Re: Re: Hi Stevie

[Guest guest]

Hello Doris,

When the LBD LO's get to this stage, bedridden or unable to do for

themselves, and then they go into this " comatose-Lewy " state, you think they are

going

to pass and your emotions build up to the, " this-is-it " state, and sometimes it

goes on for days....then....out of the blue...they " wake up " and ask " what's

for dinner " , just as you made a decision about which black dress to wear to

the funeral. If only I can remember that each time this happens. That's the

part that is hard and draining.

* * * * * * *

I am nowhere near where you all are with your LO's in the care of my mom.

She is still on her own and quite independent although becoming less so. Is

starting to forget how to do laundry etc.

With my broken foot she was determined to help me so I called a taxi to

bring her over and she swept my kitchen floor and unravelled some old knitting I

have that I want to make over.

But the only thing that I can advise in terms of your question as the adult

child of an alcoholic is to live each day as it comes. don't think about the

past and don't worry about the future. There's nothing we can do about any

day except today.

Take care doris

juperant@... wrote:

OMG Jan! This is so true! I think he IS coming back! AGAIN! They must

have also given him Haldol to make him that way. He got up this morning at

his

regular time and is now watching TV in his chair, AND is speaking clearly.

He

still can't walk or use his left arm, but he is eating with his right hand

and

drinking coffee on his own. Amazing! Now, I certainly DO THINK that drugs

make this disease worse. It takes them to the doors of death, chews them up

a

bit, then spits them back to life with some damage. Unbelievable disease! I

thank you so much for being here! I think I would have gone bonkee if

someone

didn't tell me that this was real. 9:45 AM, i time, Peace, Stevie

P.S...The back and forth of this disease wreaks havoc on one's emotions. You

don't know whether to be happy that he is back or sad that it will be even

worse for him/us as time goes on. Puts you in quite a quandary. Anyone have

any thoughts on this subject?

* * * * * * * * *

Stevie,

Remember what I told you about the Haldol. Jim came

home and was somewhat like your Uncle. It took time,

but he came around almost back to what he was, with

the exception of the seizures.

It doesn't hurt to give your Uncle the aspirin, it's

such a small dosage, but can prevent a TIA or Heart

Attack from happening. Jim seems to have less seizures

or TIAs whatever they are, since I have been giving

him the aspirin. I pray that you will start to see

results with your Uncle, it will take time, but it can

happen. This disease is the strangest of any disease I

have ever heard of and so darn frustrating, because

you never know what you have from moment to moment. I

am here for you any time........Hugs, Jan

[Guest guest]

Hi, Stevie,

I am so sorry about all you and your uncle have been going through lately.

The news you had for us today is very encouraging, thank the Lord! I so

totally agree with you on the " back and forth " of this disease. It does play

havoc with our emotions. There have been so many times I thought my dad was

near death, and I would just be to pieces. You think you are prepared for it,

but then you think it might happen, and it is just awful. Then, when he

rebounds a little, I think how awful it is that he, and I, have to endure this

dreadful disease for longer. My dad is really far along in the disease so I

know it would be a blessing for him to be released. He hasn't been able to do

anything for himself for years, has frightening hallucinations much of the

time, and is " out " of it most of the time. He was able to walk and go out of

the house with me until last October, but has been house bound since. He lost

his fine motor skills very early on, but retained the ability to walk for a

long time. I was sure he was going to pass away last summer. I made all the

funeral arrangements and did all that stuff because I knew it was going to

happen at any minute, and now, here we are and it is the following February.

I just wish there was some way to know a timetable. Anyhoo, please know I am

thinking of you and your uncle, and praying that he continues to show

improvement.

Hugs,

Piper

[Guest guest]

Thank you so much Piper for letting me know that it's just not my

imagination. Jan told me about her husband's experience with Haldol and I'm

sure that is

what they gave my Uncle at the NH. The ups and downs are getting harder to

take. I have " made arrangements " so many times now that I don't know what I

want. My Uncle is about at the stage of your Dad. We thought he was " going "

last Summer too when he almost choked to death and his hallucinations have

gotten worse. He sees things all during the day now and they frighten him at

night. Day by day, as they say.

Thank you again for your concern and thank you so much for being here. Peace

to you, Stevie

* * * * * * * *

Hi, Stevie,

I am so sorry about all you and your uncle have been going through lately.

The news you had for us today is very encouraging, thank the Lord! I so

totally agree with you on the " back and forth " of this disease. It does

play

havoc with our emotions. There have been so many times I thought my dad was

near death, and I would just be to pieces. You think you are prepared for

it,

but then you think it might happen, and it is just awful. Then, when he

rebounds a little, I think how awful it is that he, and I, have to endure

this

dreadful disease for longer. My dad is really far along in the disease so I

know it would be a blessing for him to be released. He hasn't been able to

do

anything for himself for years, has frightening hallucinations much of the

time, and is " out " of it most of the time. He was able to walk and go out

of

the house with me until last October, but has been house bound since. He

lost

his fine motor skills very early on, but retained the ability to walk for a

long time. I was sure he was going to pass away last summer. I made all

the

funeral arrangements and did all that stuff because I knew it was going to

happen at any minute, and now, here we are and it is the following February.

I just wish there was some way to know a timetable. Anyhoo, please know I am

thinking of you and your uncle, and praying that he continues to show

improvement.

Hugs,

Piper

[Guest guest]

I am nowhere near where you all are with your LO's in the care of my mom. She

is still on her own and quite independent although becoming less so. Is

starting to forget how to do laundry etc.

