hello

June 8, 1999

Hi ,

Yes, I can imagine that you have a lot of questions. These surgeries are

scarey. I just had my second and third in NOvember and December. My first

surgery 8 years ago didn't do what I'd hoped. For 7 years I just believed

that I'd have to just live or learn to live the way I was. WHich wasn't

fun!!!!! I am glad to say that my recent surgeries have really made a

difference. I'm battling headaches right now but I think they'll stop soon.

I feel really good...I have four young children and keep up with them pretty

good. I still have limits...I know them...and I try not to exceed them.

That makes a big difference in how I feel. As for going back to work...yep

no problem just don't rush it because it'll just set you back and take a lot

longer to heal!!!

You'll have a whole group with you now!!!!

You're not alone!

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

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- Simplifying group communications

June 8, 1999

,

Hi! I have found the emails from this group are wonderfully informative! I was

diagnosed while in Europe (where I work) and felt very much alone. However, the

internet is full of great information for you. I would recommend the following

for the BEST use of your time:

* Chip's pages of success stories put me at eaze!

* Chip's web pages are just super and his links are good, too!

* Chiari.com has some articles/ information that is great basic

information and I printed out everything that I read. I took it to the

neurosurgeons with me. I saw two excellent neurosurgeons---2nd opinions are

highly recommended by Chip, et. al.

* I did various internet searches, but the links at both Chip and

chiari/WACMA websites are the best!

Welcome to the club-if it really is one. My surgery is June 14th at UVA. I am

looking forward to feeling better!

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

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June 8, 1999

,

Hi! I have found the emails from this group are wonderfully informative! I was

diagnosed while in Europe (where I work) and felt very much alone. However, the

internet is full of great information for you. I would recommend the following

for the BEST use of your time:

* Chip's pages of success stories put me at eaze!

* Chip's web pages are just super and his links are good, too!

* Chiari.com has some articles/ information that is great basic

information and I printed out everything that I read. I took it to the

neurosurgeons with me. I saw two excellent neurosurgeons---2nd opinions are

highly recommended by Chip, et. al.

* I did various internet searches, but the links at both Chip and

chiari/WACMA websites are the best!

Welcome to the club-if it really is one. My surgery is June 14th at UVA. I am

looking forward to feeling better!

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

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- Simplifying group communications

June 8, 1999

Hi . I'm Carla. I have been in this group for three months,

though I had my decompression three years ago. I am currently having

difficulties, though my nsg (neurosurgeon) is leaning towards injury

being my current culprit. Here are a couple of pieces of advice from

a pro.

1) surgery is survivable, painful, but they have good drugs to help

with that. My scar is a nice thin line down the back of my neck, most

people don't really pay attention to it, if I let my hair grow

longer, they don't notice. I, however, usually wear a wedge cut with

pride, and figure I've earned that scar. Let 'em wonder.

2) recovery varies- typically 2-4 months for the worst of the

headaches to go away, 6-12 months for full recovery of strength and

neck motion.

3) work - take AT LEAST three weeks, I went back three weeks later,

and I was considered the exception, and I still felt it was too soon.

Six to eight weeks is more reasonable, longer if your job is

physically stressful.

4) future - AVOID things that will cause you further problems like

trauma to the head. While it is impossible to live in a bubble,

things like amusement park rides are not advisable (I learned the

hard way).

Another thing to avoid is car accidents, though how to avoid them, I

don't know.

5) support - you have come to the right place for support. These

people are angels.

Carla

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

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November 29, 2005

Dear Robin,

Welcome to the group! Glad to have you aboard!

You can learn a great deal about alternative MS treatments by visiting

http://i.webring.com/hub?ring=multiplescleros1

With best wishes,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

November 30, 2005

robin..

Hi...I have been getting mail from the group for a few months.....The title

seemed interesting...This group will discourage anything but natural

treatments.........Don't give up Robin.........Try www.joolysjoint.com for ms

chat. etc.........

November 30, 2005

I just read this post I sent and it sounded negative!!!! .......I have learned

good things here.....i also found a website good for communicating with others

with MS and the address was www.Joolysjoint.com this group got me off Baclofen

though.............Yeah!!!...I just wanted Robin to know that this group

promotes natural helpers.....I was dissapointed after joining....but keep

getting mails because who knows what good can come???

February 10, 2008

Welcome to Lewyville!

We are a wonderful place to vent, as well as have your questions

answered.

Probably all of us have had the night you had last night. We

understand, and know how much you might have loved to have yelled,

but didn't. I think that is where much of the caregiver builds their

stress levels.

