Re: New to group/Introduction

[Guest guest]

Oh you poor thing! Vallerie. I am sorry, but you have done the right thing

by coming here and pouring your heart out. Vent all you want. I have the same

helpless feeling at times. I too, have crying spells, and yet I bounce back

and enjoy joking too, So it will all balance out once in a while when you have

a place to vent.

We are here for each other. We are all going through the same thing. Some

have gone through it, and are great advisors of how to handle many situations.

Welcome to theList Vallerie. You will begin to feel loved and through that

you will have strength.

Love a bunch,

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 9/24/2006 5:52:46 PM Central Daylight Time,

vjedmonds@... writes:

My name is Vallerie and my mother has had Parkinson's Disease for over 35

years. She did pretty well for the first 30 years but things have been

progressively getting worst and worst the last five years. Three years ago she

had

the nurostimulators implanted which I think does help with some of the

Parkinson symptoms. She lives at home with my father, her main caretaker. I

live

about three miles away with my husband and two teenage sons. I am the main

source

of help for my dad and I take care of my mom daily. She has developed

dementia in the last year or so which has led me to this group. I think she may

have LBD although I don't know for sure. After reading over some of the links

that owner of this list supplied it has really made me wonder. Parkinson's

medication can also bring on some the same symptons such as the hellucinations.

However, my mother has had some episodes of losing consicousness here recently

and it is starting to make me wonder if it might be LBD

related. I must admit what I am reading is very grim and makes me want to

cry more than I normally do. I wanted to join a group of people who may have

some of the same feelings of helplessness and anger that I have. I don't wish

to always burden my husband or my kids or my close friends. I love my mother

and father dearly and would do anything for them but sometimes I feel pressed

when there are other things I want do. Sometimes I just want to stay home and

do stuff around my house and have fun with my kids but of course I have

responsiblities to do for my mom. THen I have hugh feelings of guilt. Also the

feelings of helplessness as I watch her lose it day by day. I know that someday

she won't be here but its the journey of her getting out of this life that

that is so disturbing. I try hard to be patient and loving always but I know

sometimes I get impatient with her when she says something bazzar. She has

pretty well lost most of her self care abilities and I do

her hair and makeup daily. She still likes to go places and I take her

shopping and I am always trying to think of things to keep her mind active. We

all

like to watch baseball and she can still talk ball.

I am praying that my dad and I can always care for her in their home but

sometimes I wonder. I can take her phyical decline more than the mental and

wonder how others deal with that. I will be anxious to learn for those going

down

the same road because I feel totally helpless and out of control to help my

mom. I take it day by day but like I said some days I just would like to put

my head in the sand.

SIgh, I didn't mean to just vent my spleen during my first message but I

guess its just all coming out. Like I said before I don't want to burden my

immediate family and close friends. I know I tend to tune a constant complainer

out after awhile and I don't want to be that.

Looking forward to meeting some online support.

Vallerie

Ohio

[Guest guest]

Hi

This IS the place to vent, scream, cry, laugh and get valuable info. I am

sorry you had to find us but glad you did. There is so much info to be gotten

here on LBD.

My Mom was the one who had it and the road is a very hard one but with the

support of this group it was made a little easier. This is the place to get

suggestions on how to handle problems as they arise. This is the best group of

caregivers you will ever meet.

On the bottom of some of the replies you will see links to the home page.

From there you will be able to find out about anything you may need or want to

know about this awful disease.

So Vent all you want, we understand. There will be times when you will smile

or laugh at something that happened and we would like you to share that

also. We are here to pull for you.

Hugs

Jacqui from So Florida

[Guest guest]

Dear Vallerie, You have come to a good place! This is definitely a safe spot to

vent, cry, scream, pray and get lots of help. And you'll find you are of help to

the rest of us, too! It's a place to share where everyoneelse understands what

these various diseases mean to our loved ones, the rest of our families, and to

us.

Your story of caregiving is so touching. Your love and compassion for your

folks just shines through. All of us are entitled to absolutely hate PD, LBD and

anything else that affects us and those we love. I think you'll see here that

many of us put our heads into " the sand " from time to time. It is so normal to

resent disease and how it robs our loved ones and of us of " normal " time and

activities. I'm learning at this forum that whatever helps us keep sane and

centered - even tiime off now and then - is important. " Caregivers must care for

themselves, too " is a cliche because it's so true. Feeling guilty is also

normal, but pleae take care of yourself anyway. You're bound to feel hopeless at

times. We all do. Everything you describe is absolutely normal - and acceptable

- and it makes you human - not bad, not unloving - just human.