With my broken foot she was determined to help me so I called a taxi to bring

her over and she swept my kitchen floor and unravelled some old knitting I have

that I want to make over.

But the only thing that I can advise in terms of your question as the adult

child of an alcoholic is to live each day as it comes. don't think about the

past and don't worry about the future. There's nothing we can do about any day

except today.

Take care doris

juperant@... wrote:

OMG Jan! This is so true! I think he IS coming back! AGAIN! They must

have also given him Haldol to make him that way. He got up this morning at his

regular time and is now watching TV in his chair, AND is speaking clearly. He

still can't walk or use his left arm, but he is eating with his right hand and

drinking coffee on his own. Amazing! Now, I certainly DO THINK that drugs

make this disease worse. It takes them to the doors of death, chews them up a

bit, then spits them back to life with some damage. Unbelievable disease! I

thank you so much for being here! I think I would have gone bonkee if someone

didn't tell me that this was real. 9:45 AM, i time, Peace, Stevie

P.S...The back and forth of this disease wreaks havoc on one's emotions. You

don't know whether to be happy that he is back or sad that it will be even

worse for him/us as time goes on. Puts you in quite a quandary. Anyone have

any thoughts on this subject?

* * * * * * * * *

Stevie,

Remember what I told you about the Haldol. Jim came

home and was somewhat like your Uncle. It took time,

but he came around almost back to what he was, with

the exception of the seizures.

It doesn't hurt to give your Uncle the aspirin, it's

such a small dosage, but can prevent a TIA or Heart

Attack from happening. Jim seems to have less seizures

or TIAs whatever they are, since I have been giving

him the aspirin. I pray that you will start to see

results with your Uncle, it will take time, but it can

happen. This disease is the strangest of any disease I

have ever heard of and so darn frustrating, because

you never know what you have from moment to moment. I

am here for you any time........Hugs, Jan

[Guest guest]

OH I THINK THIS DISEASE IS DIRECTLY FROM THE DEVIL I HAVE NEVER SEEN ANYTHING

SO EVIL. THIS WEEK THEY TOLD ME THAT KEEPING MAMA ON THE MEDS WAS LIKE KEEPING

HER IN PURGATORY AND WE DECIDED TO TAKE HER OFF EVERYTHING EXCEPT RESPERDOL.

AND NOW SHE'S GONE , DON'T KNOW ME, CAN'T FEED HERSELF , GO TO RESTROOM ALONE AT

ALL. ETC. LAST WEEK SHE COULD DO ALL THESE THINGS BEFORE BUT THE PROBLEM WAS SHE

HAD MEN WITH GUNS CHASING HER AND STEALING BABIES AND CHASING DRUNK CATS. ONE

DAY AT A TIME SWEET JESUS

THEY ALSO SAID THAT SINCE SHE CAN NO LONGER TALK THAT THEY GIVE HER 6 MONTHS

TO A YEAR TO HOLD ON. BLADDER INFECTIONS AND EAR INFECTIONS ARE CHRONIC AT THIS

POINT

I TELL YA I HURT IN MY HEART AND I WANT HER BACK SOOO BAD BUT I HAVE TO KEEP

SOME ACCEPTANCE ON THE SITUATION SOMEHOW OR I''LL LOSE IT. GOD HAS REALLY CAME

THROUGH BECAUSE MY STRENGTH IS IN THE LORD

I HAVEN'T BROKE DOWN YET. THANKS FOR LISTENING AND THANK GOD WE'RE NOT ALONE.

I FEEL MAMA FEELS SHE'S ALONE THOUGH SO I CONTINUE TO REMIND HER TO PRAY.

juperant@... wrote:

OMG Jan! This is so true! I think he IS coming back! AGAIN! They must

have also given him Haldol to make him that way. He got up this morning at his

regular time and is now watching TV in his chair, AND is speaking clearly. He

still can't walk or use his left arm, but he is eating with his right hand and

drinking coffee on his own. Amazing! Now, I certainly DO THINK that drugs

make this disease worse. It takes them to the doors of death, chews them up a

bit, then spits them back to life with some damage. Unbelievable disease! I

thank you so much for being here! I think I would have gone bonkee if someone

didn't tell me that this was real. 9:45 AM, i time, Peace, Stevie

P.S...The back and forth of this disease wreaks havoc on one's emotions. You

don't know whether to be happy that he is back or sad that it will be even

worse for him/us as time goes on. Puts you in quite a quandary. Anyone have

any thoughts on this subject?

* * * * * * * * *

Stevie,

Remember what I told you about the Haldol. Jim came

home and was somewhat like your Uncle. It took time,

but he came around almost back to what he was, with

the exception of the seizures.

It doesn't hurt to give your Uncle the aspirin, it's

such a small dosage, but can prevent a TIA or Heart

Attack from happening. Jim seems to have less seizures

or TIAs whatever they are, since I have been giving

him the aspirin. I pray that you will start to see

results with your Uncle, it will take time, but it can

happen. This disease is the strangest of any disease I

have ever heard of and so darn frustrating, because

you never know what you have from moment to moment. I

am here for you any time........Hugs, Jan

[Guest guest]

Hi Midge

Maybe they have taken your Mom off of these drugs too

soon? Just a guess now. Maybe you should explain this

to Dr. and tell him that you would like to try

reintroducing slowly one of the mind drugs. It may

make a huge difference. My mom is off of some of her

drugs, but she was not doing anything for her self.