Find out what is working for some in terms of keeping the LO in

nights and days. there will be a plethora of answers, I am sure.

I am mostly on the question side of this disease, but can give you

empathy all day long.

hang in, and vent often!

Carol

If you throw yourself a pity party, most of us will show up! We love

to party!

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

February 10, 2008

P.S. We often figure out a little late that they are not faking it.

it is where they are on the Lewy Body Trail, and they don't always

leave a trail of bread crumbs.

Carol

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

February 10, 2008

Oh, Holly..... You've come to there right place. Rest assured that your

grandma is not doing these things on purpose and is not trying to fool you.

I know you will find much support and knowledge here. My daughter helps me

care for my mother and I hope she'll come out and introduce herself to you.

Gladys

-- Hello

My name is Holly, my grandmother was diagnosid with LBD last week.

Before thaat I had never heard of it. She's a tough cookie....and she

wearing both my mother and I out. Last night was rough...she kept

haloring out our names every 15 minutes...this started at 10pm and went

on till 4:30 am. At times she would get stuck in the bed rails trying

to wander out at night, she instead in taking a shower at 0100 in the

morning. I work 12 hour shifts and get up to work at 5 am. At times I

wanted to yell at her...but I didn't.

Sometimes she's ok ...mentally alert and can converse well with us.

Then there are nightd that she is soooo stuborn, lost in her time ( by

that I mean she'll ask me if I fed the pigs? ...we have no pigs) then

there are days that she takes of her diapers and runs around the house

naked....

My mother sometimes thinks that she makes things up or trying to fool

us...

I am confused, frusterated and stressed.....

Welcome to LBDcaregivers.

February 10, 2008

Hello Holly,

My name is Ruthie. (I'm Gladys' daughter) I also help my mother take

care of my Grandmother.

I can completely understand you wanting to yell. I was feeling that

way myself today. I couldn't even figure out why she was mad but I

was trying to help and she just started getting incredibly mad at me

and throwing (for a person who does not know she has LBD or the

symptoms would view as) a full blown temper tantrum.

One night while I was here I did not sleep a bit because she was

convinced the house was on fire and I had to keep her from calling

the fire department.

If you ever need someone to talk to who understands I am here and I

know the wonderful people on this list are as well. It is good to get

it out and also to know that you're not a lone.

Ruthie

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

February 10, 2008

I understand frustration with LO's. Just remember, though, that they have no

control and the disease is the one controlling when things happen.

This has been a really hard week for our family. Dad (primary caregiver, age

84) got up during the evening to check on something and he fell. When he fell,

my mother came to a little, decided to get out of her bed and help him. She

fell. Dad crawled to the phone and called 911, and then lost consciousness.

EMSA came and took them both to the hospital, didn't call any of us, and we

didn't find out until almost 8 hours later that they were in hospital. They

kept them overnight for observation, and I had to miss three more days of work

last week in addition to the 5 that I missed the end of the week before and the

first of last week. My sister and I are both jeopardizing our jobs trying to

take care of things.

My dad refuses to accept even the IDEA of an NH. He is supported in that

feeling by my two brothers, neither of whom are accepting any responsibility for

Mom's care. My sister and I are worn to a frazzle.

Mom is quickly going downhill. I don't know the progression of the disease,

but it's my feeling that she's probably in the final stages. She eats no more

than two or three spoonfuls of food per day, and often spits that out. She

drinks less than a cup of water a day. She either sleeps or pulls the covers

over her head and doesn't talk to anyone for probably 23 hours and 55 minutes of

each day.

As a family, we're opposed to feeding tubes or artificial hydration to prolong

her life. She is in a living hell right now, having hallucinations and seeing

things. Tonight she looked straight at me, and said, " Are you satan? " She

knows my name, but she calls me by my entire name, and has no memory or

connection that we are mother and daughter. She refuses to take anything from

my hands, and my father is the only one who can give her the meds or even a

drink of water.

She used the portable commode and then kept checking to make sure my father

flushed it. I asked her what made her think we wouldn't flush it...what did she

think we were going to do with it. Her response was, " Feed it back to me. "

Last Saturday, she grabbed my sister's hand, and asked her if she was saved.

My sister said, " Of course, Mom. You were there at my baptism. " That wasn't

sufficient...my sister had to repeat a prayer for her salvation, and ask

forgiveness for all acts of adultery and fornication! I was standing in the

kitchen laughing my head off...when she came into the kitchen, she said, " Well,

at least it was short...if it'd been YOU, you'd still be asking forgiveness... "

At times, I feel guilty for laughing at some of the things that go on, but

then I realized that my laughter was a cover for the pain. It hurts. I know

that Mom's time is limited, and I still count each moment as precious.

