Re: Hi Stevie, just wondering how Mr. B is?

[Guest guest]

Hello Dena and All,

Yes we are still here, for the time being. You are right though...I have

been taking care of a (not so) hungry confused man who somehow remembers if he

" rings the bell, " I will be there.

Mr. B " woke up " at 10:30 that night.....a few days ago, don't ask me what day

because I'm too tired to figure it out now... : ) ...and wanted to get up.

He wasn't hungry, he just wanted to " get up " ! I had just finished talking to

my Mother in San Diego (I call her every night since my Step-Father passed a

year ago), and was going to try to get some sleep to get rested up for whatever

was coming " next. " I tried not to be shocked when the bell rang, just calmly

said to myself, it's part of the disease and he is really going to be okay

even though he looks like he's going to pass any minute, and went in to see what

he had to say. I said, " Hello Sleeping Beauty, " that's what I call him these

days, and he said, " Wanna get up. " After explaining that it was over 24 hours

later and seeing the confusion on his face, I asked him if he was hungry,

" no, " did he have to go to the bathroom, " no, " do you hurt any where, " no. "

Then

I tried to tell him that it was bedtime for the rest of us and I needed to

get some sleep. He responded with, " Wanna get up. " I asked him what he would

do in his chair by himself and he fell asleep with his eyes open, so I tucked

him back in and went back upstairs.

He rang the bell an hour later. When I walked in he was covered up but had

his soaked diaper and PJ bottoms off and the protective padding that he was

laying on. Such strength for a man who had been in a coma type state for over

27

hours! I rang the bell upstairs again and my husband came down to help me

clean him up. After we were through he wanted to " get up " again so I explained

once more about the caregiver's bedtime and he seemed to grasp the concept for

a moment and said, " you go back to bed. " I did. He rang again every hour

after that all through the night. Same thing, " Wanna get up. " Can't. Tucked

him back in. After the 4:30 ring, my poor husband took the bell away and at

5:30 we heard the window shades being pulled down.

This has been going on all this time and I am exhausted. Hospice seems to

think he is making his " last stand " and confesses that they are " learning " about

Lewy Body from me. Ha! Two days ago they were SURE he would not make it

through the night and I said, " Just watch. "

The last of the help just left (it's 5:30 PM on, I think, Monday?) and Mr. B

is asleep in his chair because he does not want to be in his bed, and I'm

going to try to get a short nap before he rings the bell. His BP was 85/52,

pulse

was 105 (high) and the Hospice nurse said he was starting the " modeling "

(sp.?) process. She plainly stated that he is " shutting down. " He eats very

little, talks/mumbles even less and sits almost " helpless " in his chair as he

stares right through this dimension into the next.

Thank you so much for being there. I will read the rest of the messages when

I get some sleep and can think more clearly. I hope everyone will have a

wonderful Peaceful night. Love to everyone, Stevie

* * * * * *

Hi Stevie

I am praying that no news is good news today for you

and your Uncle. I am hoping and praying that you are

just busy trying to feed a very hungry man since he

missed all his meals. Just know that we care and are

praying for you. Take Care and God Bless.

Dena

[Guest guest]

stevie my dad had a bell too, whenever he needed or wanted naythign he jsut

had to ring his bell. sometimes is was a game to him, ring the bell and see

who got there first and he learned the more intensely he rang the bell teh

quicker or more people got there, gosh it was so frustrating at times, but

i really do miss that bell now. sleep when you can, laugh when you cant

sleep, good lcuk and hugs, sharon m

-- Re: Hi Stevie, just wondering how Mr. B is?

Hello Dena and All,

Yes we are still here, for the time being. You are right though...I have

been taking care of a (not so) hungry confused man who somehow remembers if

he

" rings the bell, " I will be there.

Mr. B " woke up " at 10:30 that night.....a few days ago, don't ask me what

day

because I'm too tired to figure it out now... : ) ...and wanted to get up.

He wasn't hungry, he just wanted to " get up " ! I had just finished talking

to

my Mother in San Diego (I call her every night since my Step-Father passed a

year ago), and was going to try to get some sleep to get rested up for

whatever

was coming " next. " I tried not to be shocked when the bell rang, just

calmly

said to myself, it's part of the disease and he is really going to be okay

even though he looks like he's going to pass any minute, and went in to see

what

he had to say. I said, " Hello Sleeping Beauty, " that's what I call him

these

days, and he said, " Wanna get up. " After explaining that it was over 24

hours

later and seeing the confusion on his face, I asked him if he was hungry,

" no, " did he have to go to the bathroom, " no, " do you hurt any where, " no. "

Then

I tried to tell him that it was bedtime for the rest of us and I needed to

get some sleep. He responded with, " Wanna get up. " I asked him what he

would

do in his chair by himself and he fell asleep with his eyes open, so I

tucked

him back in and went back upstairs.