She did not feed, clothe, brush her teeth, go to the

bathroom or anything on her own. I would call the Dr.

and explain. It couldn't hurt could it. Just my two

cents worth.

Dena

--- MIDGE GREER wrote:

> OH I THINK THIS DISEASE IS DIRECTLY FROM THE DEVIL

> I HAVE NEVER SEEN ANYTHING SO EVIL. THIS WEEK THEY

> TOLD ME THAT KEEPING MAMA ON THE MEDS WAS LIKE

> KEEPING HER IN PURGATORY AND WE DECIDED TO TAKE HER

> OFF EVERYTHING EXCEPT RESPERDOL. AND NOW SHE'S GONE

> , DON'T KNOW ME, CAN'T FEED HERSELF , GO TO RESTROOM

> ALONE AT ALL. ETC. LAST WEEK SHE COULD DO ALL THESE

> THINGS BEFORE BUT THE PROBLEM WAS SHE HAD MEN WITH

> GUNS CHASING HER AND STEALING BABIES AND CHASING

> DRUNK CATS. ONE DAY AT A TIME SWEET JESUS

> THEY ALSO SAID THAT SINCE SHE CAN NO LONGER TALK

> THAT THEY GIVE HER 6 MONTHS TO A YEAR TO HOLD ON.

> BLADDER INFECTIONS AND EAR INFECTIONS ARE CHRONIC AT

> THIS POINT

> I TELL YA I HURT IN MY HEART AND I WANT HER BACK

> SOOO BAD BUT I HAVE TO KEEP SOME ACCEPTANCE ON THE

> SITUATION SOMEHOW OR I''LL LOSE IT. GOD HAS REALLY

> CAME THROUGH BECAUSE MY STRENGTH IS IN THE LORD

> I HAVEN'T BROKE DOWN YET. THANKS FOR LISTENING

> AND THANK GOD WE'RE NOT ALONE. I FEEL MAMA FEELS

> SHE'S ALONE THOUGH SO I CONTINUE TO REMIND HER TO

> PRAY.

>

> juperant@... wrote:

> OMG Jan! This is so true! I think he IS coming

> back! AGAIN! They must

> have also given him Haldol to make him that way. He

> got up this morning at his

> regular time and is now watching TV in his chair,

> AND is speaking clearly. He

> still can't walk or use his left arm, but he is

> eating with his right hand and

> drinking coffee on his own. Amazing! Now, I

> certainly DO THINK that drugs

> make this disease worse. It takes them to the doors

> of death, chews them up a

> bit, then spits them back to life with some damage.

> Unbelievable disease! I

> thank you so much for being here! I think I would

> have gone bonkee if someone

> didn't tell me that this was real. 9:45 AM,

> i time, Peace, Stevie

>

> P.S...The back and forth of this disease wreaks

> havoc on one's emotions. You

> don't know whether to be happy that he is back or

> sad that it will be even

> worse for him/us as time goes on. Puts you in quite

> a quandary. Anyone have

> any thoughts on this subject?

>

> * * * * * * * * *

> Stevie,

> Remember what I told you about the Haldol. Jim came

> home and was somewhat like your Uncle. It took time,

> but he came around almost back to what he was, with

> the exception of the seizures.

> It doesn't hurt to give your Uncle the aspirin, it's

> such a small dosage, but can prevent a TIA or Heart

> Attack from happening. Jim seems to have less

> seizures

> or TIAs whatever they are, since I have been giving

> him the aspirin. I pray that you will start to see

> results with your Uncle, it will take time, but it

> can

> happen. This disease is the strangest of any disease

> I

> have ever heard of and so darn frustrating, because

> you never know what you have from moment to moment.

> I

> am here for you any time........Hugs, Jan

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>

[Guest guest]

Hi Stevie -

You sure have been through a lot with your Uncle. What a blessing you are in

his life. Like you say, this disease has a lot of ups and downs. One day we'd

have a great outing with my dad and the next week we'd be planning his funeral.

Not only was this hard on us - it was awful for him. That's what's extra hard

about LBD. Those with the disease really know what's going on when they have a

good day. My dad died in November, but It's comforting to know that now he's

only having good days with Jesus.

God bless you and your Uncle,

in WA

[Guest guest]

Hello ,

Lately my time away from the computer can be 24 hours or more so I can't

remember if I wrote back to you...probably did......so here I go again anyway.

My Uncle's condition remains the same as written before. His bed sores are

worse though....that's why he first went into the nursing home...and they have

to be tended to by a nurse every day, which is great because that means

someone comes here every day from Hospice.

Because he is immobile now, I am looking for a CNA or LVN to help me for a

few hours a day. That's what I have been doing today..........HA!.........as

soon as the first CNA walked in for her minimal " four hours " I knew she wasn't

coming back. What a joke. She went from room to room looking at all of my

stuff and I thought she was going to go upstairs and take a peek, but I stood in

front of the stair case so she couldn't pass. This is a whole new subject

within itself! A stranger coming to your home and taking care of your LO? How

frightening.

This CNA started asking questions like how old is he? What meds is he taking?

(she is not to give him any meds) Is he coherent? Does he have family?

