Re: I Am New To The Group

[Guest guest]

Diane-

Welcome to our group. We really wish that you did not need to be here. LBD, in

my opinion, is very trying for both the lo (loveone) and the caregiver (cg).

However, with the help and support of this group, we will hopefully ease your

pain. You no longer will feel alone in the trials and tribulations of the LB

world. Most of the problems you have or will encounter, have probably been

experienced by our group and we will be here for you.

My Dad died 9/11/05 from LBD after a more than 4 yr. battle. My parents live

in the condo next to me. We kept Dad home throughout his illness with the

exception of 4 months spent in the hospital after a head trauma suffered from a

fall--thinking back now I know that was a big red flag that something serious

was going on. It wasn't just an accident. Anyway, life was very difficult. I

am an RN. Worked full time in the Labor and Delivery on the midnight shift and

took care of my Dad, which was truly a labor of love. I was on intermittent

FMLA so when Dad was having a really bad day, I could get off all or part of the

shift. (FMLA is a blessing for us working caregivers). My Mom participated in

Dad's care also, but at 86 yrs. of age, just use your imagination. I begged Mom

to hire more help, but my Mom is frugal. Now, as a consequence, my Mother is

becoming senile and I blame it on all the stress. My Mother is still

independent, but I see changes. Mom was once smart and witty, but now is

extremely forgetful. Repeats herself and asks the same questions over & over.

Also misses appointments and events. Fortunately, I am now retired. Caring for

Dad zapped much of my energy too. The biggest difference I can see in me is how

it has aged me. Wrinkles!!! My advice to you, if you keep your Mom home,

get/hire help and increase the help as time goes by.

I will keep you and your Mom in my prayers.

Hugs,

Gerry

Wilmington, De.

I Am New To The Group

HELLO EVERYONE

AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET, BUT I

HAVE READ ALL THE NEW

OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

QUITE NEW TO ME.

I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD DIED

AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT LBD

AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW REFERRING

MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED HER

TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY EVERY

WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE. MY

HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING WITH

THIS DISEASE.

IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET THROUGH

IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED FOR 6

YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT SURE

IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

I GUESS I'VE GONE ON QUITE ENOUGH.

THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

My best,

Diane

[Guest guest]

Hi Gerry,

Thank you for your kind words and for taking the time to write. I am

sorry for what you have gone through with Dad and I hope that your Mom

is doing better. I will keep both of you in my prayers. I know how

difficult it was for my Mom when Dad passed. After 52 years of always

being together and then one day they are gone...I can't imagine what

that feels like. I only made it to 13 years. <wink> Every Doctor that

I speak with confirms that this was probably the catalyst to Mom's

downward spiral.

My best,

Diane

[Guest guest]

Welcome Diane,

Does your email address indicate you are from the Boston area? Or is that part

of your name? We have other members from there.

I too, am sorry you have to be here, but here is the best place to be if you are

having LBD problems. You will find others who are in the same boat you are in.

I had Mom with me for 4 years. The last year of the 4 she spent in a nh.

Unfortunately I did a hospital visit to " help adjust the sleep meds. " that

about killed her. It took me a while to get her off the meds. Once I did, she

didn't have too much trouble. Mom couldn't take the meds. So we spent lots of

sleepless nights. I am still awake nights.

Some info, you might want to check out at the Yahoo site " Links " . I get the

links at the bottom of any message. There is also a DVD if you are interested.

Our Carol in Florida had a symposium last Feb, '06. It might be helpful to you.

If you can play DVDs, I can help. Otherwise Carol will need to get a video.

Just let us know.

There is also LBDA (Association) and they have some links that might be helpful.

They have put out a few newsletters. They are due up for another soon.

In Jan Carol is having another symposium for those who can get to Florida. She

has a monthly support group. The only one there is formally now. Some people

are having meetings in other areas informally. Let us know where you are

located.

Hugs, and hope we can help.

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.

I Am New To The Group

HELLO EVERYONE

AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET, BUT I

HAVE READ ALL THE NEW

OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

QUITE NEW TO ME.

I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD DIED

AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT LBD

AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW REFERRING

MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED HER

TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY EVERY

WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE. MY

HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING WITH

THIS DISEASE.

IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET THROUGH

IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED FOR 6

YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT SURE

IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

I GUESS I'VE GONE ON QUITE ENOUGH.

THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

My best,

Diane

[Guest guest]

Diane-

I reviewed my letter and I am sorry it sounded like a pity party. One thing I

left out, despite all, I loved caring for my Dad. I couldn't wait to get home

from work in the morning to see him. We sere so fortunate that his gentle

nature never waivered.

I am doing very well now. After I got through the first anniversary of Dad's

death, I felt like a new person. Our group got me through the first yr. and the

anniversary.

Speaking of anniversaries, my parents celebrated their 67th prior to Dad's

passing, so your point is well taken.

Hugs.

Gerry

I Am New To The Group

HELLO EVERYONE

AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET, BUT I

HAVE READ ALL THE NEW

OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

QUITE NEW TO ME.

I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD DIED

AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT LBD

AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW REFERRING

MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED HER

TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY EVERY

WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE. MY

HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING WITH

THIS DISEASE.

IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET THROUGH

IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED FOR 6

YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT SURE

IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

I GUESS I'VE GONE ON QUITE ENOUGH.

THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

My best,

Diane

[Guest guest]

Hi Donna,

Yes I am from the Boston area...

Thanks for all the information. I have been on overload with

information since getting the DX. I have a tendency to cram everything

in at once and not stop until I " think " I have done everything. I

really have to pace myself and I am trying very hard to do that. I

know this is going to be a long battle and it is going to get even

tougher than it is now. It's good to know that their will be support

here. Thanks for your kind words...

Diane (Boston)

[Guest guest]

Dear Gerry,

Wow, that is a long time to be married. Is it any wonder that a person

would get sick after losing a partner after so many years. I have

always thought of it as the second closest kind of relationship there

is. First being a mother . I gave that a lot of thought after Dad

passed.

Well, you don't need to apologize. No one can do this job without

loving and caring the person. It sometimes seems thankless; especially

when there is no " family support " out there.as in my case..The person I

get most of my support from is Mom's Doctor, who I will refer to as Dr.

A. She is wonderful and she has always said that we are a team; that

she needs me as much as I need her. That feels good and makes me feel

appreciated. And now I have you guys... <hugs>

Diane

[Guest guest]

Hi Callie,

Thanks for writing...died Dad 6 years ago last month; so it has been a

while. It has been a long 6 years with Mom. It breaks my heart to see

her like this.

Yes, there is a lot of information on the site plus the other LBD site

I belong to that has been most helpful; especially as far as

information.

I tried to go to your website you sent along, thank you, but I just got

gigantic letters and couldn't make anything out...it must be my

computer, but unfortunately I am not that computer savy to know how or

be able to fix problem.

Thanks again,

My best,

Diane

[Guest guest]

Hello Diane, and a warm welcome to a place I sure don't want to be, this

draining LBD, and I know from your letter you are finding it just as draining,

but this loving List will help you unload while learning.

I am 74 years old. Raised a house full of kids worked all my life, and

helped my love one for years with heart trouble, resulting in 2 open heart

surgeries, and now this!!!!

I hear you loud and clear, because I feel the same way, but I try to get

through one day at a time, and I have had to slow down the best I can.

We went to the doctor today, and his B/P was 122/72 . My B/P was 172/72.

Later in the Doctor's office the Doctor wanted it again. After trying to

hear her with her speech impediment, and my bad hearing,( I read lips and

couldn't read the Doctor's) my B/P was 178/72. Then I had to drive home in the

rain

with stroke level B/P. I did just fine, and slept 1 1/2 hours this

afternoon. Normally I don't get to sleep, but I felt sick.

So how to care for an LBD patient? One step at a time. Some steps drag, some

run, but that is all we can do.

I cared for the kids dementia grandmother, when I had six little ones. After

one week, in a small house with the kids opening the door in the Ohio winter

onto Grandma, I said " No, I can't do this. " Her own daughter will have to

care for her.

But, her own daughter wouldn't do it. She flat refused. A granddaughter with

six little ones did it. But, she had a big house, away from cold blast of

air all day.

I also took care of my MIL. That is another story. So I say, one step at a

time.

And mine are dragging now.

Imogene

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

Parkinsonism.

In a message dated 10/10/2006 6:26:46 AM Central Daylight Time,

diane.hillboston@... writes:

HELLO EVERYONE

AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET, BUT I

HAVE READ ALL THE NEW

OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

QUITE NEW TO ME.

I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD DIED

AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT LBD

AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW REFERRING

MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED HER

TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY EVERY

WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE. MY

HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING WITH

THIS DISEASE.

IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET THROUGH

IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED FOR 6

YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT SURE

IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

I GUESS I'VE GONE ON QUITE ENOUGH.

THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

My best,

Diane

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[Guest guest]

Hello Diane,

I know how you feel. A few weeks ago even before Dad's dx I had a

day so bad I almost checked myself into the mental floor of the

hospital. I just thought if one more thing happened that day I was

going to totally lose it.

Two things that are very important...do not be afraid to ask for and

accept help. Make sure you take time for yourself. These two are

key to keeping you from going crazy and making yourself ill. If mom

can't stay alone ask a family friend to stay with her for a couple

of hours while you get your hair done or go shopping or even go to

the local fast food joint for a lunch by yourself.

Feel free to come here often and talk about what is happening. We

all understand because we have all been there or are taking the

journey now.

Hugs to you,

Leah

>

> HELLO EVERYONE

> AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET,

BUT I

> HAVE READ ALL THE NEW

> OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

> QUITE NEW TO ME.

> I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD

DIED

> AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT

LBD

> AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW

REFERRING

> MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED

HER

> TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY

EVERY

> WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE.

MY

> HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING

WITH

> THIS DISEASE.

> IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET

THROUGH

> IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED

FOR 6

> YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT

SURE

> IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

> I GUESS I'VE GONE ON QUITE ENOUGH.

> THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

> My best,

> Diane

>

[Guest guest]

Diane

welcome to our family although it saddens me that you had to search us out. Lbd

is an awful rollercoaster of events. and some days/moments are worst that

others. first do you have all of your moms affairs in order?? wills, power of

attorney etc.

second, take each day one at a time. dont worry too much about what the next

day or week brings it will come before you know it.

also enjoy every good moment you have, try to find ways to make the bad times

beter, will changing the subject help you mom get on a better path.

also you need help, have you tried for hospice yet. doyou have a church

family that can help you. or are your finnaces such that you can hire a student

nurse or someone to sit with your mom and give yo ua break.

if not, callyour local council of aging, and elders affair offices. they have

programs that you may quailfy for that can help you with supplies, and

caregiving. good luck and hugs, sharon m

---- Diane wrote:

HELLO EVERYONE

AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET, BUT I

HAVE READ ALL THE NEW

OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

QUITE NEW TO ME.

I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD DIED

AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT LBD

AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW REFERRING

MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED HER

TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY EVERY

WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE. MY

HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING WITH

THIS DISEASE.

IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET THROUGH

IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED FOR 6

YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT SURE

IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

I GUESS I'VE GONE ON QUITE ENOUGH.

THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

My best,

Diane

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Hi Imogene,

What can I say? God bless you and I will keep you in my prayers. My

Mother always says to me, Diane, God will take care of you. As sick

as she is she sometimes sees how hard I work and all I do for her.

She tells everyone I am her " doctor " but the down side of that is

that sometimes she gets upset that I can't make her better or don't

have the answers. We have not told her the DX of LBD...she just

thinks she had some very mild strokes that have effected

her " processor " . She could never, ever handle the truth.

You must be a very special person to have cared for your Grandmother

as you did...

I wish your blood pressure was a little better. I hope you are

taking care of it. That sounds a little high. You need to take care

of yourself. Hopefully, the Doctor did something to help you with it.

Thanks again for writing...and be well...

My best,

Diane

[Guest guest]

Hi Leah,

Thanks for writing...yes, I do take time to recoup. I have no choice.

About 4 years ago I was diagnosed with Rheumatoid Arthritis and I am

now on medicine that takes a lot out of me... I do the best I can and

right now Mom is still living by herself. She won't move out of the

town she has lived in for almost 79 years. She is in senior housing

with an elevator that she doesn't use, so she is not going out. I talk

to her 20 times a day and she has help and a lot of relatives around in

case of emergency. I go down quite often and sleep over. I am only 40

minutes away. She is in the middle stages but it is getting to the

point where it may not be too soon before some other living

arrangements are going to have to be made. I do try to live and take

one day at a time. It is too over whelming to do it any other way...

What kind of Doctor gave you the LB DX? Did you know about LB before?

My best,

Thanks again,

Diane

[Guest guest]

Hi Sharon,

Thank you for the welcome. Yes, it's unfortunate that we meet like

this but I'm thankful for the group.

Like I said to Leah, Mom is still able to stay at home..with help and

frequest visits, etc.

Her affairs are all in order. Her Doctors had talked about AL years

ago right after Dad died and her sister and father died with it so I

figured Mom was heading down that path also. Her long term memory is

good but her short term memory is very poor most times.