I also struggle with helping my mom on this stretch of her journey. She is not

going to get " better. " But I do want her to be safe, at peace as much as

possible, and to have some quality of life.And you obviously want those things

for your mom. I pray that along with what you're feeling now, you can also see

yourself as a fine daughter, wife and mom. It's hard to recognize sometimes, in

the middle of the endless cycle of caregiving and the list of " to do " things

that never ends. But everybody here, reading your story, would agree that

you're a heroine! And just come visit here whenever you need to be reminded

what a great gift you are giving your folks - and a legacy to your kids, too.

On the practical side, what does your mom's MD think about the possibility of

LBD? I'm asking because my mom, who's 78, was diagnosed first with PD, and only

later with LBD. Her first couple MDs just called it dementia. But she definitely

has LBD, and her current MD says this losing consciousness thing can be related

to PD, LBD or both. It can also be caused by other cardiovascular problems,

infection, or a couple of other problems. Do get it checked out, so you can know

what treatments might be possible.

And it's also important to get a clear diagnosis because some of the dementia

meds that work well for people with dementias of the Alzheimer's type can be

dangerous for those with LBD. You've probably already found the Lewy Body

Disease Association website, but if not, check out the articles about safe

medications.

And pleae write when you can - we are interested in each other here, and we

will want to know how all in your family - and you - are doing.

Peace, Lin

Vallerie Edmonds wrote:

My name is Vallerie and my mother has had Parkinson's Disease for over 35

years. She did pretty well for the first 30 years but things have been

progressively getting worst and worst the last five years. Three years ago she

had the nurostimulators implanted which I think does help with some of the

Parkinson symptoms. She lives at home with my father, her main caretaker. I live

about three miles away with my husband and two teenage sons. I am the main

source of help for my dad and I take care of my mom daily. She has developed

dementia in the last year or so which has led me to this group. I think she may

have LBD although I don't know for sure. After reading over some of the links

that owner of this list supplied it has really made me wonder. Parkinson's

medication can also bring on some the same symptons such as the hellucinations.

However, my mother has had some episodes of losing consicousness here recently

and it is starting to make me wonder if it might be LBD

related. I must admit what I am reading is very grim and makes me want to cry

more than I normally do. I wanted to join a group of people who may have some of

the same feelings of helplessness and anger that I have. I don't wish to always

burden my husband or my kids or my close friends. I love my mother and father

dearly and would do anything for them but sometimes I feel pressed when there

are other things I want do. Sometimes I just want to stay home and do stuff

around my house and have fun with my kids but of course I have responsiblities

to do for my mom. THen I have hugh feelings of guilt. Also the feelings of

helplessness as I watch her lose it day by day. I know that someday she won't be

here but its the journey of her getting out of this life that that is so

disturbing. I try hard to be patient and loving always but I know sometimes I

get impatient with her when she says something bazzar. She has pretty well lost

most of her self care abilities and I do

her hair and makeup daily. She still likes to go places and I take her shopping

and I am always trying to think of things to keep her mind active. We all like

to watch baseball and she can still talk ball.

I am praying that my dad and I can always care for her in their home but

sometimes I wonder. I can take her phyical decline more than the mental and

wonder how others deal with that. I will be anxious to learn for those going

down the same road because I feel totally helpless and out of control to help my

mom. I take it day by day but like I said some days I just would like to put my

head in the sand.

SIgh, I didn't mean to just vent my spleen during my first message but I guess

its just all coming out. Like I said before I don't want to burden my immediate

family and close friends. I know I tend to tune a constant complainer out after

awhile and I don't want to be that.

Looking forward to meeting some online support.

Vallerie

Ohio

[Guest guest]

Vallerie:

What a long time for your mother to have Parkinson's

and then to possibly have the diagnosis of LBD. I saw

J.Fox on a TV show the other night, and I

wondered what his future will be. I think he was

diagnosed Parkinson's in his 30s. I'm not sure if he

had the implant, but they did something for him.

You will find lots of information, help, and sympathy

with this group, so be sure to share your concerns and

things you notice about your mother. Everyone has a

different story, and the symptoms can vary widely, so

it's important that we get as much info as possible.

Nothing is too trivial not to be shared.

I'm sure most of us have times, sometimes many, that

we wished we could bury our heads in the sand, or

anything else to get away from this horrible disease

that robs our LOs of their very being. Hang in there,

and use this venue for a sounding board!