Jannis

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

Never miss a thing. Make Yahoo your homepage.

February 10, 2008

(((HUGS)))) Jannis My heart and prayers go out to you.

Gladys

-- Re: Hello

I understand frustration with LO's. Just remember, though, that they have

no control and the disease is the one controlling when things happen.

This has been a really hard week for our family. Dad (primary caregiver,

age 84) got up during the evening to check on something and he fell. When

he fell, my mother came to a little, decided to get out of her bed and help

him. She fell. Dad crawled to the phone and called 911, and then lost

consciousness. EMSA came and took them both to the hospital, didn't call

any of us, and we didn't find out until almost 8 hours later that they were

in hospital. They kept them overnight for observation, and I had to miss

three more days of work last week in addition to the 5 that I missed the end

of the week before and the first of last week. My sister and I are both

jeopardizing our jobs trying to take care of things.

My dad refuses to accept even the IDEA of an NH. He is supported in that

feeling by my two brothers, neither of whom are accepting any responsibility

for Mom's care. My sister and I are worn to a frazzle.

Mom is quickly going downhill. I don't know the progression of the

disease, but it's my feeling that she's probably in the final stages. She

eats no more than two or three spoonfuls of food per day, and often spits

that out. She drinks less than a cup of water a day. She either sleeps or

pulls the covers over her head and doesn't talk to anyone for probably 23

hours and 55 minutes of each day.

As a family, we're opposed to feeding tubes or artificial hydration to

prolong her life. She is in a living hell right now, having hallucinations

and seeing things. Tonight she looked straight at me, and said, " Are you

satan? " She knows my name, but she calls me by my entire name, and has no

memory or connection that we are mother and daughter. She refuses to take

anything from my hands, and my father is the only one who can give her the

meds or even a drink of water.

She used the portable commode and then kept checking to make sure my

father flushed it. I asked her what made her think we wouldn't flush it..

what did she think we were going to do with it. Her response was, " Feed it

back to me. "

Last Saturday, she grabbed my sister's hand, and asked her if she was

saved. My sister said, " Of course, Mom. You were there at my baptism. "

That wasn't sufficient...my sister had to repeat a prayer for her salvation,

and ask forgiveness for all acts of adultery and fornication! I was

standing in the kitchen laughing my head off...when she came into the

kitchen, she said, " Well, at least it was short...if it'd been YOU, you'd

still be asking forgiveness... "

At times, I feel guilty for laughing at some of the things that go on, but

then I realized that my laughter was a cover for the pain. It hurts. I

know that Mom's time is limited, and I still count each moment as precious.

Jannis

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

Never miss a thing. Make Yahoo your homepage.

February 10, 2008

Holly,

Welcome,

You may not have heard of LBD before, but it sure sounds like you are living it.

My Mom was up every other night for 3 years. At times it seemed to me she knew,

but eventually I knew she wasn't faking.

If you go to the bottom of this email and find " Links " and " Lists " you will find

out lots of information about LBD that we have collected. Many times Mom was

given Meds that just didn't work. The MDs are just starting to diagnosis it,

much less understand the Meds. My Mom was one who just couldn't do meds as they

made her worse, not better. At one point I was cutting an anti-anxiety pill in

quarters and giving her quarter of a pill all day. It worked fine. Other than

that I was fighting with MDs all the time to take her off drugs.

Check out what meds she is on and how much, and we can help you know which might

be a problem. Most MDs use to much and to fast. And it makes things worse.

Also, when Mom got upset, the MD that finally worked with me, always said,

" Bring her in and we will check for UTI.. (Urinary. Track. Infection) And she

always had one. And I would forget the next time. But we would do it all over

again. I just always tried to remember, " Mom is scared, what can I do to help

her fears. " The more fears I calmed, the easier time I had. (Not that I could

always do that either.)

Keep night lights on for her at night. Keep glaring glass covered, (it makes

for " lots of people " Mirrors, windows and pictures.

So you will learn to live with Lewy. And come here for that Pity Party that

Carol was talking about. Sometimes you just have to spout. You and your Mom

will hopefully find a way to trade nights if and when you need, so one of you

isn't up all the time.. There is an over the counter med called Melatonin that

I could give Mom with no bad effects. And even if she didn't sleep, she stayed

calm and in bed. You will learn to do whatever works.