I try to enjoy every minute I spend with her and try to not treat her

any different than before this damn disease. We were best friends.

But, she even says that it's like I am her Mother. I say no to her,

but that is exactly what it is like. I'm sure everyone can understand

what I mean.

Thanks for writing.

My best,

Diane

[Guest guest]

Hello Diane,

I just wanted to stop in and say Welcome! I will keep you and your Mother in my

thoughts

and prayers as you journey through the jagged streets of LewyVille.

Many hugs and wonderful Peace,

Stevie

***Caregiver for " Mr. B " since dx with Parkinson's in 1993, dx with LBD in 2003,

passed

July 6, 2006 in my home.***

* * * * *

> I Am New To The Group

>

> HELLO EVERYONE

> AS I SAID, I AM BRAND NEW TO THE GROUP. I HAVE NOT POSTED YET, BUT I

> HAVE READ ALL THE NEW

> OSTS SINCE JOINING. I AM FINDING IT VERY DIFFICULT AS THIS IS ALL

> QUITE NEW TO ME.

> I AM THE CARETAKER OF MY 78 ALMOST 79 YO MOM. SIX YEARS AGO DAD DIED

> AND MOM HAS NEVER BEEN THE SAME. JUST RECENTLY I FOUND OUT ABOUT LBD

> AND AFTER PRESENTING IT TO HER DOCTOR OF 19 YEARS SHE IS NOW REFERRING

> MOM'S ILLNESS AS DEMENTIA WITH POSSIBLE LEWY BODIES. I DON'T NEED HER

> TO TELL ME IT IS LBD. SHE IS CLASSIC LBD. IT IS CONSUMING MY EVERY

> WAKING MINUTE OF THINKING. IT SOUNDS LIKE SUCH A CRUEL DISEASE. MY

> HEART GOES OUT TO ALL OF YOU THAT HAVE DEALT WITH OR ARE DEALING WITH

> THIS DISEASE.

> IN READING SOME OF THE POSTS I'M NOT SURE HOW I AM GOING TO GET THROUGH

> IT AND IF I'M STRONG ENOUGH. I HAVE BEEN RUNNING MYSELF RAGGED FOR 6

> YEARS AND WE ARE PROBABLY ONLY INTO THE MID STAGES OF IT. I'M NOT SURE

> IF I AM PREPARED FOR THIS EMOTIONALLY AS WELL AS PHYSICALLY.

> I GUESS I'VE GONE ON QUITE ENOUGH.

> THANKS FOR LISTENING AND MY PRAYERS TO EVERYONE, ESPECIALLY PATTI.

> My best,

> Diane

>

[Guest guest]

Hi Diane -- I'm in the Boston area too... I live in Cambridge, MA.

Where in Boston do you live? FYI -- there is a ALZ vs. LBD lecture

that will be taking place at the nursing home Sherrill House in Jamaica

Plain on November 15th at 3 PM. A neurologist from Mass. General

Hospital will be there conducting the lecture. I requested details --

so when I get it, I can send you a copy...

This is the first lecture that I've heard about in the Boston area

since I was first introduced to LBD in January 2006 -- and it's in my

mom's NH no less... They still want me at the lecture, even though mom

passed -- not sure yet if I'll go, but I can at least pass on the info

to those who would like it...

Glad you found us Diane!

[Guest guest]

Hello, Diane and everyone.

My " Big " Baby is asleep, and daughter has gone home. She saw his confusion

today. I will scan the mail, and drop a line.

Diane, I am sorry about the Rheumatoid Arthritis. I understand it really

drains a person. And, that it is exceptionally painful. For that I am really

sorry. You are overloaded with problems.

When I had Grandma, I was a young healthy woman around 30 years old. I

worked hard and loved a lot. I could have kept her, if our house had been large

enough. When she lay on the couch in the living room, that front door was

opened fifteen to twenty times a day, with six little ones coming and going. I

would tell them to close the door dozens of times. Poor grandma lay there trying

to handle that cold blast of air. It was not good for her, and I knew it. I

had no place to put her.

She had to be watched closer than my babies. I baby proofed the house but

she wasn't a baby. She always kept a quilt wrapped around her shoulders, and

one day I grabbed it before she burned. She stood there by the open gas flame.

I was busy cooking, and she was trying to help. Her quilt corner was dragging

in the flame and I caught it just in time. I put it in water, and got her

another blanket.