....before I could even tell her what was wrong with him! Again, this person

came

here thinking he had Alzheimer's and thought he " wasn't there. " I corrected

that right away and said, " No, he hears everything and knows exactly what's

going on...he just can't tell you right away what he thinks. "

Then, after going on for 10 minutes without letting me say a word, she asked

me if I was with him all night? I said, " Of course, I live here. " She said,

" So you stay here all the time? " . With Mr. Trump's famous words in mind

(YOU'RE FIRED!), I patiently said, " Of course I do, I own this house, " she

responded with, " Oh...I didn't know you were the Niece, I thought you were the

night

nurse. " She's soooo NOT coming back tomorrow! Good grief. Just when you

think it's safe to go back into the water....there's one more thing to deal

with!

Another CNA (male) from a different company is coming to interview at 4:00

this afternoon. From now on I will just " interview " first before they send just

anyone out here. Something to note or think about if you are looking for

help in the home.

....Gotta go see if this chick's in the silver....LOL Hope everyone is

having a great day! Peace, Stevie

* * * * * * * *

How uplifting to hear some GOOD NEWS on this conference! Can hear the relief

in your

voice. I hope he has a lot farther to come back for you.

Perhaps this experience was meant to help prepare you for end of life when it

does come.

It is painful and drawn out, you've had a glimpse. Horrific one at that.

Welcome him back for us!!!!!

>

> OMG Jan! This is so true! I think he IS coming back! AGAIN! They must

> have also given him Haldol to make him that way. He got up this morning at

his

> regular time and is now watching TV in his chair, AND is speaking clearly.

He

> still can't walk or use his left arm, but he is eating with his right hand

and

> drinking coffee on his own. Amazing! Now, I certainly DO THINK that drugs

> make this disease worse. It takes them to the doors of death, chews them

up a

> bit, then spits them back to life with some damage. Unbelievable disease!

I

> thank you so much for being here! I think I would have gone bonkee if

someone

> didn't tell me that this was real. 9:45 AM, i time, Peace, Stevie

>

> P.S...The back and forth of this disease wreaks havoc on one's emotions.

You

> don't know whether to be happy that he is back or sad that it will be even

> worse for him/us as time goes on. Puts you in quite a quandary. Anyone

have

> any thoughts on this subject?

[Guest guest]

Hi, Stevie,

I so know what you mean about trying to hire outside help to come in. I

know you must be so stressed trying to deal with that on top of everything

else.

I have some sitters that come in to help me with my Dad, but mostly they

just come for a day and get fired. I have one lady that my Dad really likes,

but she cannot lift him so I have to be here with her in case he tries to get

up. I don't like having different people here as it upsets my Dad, but it

would be nice to have someone that could help me with the heavy lifting. I am

going to keep trying to find someone that Dad likes that can help. It

bothers me because the sitters (except the one we like) know nothing about my

dad

and don't seem to want to know. He has been sick for a long time, but I think

each and every one of our LOs deserves a great deal of respect. Watch out

for the silver, and nail everything else to the floor!!

Hugs,

Piper

[Guest guest]

OMG...Will this nightmare ever end??? The CNA just left....through the metal

detector....and on the way out she was going in every direction looking and

touching everything in site. So much so that I am considering a move for

Pete's sake! Talk about feeling invaded! Where do they get these people?

That's

pretty funny what you said they " come one day and get fired " ....no kidding!

They're like the traveling wanna-be-workin-in-a-nursing-home-but-even-dumber

gang. Good grief....I'll do it myself.

Thanks for your input....I'll keep interviewing! Peace, Stevie

P.S....one funny thing...my Unc " pretended " to be sleeping the whole time

because he didn't like her and said he did that because he didn't want to answer

her questions. LOLOLOL Pretty smart Lewy!

* * * * * * * * *

Hi, Stevie,

I so know what you mean about trying to hire outside help to come in. I

know you must be so stressed trying to deal with that on top of everything

else.

I have some sitters that come in to help me with my Dad, but mostly they

just come for a day and get fired. I have one lady that my Dad really

likes,

but she cannot lift him so I have to be here with her in case he tries to

get

up. I don't like having different people here as it upsets my Dad, but it

would be nice to have someone that could help me with the heavy lifting. I

am

going to keep trying to find someone that Dad likes that can help. It

bothers me because the sitters (except the one we like) know nothing about

my dad

and don't seem to want to know. He has been sick for a long time, but I

think

each and every one of our LOs deserves a great deal of respect. Watch out

for the silver, and nail everything else to the floor!!

Hugs,

Piper

[Guest guest]

Stevie,

HAHAHAHAHA!!! I never thought of a metal detector - great thought!!

Piper

[Guest guest]

The 4:00 CNA interview came to the door right on time, addressed me as " Mum, "

shook my hand and introduced himself. I asked him if he played Texas hold

'em or Ping Pong?.....he said " Both Mum " .....I said, 'You're hired...be here

tomorrow at 8:00. "

Everyone have a wonderful night, drinks are on me. Peace, Stevie

P.S...LOL Myrna....I'll have this guy help me install the camera after a game

of Ping Pong.

* * * * * * * *

I think you should tell each CNA that comes to your house that you are

videotaping in every room except the bathroom. Then see how long she stays

in the bathroom. Ha Ha....Myrna in Missouri

Re: Re: Hi Stevie

> OMG...Will this nightmare ever end??? The CNA just left....through the

metal

> detector....and on the way out she was going in every direction looking

and

> touching everything in site. So much so that I am considering a move for

> Pete's sake! Talk about feeling invaded! Where do they get these people?

That's

> pretty funny what you said they " come one day and get fired " ....no

kidding!

> They're like the traveling

wanna-be-workin-in-a-nursing-home-but-even-dumber

> gang. Good grief....I'll do it myself.