Glad you are here.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Hello

My name is Holly, my grandmother was diagnosid with LBD last week.

Before thaat I had never heard of it. She's a tough cookie....and she

wearing both my mother and I out. Last night was rough...she kept

haloring out our names every 15 minutes...this started at 10pm and went

on till 4:30 am. At times she would get stuck in the bed rails trying

to wander out at night, she instead in taking a shower at 0100 in the

morning. I work 12 hour shifts and get up to work at 5 am. At times I

wanted to yell at her...but I didn't.

Sometimes she's ok ...mentally alert and can converse well with us.

Then there are nightd that she is soooo stuborn, lost in her time ( by

that I mean she'll ask me if I fed the pigs? ...we have no pigs) then

there are days that she takes of her diapers and runs around the house

naked....

My mother sometimes thinks that she makes things up or trying to fool

us...

I am confused, frusterated and stressed.....

February 11, 2008

Holly - I agree we Donna - your grandmother should be checked for a

UTI... Welcome to the board - glad you found us! Let us know what

meds your grandmother is on. The one document that should be referred

to like a 'Lewy-bible' Dr. Bradley Boeve's paper - read here:

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php

Other good reads are:

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://www.lewybodydementia.org/AR0504BFB.php

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the

most detailed, accurate information I've ever read about LBD. I think

it should be sent to all new caregivers AND doctors who aren't clear.

Thoughts everyone? " Keli says, " Definately yes!!! This is very

informative yet not overwhelming. It can easily be shared with

others. I intend to have my husband and children read it, and

hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/DS/00795.html

LBD Brochure

(to print use legal size paper)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

Live Chat Event with Dr. Gomperts, MD

Dr. Gomperts answered your questions on this Q & A session with Dr.

Gomperts, MD

http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

from Risperidone; Mom fell into the 50% category of those who could

not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

> Holly,

>

> Welcome,

>

> You may not have heard of LBD before, but it sure sounds like you

are living it. My Mom was up every other night for 3 years. At

times it seemed to me she knew, but eventually I knew she wasn't

faking.

>

> If you go to the bottom of this email and find " Links " and " Lists "

you will find out lots of information about LBD that we have

collected. Many times Mom was given Meds that just didn't work. The

MDs are just starting to diagnosis it, much less understand the

Meds. My Mom was one who just couldn't do meds as they made her

worse, not better. At one point I was cutting an anti-anxiety pill

in quarters and giving her quarter of a pill all day. It worked

fine. Other than that I was fighting with MDs all the time to take

her off drugs.

>

> Check out what meds she is on and how much, and we can help you

know which might be a problem. Most MDs use to much and to fast.

And it makes things worse.

>

> Also, when Mom got upset, the MD that finally worked with me,

always said, " Bring her in and we will check for UTI.. (Urinary.

Track. Infection) And she always had one. And I would forget the

next time. But we would do it all over again. I just always tried

to remember, " Mom is scared, what can I do to help her fears. " The

more fears I calmed, the easier time I had. (Not that I could always

do that either.)

>

> Keep night lights on for her at night. Keep glaring glass covered,

(it makes for " lots of people " Mirrors, windows and pictures.

>

> So you will learn to live with Lewy. And come here for that Pity

Party that Carol was talking about. Sometimes you just have to

spout. You and your Mom will hopefully find a way to trade nights if

and when you need, so one of you isn't up all the time.. There is an

over the counter med called Melatonin that I could give Mom with no

bad effects. And even if she didn't sleep, she stayed calm and in

bed. You will learn to do whatever works.

>

> Glad you are here.

>

> Hugs,

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years

and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other than mine.

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

February 11, 2008

Jannis -- I'm so sorry you are having to deal with so many tough

situations! How stressful for you & your sister! Is there a

possibility of some outside help by paid caregivers to be at home w/

your parents? Most definitely a Lifeline should be installed:

Lifeline

Lifeline can not only protect a life...it can preserve a cherished

way of life by giving seniors the confidence to continue living in

their own homes. A Lifeline medical alert costs little more than a

dollar a day, yet gives you peace of mind that is priceless.

http://www.lifelinesys.com/

Where do you live?

>

> I understand frustration with LO's. Just remember, though, that

they have no control and the disease is the one controlling when

things happen.

>

> This has been a really hard week for our family. Dad (primary

caregiver, age 84) got up during the evening to check on something

and he fell. When he fell, my mother came to a little, decided to

get out of her bed and help him. She fell. Dad crawled to the phone

and called 911, and then lost consciousness. EMSA came and took them

both to the hospital, didn't call any of us, and we didn't find out

until almost 8 hours later that they were in hospital. They kept

them overnight for observation, and I had to miss three more days of

work last week in addition to the 5 that I missed the end of the week

before and the first of last week. My sister and I are both

jeopardizing our jobs trying to take care of things.