She wanted to sew on buttons to help me, so I gave her a kid's shirt and the

buttons and thread. She sewed and sewed. She was happy to be helping me. I

thanked her very, very, much. And, behind her back I had to do it all over

again. She had sewed

lapping over the side of the buttons and the edge of the shirt, instead of

running through the holes. But, she tried.

I watched her drying dishes. She dried a while and stacked them to one side,

and dried the dry dishes and stacked them back into the dish rack with the

wet dishes.

One day I was ironing. I always did a huge ironing with starch. She had to

wash her hair right then, and was going upstairs to do it. Well, we didn't

have an upstairs, it was a long hall. I had to turn off the iron and go wash

her

hair. The starched shirt dried out, and I had to do it over.

When she used the toilet she had brown messes everywhere. The sink, floor,

the bath tub, and even on the wall where she tried to get paper. She took oil

all the time.

At night she would wake us up rummaging through drawers, and closets looking

for her glasses.

Or at other times she would just walk. We had to be careful with her going

on the busy highway, or out in the cold with her slippers on.

So in many ways she was more difficult to watch than a child. A child can be

contained to one area, one room, or a playpen. If I had been sick, there is

no way I could have cared for her and six little ones.

Blood pressure? Well, I can't take many medications. I am severely allergic.

Ace inhibitors swell me like a balloon. Beta Blockers give me Asthma

attacks, and damage my already damaged lungs. So the Channel Blocker is the only

thing left.

I take 90mg of Cardizem three times a day, but was supposed to be on 4. I

never could remember the four o'clock medications. I guess I will now. The

Doctor told me 4 a day is the largest dose I can take. I will get a little more

exercise, and try to loose some weight. That is difficult when I am on

Cortisone for my lungs. Cortisone is known for putting on weight. I jumped

twenty

pounds just looking at the pill. (LOL)

So we do the best we can, right? Take one day at a time, and hang in there.

There are always many happy things for which to be glad and thankful in our

hearts every day.

Imogene

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

Parkinsonism.

In a message dated 10/10/2006 11:26:49 PM Central Daylight Time,

diane.hillboston@... writes:

Hi Imogene,

What can I say? God bless you and I will keep you in my prayers. My

Mother always says to me, Diane, God will take care of you. As sick

as she is she sometimes sees how hard I work and all I do for her.

She tells everyone I am her " doctor " but the down side of that is

that sometimes she gets upset that I can't make her better or don't

have the answers. We have not told her the DX of LBD...she just

thinks she had some very mild strokes that have effected

her " processor " . She could never, ever handle the truth.

You must be a very special person to have cared for your Grandmother

as you did...

I wish your blood pressure was a little better. I hope you are

taking care of it. That sounds a little high. You need to take care

of yourself. Hopefully, the Doctor did something to help you with it.

Thanks again for writing...and be well...

My best,

Diane

[Guest guest]

diane,

we let my dad read about lbd in the beginnng of the diagnosis and sometimes he

understodd it other times he didnt. he could never remember the name of it, but

called it 'the little man in my head' as he knew it had a name in the title.

so we always called it the little man in his head'

if your mom wants some more information you can always call it lewy body

disease instead of dementia. becuase noone likes the word dementia. you can

always say that parts of her brain has a sickness to it. that her brain and body

are trying to fight it off, and that is causing her confusion and other

symptoms. you arent really stretching hte truth, becuase your body does

naturally try to fight illness. and for all we know that could make some of the

symptorms worse. as fro medicines, you dont take medicines except to help flu

and viral symptoms as virus need to run their course but you can take meds to

help some of the symptoms like headache etc. she may be able to understnad

that. it is hard i know, dad would alwys get angry at me. i was his scape goat

when it came to his bad and ugly moods, it was awful sometimes. but i am sure

it had to be worse for him. good luck and hugs, sharon m

---- Diane wrote:

Hi Imogene,

What can I say? God bless you and I will keep you in my prayers. My

Mother always says to me, Diane, God will take care of you. As sick

as she is she sometimes sees how hard I work and all I do for her.

She tells everyone I am her " doctor " but the down side of that is

that sometimes she gets upset that I can't make her better or don't

have the answers. We have not told her the DX of LBD...she just

thinks she had some very mild strokes that have effected

her " processor " . She could never, ever handle the truth.

You must be a very special person to have cared for your Grandmother

as you did...

I wish your blood pressure was a little better. I hope you are

taking care of it. That sounds a little high. You need to take care

of yourself. Hopefully, the Doctor did something to help you with it.

Thanks again for writing...and be well...