>

> Thanks for your input....I'll keep interviewing! Peace, Stevie

>

> P.S....one funny thing...my Unc " pretended " to be sleeping the whole time

> because he didn't like her and said he did that because he didn't want to

answer

> her questions. LOLOLOL Pretty smart Lewy!

>

> * * * * * * * * *

> Hi, Stevie,

>

> I so know what you mean about trying to hire outside help to come in. I

> know you must be so stressed trying to deal with that on top of everything

> else.

> I have some sitters that come in to help me with my Dad, but mostly they

> just come for a day and get fired. I have one lady that my Dad really

> likes,

> but she cannot lift him so I have to be here with her in case he tries to

> get

> up. I don't like having different people here as it upsets my Dad, but

it

> would be nice to have someone that could help me with the heavy lifting.

I

> am

> going to keep trying to find someone that Dad likes that can help. It

> bothers me because the sitters (except the one we like) know nothing

about

> my dad

> and don't seem to want to know. He has been sick for a long time, but I

> think

> each and every one of our LOs deserves a great deal of respect. Watch

out

> for the silver, and nail everything else to the floor!!

>

> Hugs,

>

> Piper

[Guest guest]

Stevie,

In the first years of Lewy, I hired a CNA that had

been recommended to me. She seemed great, even cleaned

the house beautifully and made lunches for Jim. Then

one day I became very sick at work and they all told

me to go home, the CNA didn't expect me any earlier

than usual. When I arrived home, Jim literally had his

face down in his plate of food sound asleep in the

kitchen, while she sat in another room watching soap

operas. It was good-bye to her. I called the agency

and they sent me another person. I was still sick with

the flu and staying home. I was glad to have someone

watching after Jim. Well, samething again. I kept

hearing Jim call for his lunch and the TV was on and

he kept yelling, so I got up to see what he wanted. He

was left in the kitchen while she was watching soap

operas. I made the stupid mistake of telling her I

needed her one more day and went to work the next day,

she called me at work saying she had an emergency with

one of her kids at home and had to leave. She left Jim

at home alone and I left work and rushed home. She

also stole our Boombox on her way out the door. I

called to report her to the agency, but it was her

word against mine. They said they had never had a

negative call about her before and I said, " will now

you have! "

I called another agency that the Parkinson's Support

Group in our area recommends and this time asked for a

man, since the women seem to get hooked into the soap

operas. He and Jim get along really well. Jim looks

forward to seeing him, since it is the only male

person that comes to the house anymore. I have had

some problems with him, but they get ironed out. He

has been with us for 7 years now. In my personal

experience, I think the men work out better. They

don't seem to do the house work, but I feel like Jim

is being watched anyway.

Good Luck, sometimes you have to go through a few

before hitting on the right one. Jan

--- juperant@... wrote:

> Hello ,

>

> Lately my time away from the computer can be 24

> hours or more so I can't

> remember if I wrote back to you...probably

> did......so here I go again anyway.

>

> My Uncle's condition remains the same as written

> before. His bed sores are

> worse though....that's why he first went into the

> nursing home...and they have

> to be tended to by a nurse every day, which is great

> because that means

> someone comes here every day from Hospice.

>

> Because he is immobile now, I am looking for a CNA

> or LVN to help me for a

> few hours a day. That's what I have been doing

> today..........HA!.........as

> soon as the first CNA walked in for her minimal

> " four hours " I knew she wasn't

> coming back. What a joke. She went from room to

> room looking at all of my

> stuff and I thought she was going to go upstairs and

> take a peek, but I stood in

> front of the stair case so she couldn't pass. This

> is a whole new subject

> within itself! A stranger coming to your home and

> taking care of your LO? How

> frightening.

>

> This CNA started asking questions like how old is

> he? What meds is he taking?

> (she is not to give him any meds) Is he coherent?

> Does he have family?

> ...before I could even tell her what was wrong with

> him! Again, this person came

> here thinking he had Alzheimer's and thought he

> " wasn't there. " I corrected

> that right away and said, " No, he hears everything

> and knows exactly what's

> going on...he just can't tell you right away what he

> thinks. "

>

> Then, after going on for 10 minutes without letting

> me say a word, she asked

> me if I was with him all night? I said, " Of course,

> I live here. " She said,

> " So you stay here all the time? " . With Mr. Trump's

> famous words in mind

> (YOU'RE FIRED!), I patiently said, " Of course I do,

> I own this house, " she

> responded with, " Oh...I didn't know you were the

> Niece, I thought you were the night

> nurse. " She's soooo NOT coming back tomorrow! Good

> grief. Just when you

> think it's safe to go back into the water....there's

> one more thing to deal with!

>

> Another CNA (male) from a different company is

> coming to interview at 4:00

> this afternoon. From now on I will just " interview "

> first before they send just

> anyone out here. Something to note or think about

> if you are looking for

> help in the home.

>

> ...Gotta go see if this chick's in the silver....LOL

> Hope everyone is

> having a great day! Peace, Stevie

>

> * * * * * * * *

>

>

>

>

> How uplifting to hear some GOOD NEWS on this

> conference! Can hear the relief

> in your

> voice. I hope he has a lot farther to come back for

> you.

> Perhaps this experience was meant to help prepare

> you for end of life when it

> does come.

> It is painful and drawn out, you've had a glimpse.

> Horrific one at that.

> Welcome him back for us!!!!!

>

>

>

> >

> > OMG Jan! This is so true! I think he IS coming

> back! AGAIN! They must

> > have also given him Haldol to make him that way.