>

> My dad refuses to accept even the IDEA of an NH. He is supported

in that feeling by my two brothers, neither of whom are accepting any

responsibility for Mom's care. My sister and I are worn to a

frazzle.

>

> Mom is quickly going downhill. I don't know the progression of

the disease, but it's my feeling that she's probably in the final

stages. She eats no more than two or three spoonfuls of food per

day, and often spits that out. She drinks less than a cup of water a

day. She either sleeps or pulls the covers over her head and doesn't

talk to anyone for probably 23 hours and 55 minutes of each day.

>

> As a family, we're opposed to feeding tubes or artificial

hydration to prolong her life. She is in a living hell right now,

having hallucinations and seeing things. Tonight she looked straight

at me, and said, " Are you satan? " She knows my name, but she calls

me by my entire name, and has no memory or connection that we are

mother and daughter. She refuses to take anything from my hands, and

my father is the only one who can give her the meds or even a drink

of water.

>

> She used the portable commode and then kept checking to make sure

my father flushed it. I asked her what made her think we wouldn't

flush it...what did she think we were going to do with it. Her

response was, " Feed it back to me. "

>

> Last Saturday, she grabbed my sister's hand, and asked her if she

was saved. My sister said, " Of course, Mom. You were there at my

baptism. " That wasn't sufficient...my sister had to repeat a prayer

for her salvation, and ask forgiveness for all acts of adultery and

fornication! I was standing in the kitchen laughing my head

off...when she came into the kitchen, she said, " Well, at least it

was short...if it'd been YOU, you'd still be asking forgiveness... "

>

> At times, I feel guilty for laughing at some of the things that

go on, but then I realized that my laughter was a cover for the

pain. It hurts. I know that Mom's time is limited, and I still

count each moment as precious.

>

> Jannis

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

February 11, 2008

Oh Jannis,

You've got me laughing up here in Toronto! That was a good comeback from your

sister. Please don't feel badly about the laughing because its the LBD we

are laughing at. I don't know how I would have gotten through being a hands on

caregiver to mom if not for the laughter. Sometimes, mom and I would laugh

together after she had done or said something Lewy.

I'm sorry to hear that your brothers are not being helpful and supportive (so

many of us here have siblings who are just the same). If they can't or won't

help the least they can do is stay out of the way. Is it possible to have

in-home care for your mom and dad? Only after my mom went into care did we get

her a personal caregiver and we could have kicked ourselves for not doing it

earlier. I do hope your dad is open to the idea.

I so agree with you that every moment we have with our LO's is precious.

Watching them decline is so very difficult for us but it must be even harder on

them. What I wouldn't give to hear to mom's voice today.

Courage

Re: Hello

I understand frustration with LO's. Just remember, though, that they have no

control and the disease is the one controlling when things happen.

This has been a really hard week for our family. Dad (primary caregiver, age

84) got up during the evening to check on something and he fell. When he fell,

my mother came to a little, decided to get out of her bed and help him. She

fell. Dad crawled to the phone and called 911, and then lost consciousness. EMSA

came and took them both to the hospital, didn't call any of us, and we didn't

find out until almost 8 hours later that they were in hospital. They kept them

overnight for observation, and I had to miss three more days of work last week

in addition to the 5 that I missed the end of the week before and the first of

last week. My sister and I are both jeopardizing our jobs trying to take care of

things.

My dad refuses to accept even the IDEA of an NH. He is supported in that

feeling by my two brothers, neither of whom are accepting any responsibility for

Mom's care. My sister and I are worn to a frazzle.

Mom is quickly going downhill. I don't know the progression of the disease,

but it's my feeling that she's probably in the final stages. She eats no more

than two or three spoonfuls of food per day, and often spits that out. She

drinks less than a cup of water a day. She either sleeps or pulls the covers

over her head and doesn't talk to anyone for probably 23 hours and 55 minutes of

each day.

As a family, we're opposed to feeding tubes or artificial hydration to prolong

her life. She is in a living hell right now, having hallucinations and seeing

things. Tonight she looked straight at me, and said, " Are you satan? " She knows

my name, but she calls me by my entire name, and has no memory or connection

that we are mother and daughter. She refuses to take anything from my hands, and

my father is the only one who can give her the meds or even a drink of water.