My best,

Diane

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

We went to the geriatric clinic at the University of Michigan. We

are fortunate enough to live just about an hour from U of M. The

DR. was a nurologist that specializes in geratrics. She new

immediately from some basic cognitive and reflex tests what was

wrong.

>

> Hi Leah,

> Thanks for writing...yes, I do take time to recoup. I have no

choice.

> About 4 years ago I was diagnosed with Rheumatoid Arthritis and I

am

> now on medicine that takes a lot out of me... I do the best I can

and

> right now Mom is still living by herself. She won't move out of

the

> town she has lived in for almost 79 years. She is in senior

housing

> with an elevator that she doesn't use, so she is not going out. I

talk

> to her 20 times a day and she has help and a lot of relatives

around in

> case of emergency. I go down quite often and sleep over. I am

only 40

> minutes away. She is in the middle stages but it is getting to

the

> point where it may not be too soon before some other living

> arrangements are going to have to be made. I do try to live and

take

> one day at a time. It is too over whelming to do it any other

way...

>

> What kind of Doctor gave you the LB DX? Did you know about LB

before?

> My best,

> Thanks again,

> Diane

>

[Guest guest]

Sorry, I realized I missed the second half of your question. I had

never heard of LBD prior to Dads dx.

>

> Hi Leah,

> Thanks for writing...yes, I do take time to recoup. I have no

choice.

> About 4 years ago I was diagnosed with Rheumatoid Arthritis and I

am

> now on medicine that takes a lot out of me... I do the best I can

and

> right now Mom is still living by herself. She won't move out of

the

> town she has lived in for almost 79 years. She is in senior

housing

> with an elevator that she doesn't use, so she is not going out. I

talk

> to her 20 times a day and she has help and a lot of relatives

around in

> case of emergency. I go down quite often and sleep over. I am

only 40

> minutes away. She is in the middle stages but it is getting to

the

> point where it may not be too soon before some other living

> arrangements are going to have to be made. I do try to live and

take

> one day at a time. It is too over whelming to do it any other

way...

>

> What kind of Doctor gave you the LB DX? Did you know about LB

before?

> My best,

> Thanks again,

> Diane

>

[Guest guest]

Sharon,

Thanks for the suggestion about describing LBd to Mom...She is full of

a million questions; so I try to keep them at a minimum...by not giving

up too much information and her doctor who knows her very well agrees.

She is a real worrier and will obsess about it; I am even sorry that I

mentioned to her about the " tiny strokes " she had; but she had to have

some kind of information. We are pushing the idea that when people get

to be 80 they have lots of " senior moments " ...it seems to work better

for her. I know everyone is different and at different stages and it

comes on in different ways.

I just had a great couple of days with her..just got home late tonight.

Had a ton of routine doctor appointments...primary, vascular and eye

doctor...everything so so...keeping out of trouble.

One day at a time...

Thanks for the toughts and ideas,

diane Boston

[Guest guest]

Hi Imogene,

Make sure you take that 4 o'clock pill. YOu don't need your BP out of

control like that.

Wow, sounds like yo had some real excitement taking care of Grandma.

It's always a challenge. I am not looking forward to the rougher days.

Yes, the Arthritis can be painful, but at least the meds help

somewhat..even though they make me sick the day I take them and the

next.

Spent a good couple of days at Moms...she was good but fresh and

funny. Very verbal trying to be funny; very unlike her; but it's ok...

Hope you are feeling better.

diane boston

[Guest guest]

Leah,

It makes it really great to be near big Hospitals...I am in Boston so

that is a good location also. It helps when you have great doctors to

support you...

diane

> >

> > Hi Leah,

> > Thanks for writing...yes, I do take time to recoup. I have no

> choice.

> > About 4 years ago I was diagnosed with Rheumatoid Arthritis and I

> am

> > now on medicine that takes a lot out of me... I do the best I can

> and

> > right now Mom is still living by herself. She won't move out of

> the

> > town she has lived in for almost 79 years. She is in senior

> housing

> > with an elevator that she doesn't use, so she is not going out.

I

> talk

> > to her 20 times a day and she has help and a lot of relatives

> around in

> > case of emergency. I go down quite often and sleep over. I am

> only 40

> > minutes away. She is in the middle stages but it is getting to

> the

> > point where it may not be too soon before some other living

> > arrangements are going to have to be made. I do try to live and

> take

> > one day at a time. It is too over whelming to do it any other

> way...

> >

> > What kind of Doctor gave you the LB DX? Did you know about LB

> before?

> > My best,

> > Thanks again,

> > Diane

> >

>