW. I HAVE A DAY

> SITTER AND I PERSONALLY AM HAVING A HARD TIME TRYING

> TO WORK A FULL TIME JOB AND NOT FEEL TIRED OR

> QUILTY. I WANT TO BE THERE BECAUSE I DON'T KNOW

> WHEN SHE WON;'T BE THERE ANYMORE. I WANT EVERY

> MOMENT I CAN GET WITH HER. I MISS HER SO MUCH. I

> WANT MY MAMA BACK SO BAD. SHE ONLY BEEN LIKE THIS

> AGBOUT 3 WEEKS. SINCE I TOOK HER TO THE

> HOSPITAL AND THEY REMOVED HER MEDS (ARICEPT &

> NUMENDA & ZOLOFT) I CAN NOT STAND WHAT I'M WATCHING

> HER GO THROUGH BUT SHE I HAPPIER IN GENEREAL OFF THE

> MEDS AND NOT HAVING AS MANY SCARY HALUCINATIONS. BUT

> SHE LOOKS PEACEFUL AND I'M SO EXTREMELY TIRED I NEED

> TO SLEEP FOR A FULL 24 HOURS AND I WISH I COULD CRY

> WHICH I USUALLY CAN DO OCCASIONALLY BUT NOT NOW. I

> JUST WON'T COME. I'M THINKING ABOOUT TAKING A LEAVE

> OF ABSENCE FOR THE TIME BEING I JUST CAN'T DECIDE

> WHAT TO DO ABOUT ANYTHING I'M GLAD HOSPICE CAME IN

> TO MAKE SOME OF MY DECISIONS. MY PRAYERS ARE WITH

> YAL TOO AND I'M GLAD YOU ALL SHARE WHAT'S GOING ON

> WITH YAL. I 'M SO SORRRY WE HAVE TO GO THROUGH THESE

> THINGS BUT A LEAST WE'RE TOGETHER IN PRAYERS AND

> THROUGH THIS WEB SITE. THANK YOU ALL FOR SHARING

> MIDGE

>

> juperant@... wrote: Dear Dena,

>

> I don't even know if I responded to your email

> yet...it has been a bit

> confusing around here getting the new CNA. He is

> working out pretty good so

> far...taking over all of my morning duties and even

> making time to allow me to

> actually go out of the house and run some errands.

>

> My Uncle seems to have taken on a wild pack of dogs,

> and a gray and white

> cat, that concerns him day and night and he wants me

> to take them to the Harbor

> to live so they won't be in the way. His bed sores

> are worse and he will be

> bed ridden now for at least half of the day. The

> only meds he is taking is

> Hytrin to relieve pressure on his bladder so he can

> urinate.....which he barely

> does any more.......and 2 timed release Sinemet's

> per day. I don't even know if

> we will continue the Sinemet since he can no longer

> walk. (Decisions made

> easier by reading all the posts here at Lewy

> headquarters.) The nightmares are

> getting worse and I would hate to see him suffer any

> more than he does. Day

> by day.

>

> Very few travel down the road that we have chosen to

> ride on and I thank God

> you all are here to give directions when we aren't

> certain which way to go. I

> keep you all in my thoughts and prayers each day.

> Peace to us all, Stevie

>

> * * * * * * * *

> Hi Stevie

>

> I so agree with you. Drugs can be a problem in the

> later stages especially. I have now taken my mom off

> of Aricept and I am slowing removing the Namenda now

> also. She is fairly content as far as I can tell.

> She

> is in her own world now. Happy to fiddle with her

> blanket and chatter to her " Lewy Friends " She still

> takes the Risperadol and Clonzapam, but I will be

> taking her off of those next. As someone so wisely

> put

> it, I am just caring for the shell now. My mom is no

> longer the person I loved my whole life, but I am

> just

> caring for the body waiting to be taken to heaven.

> 90%

> of what she says is gibberish. And there are times

> when she really wants to tell me something, but it

> will come out totally weird like, The compass is

> luring in the chest. I have not a clue what she

> said,

> but I just try to look interested and like I care as

> I

> did when my kids were little and just needed my

> attention, but didn't have the verbal skills to tell

> me what they needed. It is the saddest thing to live

> with, as you ALL know. Oh where have you gone

> mother?

> I do wish for her to return to me, but even more I

> wish her peace and to be content where she is now. I

> agree that this disease if of the devil. I would so

> much rather have a disease that I knew there was an

> end in sight than this waiting game. My father died

> of

> cancer in 1991. It was awful, but this seems even

> more

> cruel. We need to all band together and pray that we

> do not get this disease and that a brillant pioneer

> in

> the field comes along and cures this debilitating

> monster. My thoughts are with you Stevie and your

> Uncle as he recovers. He may not bounce totally

> back,

> but it is so great that he is on his way. Drugs are

> like a blessing and a curse at the same time. I

> think

> they work wonders in the beginning and middle, but

> towards the end they just don't do much good. Take

> care and know I am think about you.

>

> Dena

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>

[Guest guest]

My thoughts & prayers are with you & your mom. Music is wonderful -

isn't it? It's amazing that she gets that moment to DANCE!

[Guest guest]

THANK YOU AND SAME HERE PRAYERS FOR YOU AND YOURS MIDGE

octoryrose wrote: My thoughts & prayers are with you &

your mom. Music is wonderful -

isn't it? It's amazing that she gets that moment to DANCE!

Welcome to LBDcaregivers.