> He got up this morning at

> his

> > regular time and is now watching TV in his chair,

> AND is speaking clearly.

> He

> > still can't walk or use his left arm, but he is

> eating with his right hand

> and

> > drinking coffee on his own. Amazing! Now, I

> certainly DO THINK that drugs

> > make this disease worse. It takes them to the

> doors of death, chews them

> up a

> > bit, then spits them back to life with some

> damage. Unbelievable disease!

> I

> > thank you so much for being here! I think I would

> have gone bonkee if

> someone

> > didn't tell me that this was real. 9:45 AM,

> i time, Peace, Stevie

> >

> > P.S...The back and forth of this disease wreaks

> havoc on one's emotions.

> You

> > don't know whether to be happy that he is back or

> sad that it will be even

> > worse for him/us as time goes on. Puts you in

> quite a quandary. Anyone

> have

> > any thoughts on this subject?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hello ,

Unfortunately my Unc's bed sore have not improved but have gotten worse.

They look horrible and I won't go into detail but ........ouch!.....no wonder he

gets grumpy! It started off with one sore on his bum and now the whole area

where he sits on his bum is black and blue with open sores (sorry everyone) but

these things really can get serious.

The nurse explained today that the discoloration is because the circulation

is very bad (his circulatory system is starting to break down) and the red scar

like lesions are because the skin is so thin from lack of eating. He has to

lie down on his side for two hours at a time and then get turned over for two

more hours. We have Roxinal for pain if he requests it and a nurse comes to

dress his wounds every day. We'll just have to see what happens.

As far as the CNA help, you are very fortunate to have such good care. It's

a known fact in my area that one does NOT want to end up in a nursing home

because they are overcrowded and there is not enough help. Maybe one CNA is

responsible for an average of 22 patients. Try putting 22 kids to bed at one

time! That's what it's like.

Thanks again for your concern and I will look into the lambs wool idea again.

Peace to you, Stevie

* * * * * * * * *

So sorry to hear about your uncle's bedsores! Hopefully now that he is

moving more they

will improve with treatment. Can be brutal. I forget where they are, but

any pressure you

can relieve from the area daily, along with lambs wool to permit air flow

when pressure is

put on them will help. I hope you have found good nursing care to advise you

in that care.

I am blown away with your description of a CNA (not sure what that stands

for) scouting

your home as you describe! I'm fairly new here, but it sounds like this is

an ongoing issue!

I may be naive, but the aides we have had come in to assist Mom through the

years, while

in her apartment and then in assisted living have been above board, along

with the

workers in her nh. What an incredible worry to have to deal with on top of

LBD!

in Ont.

[Guest guest]

Hi Jan

Just unbelievable!! It is amazing what kinds of people

there are out there. Does anyone really care? I really

do not want to hear that answer. It is scary.

Dena

--- Janet Colello wrote:

> Stevie,

> In the first years of Lewy, I hired a CNA that had

> been recommended to me. She seemed great, even

> cleaned

> the house beautifully and made lunches for Jim. Then

> one day I became very sick at work and they all told

> me to go home, the CNA didn't expect me any earlier

> than usual. When I arrived home, Jim literally had

> his

> face down in his plate of food sound asleep in the

> kitchen, while she sat in another room watching soap

> operas. It was good-bye to her. I called the agency

> and they sent me another person. I was still sick

> with

> the flu and staying home. I was glad to have someone

> watching after Jim. Well, samething again. I kept

> hearing Jim call for his lunch and the TV was on and

> he kept yelling, so I got up to see what he wanted.

> He

> was left in the kitchen while she was watching soap

> operas. I made the stupid mistake of telling her I

> needed her one more day and went to work the next

> day,

> she called me at work saying she had an emergency

> with

> one of her kids at home and had to leave. She left

> Jim

> at home alone and I left work and rushed home. She

> also stole our Boombox on her way out the door. I

> called to report her to the agency, but it was her

> word against mine. They said they had never had a

> negative call about her before and I said, " will now

> you have! "

> I called another agency that the Parkinson's Support

> Group in our area recommends and this time asked for

> a

> man, since the women seem to get hooked into the

> soap

> operas. He and Jim get along really well. Jim looks

> forward to seeing him, since it is the only male

> person that comes to the house anymore. I have had

> some problems with him, but they get ironed out. He

> has been with us for 7 years now. In my personal

> experience, I think the men work out better. They

> don't seem to do the house work, but I feel like Jim

> is being watched anyway.

> Good Luck, sometimes you have to go through a few

> before hitting on the right one. Jan

>

>

>

>

> --- juperant@... wrote:

>

> > Hello ,

> >

> > Lately my time away from the computer can be 24

> > hours or more so I can't

> > remember if I wrote back to you...probably

> > did......so here I go again anyway.

> >

> > My Uncle's condition remains the same as written

> > before. His bed sores are

> > worse though....that's why he first went into the

> > nursing home...and they have

> > to be tended to by a nurse every day, which is

> great

> > because that means

> > someone comes here every day from Hospice.

> >

> > Because he is immobile now, I am looking for a CNA

> > or LVN to help me for a

> > few hours a day. That's what I have been doing

> > today..........HA!.........as

> > soon as the first CNA walked in for her minimal

> > " four hours " I knew she wasn't

> > coming back. What a joke. She went from room to

> > room looking at all of my

> > stuff and I thought she was going to go upstairs

> and

> > take a peek, but I stood in

> > front of the stair case so she couldn't pass.