--- Vallerie Edmonds wrote:

> My name is Vallerie and my mother has had

> Parkinson's Disease for over 35 years. She did

> pretty well for the first 30 years but things have

> been progressively getting worst and worst the last

> five years. Three years ago she had the

> nurostimulators implanted which I think does help

> with some of the Parkinson symptoms. She lives at

> home with my father, her main caretaker. I live

> about three miles away with my husband and two

> teenage sons. I am the main source of help for my

> dad and I take care of my mom daily. She has

> developed dementia in the last year or so which has

> led me to this group. I think she may have LBD

> although I don't know for sure. After reading over

> some of the links that owner of this list supplied

> it has really made me wonder. Parkinson's

> medication can also bring on some the same symptons

> such as the hellucinations. However, my mother has

> had some episodes of losing consicousness here

> recently and it is starting to make me wonder if it

> might be LBD

> related. I must admit what I am reading is very

> grim and makes me want to cry more than I normally

> do. I wanted to join a group of people who may have

> some of the same feelings of helplessness and anger

> that I have. I don't wish to always burden my

> husband or my kids or my close friends. I love my

> mother and father dearly and would do anything for

> them but sometimes I feel pressed when there are

> other things I want do. Sometimes I just want to

> stay home and do stuff around my house and have fun

> with my kids but of course I have responsiblities to

> do for my mom. THen I have hugh feelings of guilt.

> Also the feelings of helplessness as I watch her

> lose it day by day. I know that someday she won't

> be here but its the journey of her getting out of

> this life that that is so disturbing. I try hard to

> be patient and loving always but I know sometimes I

> get impatient with her when she says something

> bazzar. She has pretty well lost most of her self

> care abilities and I do

> her hair and makeup daily. She still likes to go

> places and I take her shopping and I am always

> trying to think of things to keep her mind active.

> We all like to watch baseball and she can still talk

> ball.

> I am praying that my dad and I can always care for

> her in their home but sometimes I wonder. I can

> take her phyical decline more than the mental and

> wonder how others deal with that. I will be anxious

> to learn for those going down the same road because

> I feel totally helpless and out of control to help

> my mom. I take it day by day but like I said some

> days I just would like to put my head in the sand.

> SIgh, I didn't mean to just vent my spleen during my

> first message but I guess its just all coming out.

> Like I said before I don't want to burden my

> immediate family and close friends. I know I tend

> to tune a constant complainer out after awhile and I

> don't want to be that.

> Looking forward to meeting some online support.

> Vallerie

> Ohio

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________________________

[Guest guest]

Hello Vallerie and welcome,

I too am fairly new to this group and I will tell you the same thing

that someone else told me on my first message. I'm glad you have

found us but sorry that you had to. Always feel free to vent here.

We all have made or are making this journey. My father was dx with

LBD 23 days ago so I completely understand the many aspects of your

post...wanting to keep mom home, keeping her active, feeling guilty,

wanting to just spend time having fun with friends or family, crying

A LOT. In essence, feeling the weight of the world on your shoulders.

There is a differance between a person complaining and a person who

is hurting and needs a listening ear. Don't confuse the two. You

are not complaining, you are hurting and you need to get that out

for your own health. Your family and close friends (as well as the

people in this group) are exactly the people you should be able to

turn to. Do you have siblings near by that can help with mom's

care? Enlist them. Are friends offering help? Take it. It's

hard, I know. If you are a religous person turn to your church for

help. Take care of yourself. Get your rest, try to eat right,

accept help from others to give yourself a break. You cannot be of

any help to your mom and dad if you are over tired, over stressed

and malnurished. These things will only make you ill too. Be good

to yourself...pamper yourself. We woman expect way too much of

ourselves and it is in our nature to take care of others.

Prayers are with you,

Leah

>

> My name is Vallerie and my mother has had Parkinson's Disease for

over 35 years. She did pretty well for the first 30 years but

things have been progressively getting worst and worst the last five

years. Three years ago she had the nurostimulators implanted which

I think does help with some of the Parkinson symptoms. She lives at

home with my father, her main caretaker. I live about three miles

away with my husband and two teenage sons. I am the main source of

help for my dad and I take care of my mom daily. She has developed

dementia in the last year or so which has led me to this group. I

think she may have LBD although I don't know for sure. After

reading over some of the links that owner of this list supplied it

has really made me wonder. Parkinson's medication can also bring on

some the same symptons such as the hellucinations. However, my

mother has had some episodes of losing consicousness here recently

and it is starting to make me wonder if it might be LBD

> related. I must admit what I am reading is very grim and makes

me want to cry more than I normally do. I wanted to join a group of

people who may have some of the same feelings of helplessness and

anger that I have. I don't wish to always burden my husband or my

kids or my close friends. I love my mother and father dearly and

would do anything for them but sometimes I feel pressed when there

are other things I want do. Sometimes I just want to stay home and

do stuff around my house and have fun with my kids but of course I

have responsiblities to do for my mom. THen I have hugh feelings of

guilt. Also the feelings of helplessness as I watch her lose it day

by day. I know that someday she won't be here but its the journey

of her getting out of this life that that is so disturbing. I try

hard to be patient and loving always but I know sometimes I get

impatient with her when she says something bazzar. She has pretty

well lost most of her self care abilities and I do

> her hair and makeup daily. She still likes to go places and I

take her shopping and I am always trying to think of things to keep

her mind active. We all like to watch baseball and she can still

talk ball.