> This

> > is a whole new subject

> > within itself! A stranger coming to your home and

> > taking care of your LO? How

> > frightening.

> >

> > This CNA started asking questions like how old is

> > he? What meds is he taking?

> > (she is not to give him any meds) Is he coherent?

>

> > Does he have family?

> > ...before I could even tell her what was wrong

> with

> > him! Again, this person came

> > here thinking he had Alzheimer's and thought he

> > " wasn't there. " I corrected

> > that right away and said, " No, he hears everything

> > and knows exactly what's

> > going on...he just can't tell you right away what

> he

> > thinks. "

> >

> > Then, after going on for 10 minutes without

> letting

> > me say a word, she asked

> > me if I was with him all night? I said, " Of

> course,

> > I live here. " She said,

> > " So you stay here all the time? " . With Mr.

> Trump's

> > famous words in mind

> > (YOU'RE FIRED!), I patiently said, " Of course I

> do,

> > I own this house, " she

> > responded with, " Oh...I didn't know you were the

> > Niece, I thought you were the night

> > nurse. " She's soooo NOT coming back tomorrow!

> Good

> > grief. Just when you

> > think it's safe to go back into the

> water....there's

> > one more thing to deal with!

> >

> > Another CNA (male) from a different company is

> > coming to interview at 4:00

> > this afternoon. From now on I will just

> " interview "

> > first before they send just

> > anyone out here. Something to note or think about

> > if you are looking for

> > help in the home.

> >

> > ...Gotta go see if this chick's in the

> silver....LOL

> > Hope everyone is

> > having a great day! Peace, Stevie

> >

> > * * * * * * * *

> >

> >

> >

> >

> > How uplifting to hear some GOOD NEWS on this

> > conference! Can hear the relief

> > in your

> > voice. I hope he has a lot farther to come back

> for

> > you.

> > Perhaps this experience was meant to help prepare

> > you for end of life when it

> > does come.

> > It is painful and drawn out, you've had a glimpse.

>

> > Horrific one at that.

> > Welcome him back for us!!!!!

> >

> >

> >

> > >

> > > OMG Jan! This is so true! I think he IS coming

> > back! AGAIN! They must

> > > have also given him Haldol to make him that way.

>

> > He got up this morning at

> > his

> > > regular time and is now watching TV in his

> chair,

> > AND is speaking clearly.

> > He

> > > still can't walk or use his left arm, but he is

> > eating with his right hand

> > and

> > > drinking coffee on his own. Amazing! Now, I

> > certainly DO THINK that drugs

> > > make this disease worse. It takes them to the

> > doors of death, chews them

> > up a

> > > bit, then spits them back to life with some

> > damage. Unbelievable disease!

> > I

> > > thank you so much for being here! I think I

> would

> > have gone bonkee if

> > someone

> > > didn't tell me that this was real. 9:45 AM,

> > i time, Peace, Stevie

> > >

> > > P.S...The back and forth of this disease wreaks

> > havoc on one's emotions.

> > You

> > > don't know whether to be happy that he is back

> or

> > sad that it will be even

> > > worse for him/us as time goes on. Puts you in

> > quite a quandary. Anyone

> > have

> > > any thoughts on this subject?

> >

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hi Stevie

My mom now has a stage 3 bed sore on her bottom. And I

know exactly what you mean. She has the same thing in

the middle of her butt and the stage 3 in on the side.

We were using Silver Sulfadiazine Cream, now have

switched to MetroGel and for debriding Accuzyme. The

hospice nurse explained to me that when the area looks

like a scab it is like a ice berg underneath. So as

the debriding starts to work, a large area underneath

the surface will appear. So now my mom has this stage

3 area that is yucky looking, but it is clean and is

healing. It is just really deep and scary to me. She

also has a bad ear with one on it and the one on her

calf is much better. A new one has appeared on the

bottom on her right foot. Which I find totally weird

since her feet are always up or she is in bed. She has

almost zero pressure on her feet expect when she walks

from the bed to the bathroom, which she does still try

to do. It is really difficult, but we do do it.

Stevie, it is a losing battle. She has one after the

other. We just get one cleared up and the next one is

there. It makes you feel inept to care for your LO. I

will be looking into a NH near my mom next week. I

just do not want to be pressured into looking and then

have no idea of what to do. I really wanted a

residential care, but I do not think they will take

her with all the bed sores. Hang in there. At least

the weather is holding.

Dena

--- juperant@... wrote:

> Hello ,

>

> Unfortunately my Unc's bed sore have not improved

> but have gotten worse.

> They look horrible and I won't go into detail but

> ........ouch!.....no wonder he

> gets grumpy! It started off with one sore on his

> bum and now the whole area

> where he sits on his bum is black and blue with open

> sores (sorry everyone) but

> these things really can get serious.

>

> The nurse explained today that the discoloration is

> because the circulation

> is very bad (his circulatory system is starting to

> break down) and the red scar

> like lesions are because the skin is so thin from

> lack of eating. He has to

> lie down on his side for two hours at a time and

> then get turned over for two

> more hours. We have Roxinal for pain if he requests

> it and a nurse comes to

> dress his wounds every day. We'll just have to see

> what happens.

>

> As far as the CNA help, you are very fortunate to

> have such good care. It's

> a known fact in my area that one does NOT want to

> end up in a nursing home

> because they are overcrowded and there is not enough

> help. Maybe one CNA is

> responsible for an average of 22 patients. Try

> putting 22 kids to bed at one

> time! That's what it's like.

>

> Thanks again for your concern and I will look into

> the lambs wool idea again.

> Peace to you, Stevie

>

> * * * * * * * * *

>

>

> So sorry to hear about your uncle's bedsores!

> Hopefully now that he is

> moving more they

> will improve with treatment. Can be brutal. I

> forget where they are, but

> any pressure you

> can relieve from the area daily, along with lambs

> wool to permit air flow

> when pressure is

> put on them will help. I hope you have found good

> nursing care to advise you

> in that care.

> I am blown away with your description of a CNA (not

> sure what that stands

> for) scouting

> your home as you describe! I'm fairly new here, but

> it sounds like this is

> an ongoing issue!

> I may be naive, but the aides we have had come in to

> assist Mom through the

> years, while

> in her apartment and then in assisted living have

> been above board, along

> with the

> workers in her nh. What an incredible worry to have

> to deal with on top of

> LBD!

> in Ont.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thank you so much for your prayers Sandie. Early this morning, before my

husband went to work, I took a short drive to the Harbor and along the

Coast....with the heater on. Only in California. LOL Thank you so much for

being

here. Much Peace, Stevie

* * * * * * * * *

Hi Stevie-

Wanted to chime in and let you know we bought a '99

Mercedes in August. They truly are nice cars. Ours

isn't a convertible but does have a sun roof. The ride

is smooth and fabulous. I shall think of you and Mr. B

next time I am in our car...interestingly enough, and I

forgot to mention, ours is silver as well. You and Mr.

B are in my thoughts and prayers this evening.

Wishing you a peaceful evening, hoping you feel

strength from the prayers being lifted up-

Sandie

Des Moines - experiencing winter all over again...

expecting a HIGH of 9 tomorrow...brrrrrrrr and we have

snow again...wheeeeeeeeeeee

[Guest guest]

Dear Gerry....Please take a ride for me! Sounds wonderful! Much Peace to

you, Stevie

Stevie

Laguna Niguel, California

Temp 58 degrees

Cloudy and raining on and off

Sandie-

Where do you live? The North Pole? I live in Delaware. We have been

blessed with a very mild winter this year. We had about 8 inches or so of snow

last

Sunday, NYC 2 hrs away had 27 " . The snow has melted already. I have not

worn my heavy winter coat this year.

Today my Harry and I are escaping for a ride to polis, land. It is

the Capitol of land and I believe the sailboat capitol of the world. Also

the Naval Academy is there. Whenever I am stressed, we go there. Went there

after we buried my Dad. Happy to say, I do not feel stress right now.

I really appreciate when caregivers include where they are from in their

email. It is amazing to see where everyone is from and unfortuately, how

widespread LBD is

I wish everyonea good day, whether you go for a drive or staying put with

your LO.

XXXOOO

Gerry

Wilmington, De.

Temp. 38, Gray day

[Guest guest]

Stevie-

Such a strange disease LBD is. It seems we, as

caregivers, spend so much time preparing for the

end of the journey that when it finally does come we

are totally unprepared. There are so many changes

it is hard to keep up and tougher to predict. As I have

written in the group before, as long as there is life there

is hope. Cherish each and every moment even if it

seems like a struggle. Once those moments are gone

they are gone forever.

Much strength to you and always sending up extra

prayers for you and Mr. B as well as the many still

travelling the LBD journey. There seems to be quite

a few struggling with decisions and what seems to be

the end. My heart goes out to every one.

Thank you for continuing to update us with what is

happening in your days.

Kia Kaha-

Sandie

Des Moines, IA

-- Re: Re: Hi Stevie - update

Hello Sandie and All, Oh how I wish I could take Mr. B for a drive. If we

can just get him in the car!

Last night he rang around 2:30 and he was almost out of his bed....OVER the

side rail! He talked a mile a minute and kept on saying he wanted to " go

home. " It took a while to settle him down and tuck him back into bed. He

rang

again at 3:00 and said he couldn't reach the bell. You can see how coherent

he

is.

He has been in another Coma-Lewy state all day today and non-responsive.

His

eyes have been open and he sees me, then looks next to me, like

something/someone is there. He insists on wearing his watch (he acts like

he's going

somewhere) and we can't understand a word he is saying. At one time today

when I

checked on him, he told me I was " nice. " Then he said something like " aren

t

you going to bed? " . That's it.

We have been checking on him every half hour to see if he wants to get up to

eat and he says he just wants to sleep, then closes his eyes again.

It has been a trying day....would have gone for a drive but it was raining

on

and off and COLD. Need to get out before I get sucked into the other

dimension. Just a waiting game at this point.

Hope this finds you warm and happy. Much Peace for everyone tonight..it's

on

me! Stevie

P.S....sorry...a little punchy here.

* * * * * * * * *

Stevie-

Your drive sounds wonderful. We aren't doing a lot

of cruising these days as we are experiencing winter

all over again. Last nights temps. dipped down below

zero and tonight we are supposed to get to -11,

actual temperature. We have snow as well. I love

the snow and with an F150 4X4 pickup - there is lots

of fun to be had. Not sure if appreciates the

fun side of driving in a pickup but I love to take him

for rides anyway. His snow driving, well...that's another

Oprah show...he is doing much better than first of

winter I must admit. No more accidents with the

Mercedes as of late.

Would have loved to have heard that Mr. B was out

and about in the Mercedes yet as long as he is there

in spirit and in his mind it makes me smile. He will

always be with us in our car travelling around Iowa.

Many hugs to you today and always-

Sandie