> I am praying that my dad and I can always care for her in their

home but sometimes I wonder. I can take her phyical decline more

than the mental and wonder how others deal with that. I will be

anxious to learn for those going down the same road because I feel

totally helpless and out of control to help my mom. I take it day

by day but like I said some days I just would like to put my head in

the sand.

> SIgh, I didn't mean to just vent my spleen during my first message

but I guess its just all coming out. Like I said before I don't

want to burden my immediate family and close friends. I know I tend

to tune a constant complainer out after awhile and I don't want to

be that.

> Looking forward to meeting some online support.

> Vallerie

> Ohio

>

>

>

[Guest guest]

Vallerie

welcome to our family although it saddens me you had to search us out. but here

feel free to vent, cry, laugh, share stories, share tears, scream giggle

whatever it takes to help you thru the rollercoaster ride of lbd.

first and foremost the first main and steadfast rule of caregiving is the

caregiver must take care of herself/himself FIRST, that means take time for

you, you need a break to do things that you want to do.

i assume you are an only child, i am too that left everything up to me and

with dads family in ny and me and donnie moving from tenn to florida to take

care fo daddy. it was hard sometimes he was the parent and i was the child

doesnt matter i was 43 at time. and other times i was the parent and he was the

66 year old child. it was very very hard.

have you considered hiring someone to come at least clean your mom and dads

house for you that would be one thing off your list of things to worry about.

also there are many programs available that may help. you can contact the

alzheirmers assoc and go to their support group meetings. they will supply a cg

(caregiver) if you givethem enough time to find one.

also do you have any nursing schools close by, you may be able to get a student

to come in a few hours a week to help your mom and dad. maybe even work with

your mom on things she can still do. we got a caregiver to come in on friday

nites every week so we could go bowling that was mine and donnies date nite

every week. the only time taht he and i could go out together. maybe your

teens can go play cards with grandma for a few hours a week, and give grandpa a

break. and you too.

is there a church that can help, many times there will be people that volunteer

to sit with elders. also meals on wheels can deliver a hot meal for lunch daily

for a reasonable cost.depending on income. the meals are hot and very

nutricious and most were quite good. or you can get a months of frozen meals

delivered and just pop them in the microwave. those were good too.

make sure that all the legal paperwork is done, wills, power of atty, medical

power of atty etc. that needs to be done immediately if not already done.

please feel free to ask your questions and vent to us, hugs, sharon m

---- Vallerie Edmonds wrote:

My name is Vallerie and my mother has had Parkinson's Disease for over 35 years.

She did pretty well for the first 30 years but things have been progressively

getting worst and worst the last five years. Three years ago she had the

nurostimulators implanted which I think does help with some of the Parkinson

symptoms. She lives at home with my father, her main caretaker. I live about

three miles away with my husband and two teenage sons. I am the main source of

help for my dad and I take care of my mom daily. She has developed dementia in

the last year or so which has led me to this group. I think she may have LBD

although I don't know for sure. After reading over some of the links that owner

of this list supplied it has really made me wonder. Parkinson's medication can

also bring on some the same symptons such as the hellucinations. However, my

mother has had some episodes of losing consicousness here recently and it is

starting to make me wonder if it might be LBD

related. I must admit what I am reading is very grim and makes me want to cry

more than I normally do. I wanted to join a group of people who may have some

of the same feelings of helplessness and anger that I have. I don't wish to

always burden my husband or my kids or my close friends. I love my mother and

father dearly and would do anything for them but sometimes I feel pressed when

there are other things I want do. Sometimes I just want to stay home and do

stuff around my house and have fun with my kids but of course I have

responsiblities to do for my mom. THen I have hugh feelings of guilt. Also the

feelings of helplessness as I watch her lose it day by day. I know that someday

she won't be here but its the journey of her getting out of this life that that

is so disturbing. I try hard to be patient and loving always but I know

sometimes I get impatient with her when she says something bazzar. She has

pretty well lost most of her self care abilities and I do

her hair and makeup daily. She still likes to go places and I take her

shopping and I am always trying to think of things to keep her mind active. We

all like to watch baseball and she can still talk ball.

I am praying that my dad and I can always care for her in their home but

sometimes I wonder. I can take her phyical decline more than the mental and

wonder how others deal with that. I will be anxious to learn for those going

down the same road because I feel totally helpless and out of control to help

my mom. I take it day by day but like I said some days I just would like to put

my head in the sand.

SIgh, I didn't mean to just vent my spleen during my first message but I guess

its just all coming out. Like I said before I don't want to burden my immediate

family and close friends. I know I tend to tune a constant complainer out after

awhile and I don't want to be that.

Looking forward to meeting some online support.

Vallerie

Ohio