He rang the bell an hour later. When I walked in he was covered up but had

his soaked diaper and PJ bottoms off and the protective padding that he was

laying on. Such strength for a man who had been in a coma type state for

over 27

hours! I rang the bell upstairs again and my husband came down to help me

clean him up. After we were through he wanted to " get up " again so I

explained

once more about the caregiver's bedtime and he seemed to grasp the concept

for

a moment and said, " you go back to bed. " I did. He rang again every hour

after that all through the night. Same thing, " Wanna get up. " Can't.

Tucked

him back in. After the 4:30 ring, my poor husband took the bell away and at

5:30 we heard the window shades being pulled down.

This has been going on all this time and I am exhausted. Hospice seems to

think he is making his " last stand " and confesses that they are " learning "

about

Lewy Body from me. Ha! Two days ago they were SURE he would not make it

through the night and I said, " Just watch. "

The last of the help just left (it's 5:30 PM on, I think, Monday?) and Mr. B

is asleep in his chair because he does not want to be in his bed, and I'm

going to try to get a short nap before he rings the bell. His BP was 85/52,

pulse

was 105 (high) and the Hospice nurse said he was starting the " modeling "

(sp.?) process. She plainly stated that he is " shutting down. " He eats

very

little, talks/mumbles even less and sits almost " helpless " in his chair as

he

stares right through this dimension into the next.

Thank you so much for being there. I will read the rest of the messages

when

I get some sleep and can think more clearly. I hope everyone will have a

wonderful Peaceful night. Love to everyone, Stevie

* * * * * *

Hi Stevie

I am praying that no news is good news today for you

and your Uncle. I am hoping and praying that you are

just busy trying to feed a very hungry man since he

missed all his meals. Just know that we care and are

praying for you. Take Care and God Bless.

Dena

[Guest guest]

Hi Stevie

I was relived to here that you are all hanging in

there. However, how are you surviving with no sleep? I

would be a total zombie. I need 7 hours every night or

I am shot. These seems to be really tough days ahead.

It would seem that Mr. B feels that his time is short.

I will be praying that God would give you peace and

comfort for these next coming days. He still sounds

like he is a strong man though. He may fools us all.

How is your poor husband coping. I know mine has gone

to work with only a few hours of sleep sometimes too.

It is a rough disease on the whole family. I'll be

praying for you all, Stevie.

Dena

--- juperant@... wrote:

> Hello Dena and All,

>

> Yes we are still here, for the time being. You are

> right though...I have

> been taking care of a (not so) hungry confused man

> who somehow remembers if he

> " rings the bell, " I will be there.

>

> Mr. B " woke up " at 10:30 that night.....a few days

> ago, don't ask me what day

> because I'm too tired to figure it out now... : )

> ...and wanted to get up.

> He wasn't hungry, he just wanted to " get up " ! I had

> just finished talking to

> my Mother in San Diego (I call her every night since

> my Step-Father passed a

> year ago), and was going to try to get some sleep to

> get rested up for whatever

> was coming " next. " I tried not to be shocked when

> the bell rang, just calmly

> said to myself, it's part of the disease and he is

> really going to be okay

> even though he looks like he's going to pass any

> minute, and went in to see what

> he had to say. I said, " Hello Sleeping Beauty, "

> that's what I call him these

> days, and he said, " Wanna get up. " After explaining

> that it was over 24 hours

> later and seeing the confusion on his face, I asked

> him if he was hungry,

> " no, " did he have to go to the bathroom, " no, " do

> you hurt any where, " no. " Then

> I tried to tell him that it was bedtime for the rest

> of us and I needed to

> get some sleep. He responded with, " Wanna get up. "

> I asked him what he would

> do in his chair by himself and he fell asleep with

> his eyes open, so I tucked

> him back in and went back upstairs.

>

> He rang the bell an hour later. When I walked in he

> was covered up but had

> his soaked diaper and PJ bottoms off and the

> protective padding that he was

> laying on. Such strength for a man who had been in

> a coma type state for over 27

> hours! I rang the bell upstairs again and my

> husband came down to help me

> clean him up. After we were through he wanted to

> " get up " again so I explained

> once more about the caregiver's bedtime and he

> seemed to grasp the concept for

> a moment and said, " you go back to bed. " I did. He

> rang again every hour

> after that all through the night. Same thing,

> " Wanna get up. " Can't. Tucked

> him back in. After the 4:30 ring, my poor husband

> took the bell away and at

> 5:30 we heard the window shades being pulled down.

>

> This has been going on all this time and I am

> exhausted. Hospice seems to

> think he is making his " last stand " and confesses

> that they are " learning " about

> Lewy Body from me. Ha! Two days ago they were SURE

> he would not make it

> through the night and I said, " Just watch. "

>

> The last of the help just left (it's 5:30 PM on, I

> think, Monday?) and Mr. B

> is asleep in his chair because he does not want to

> be in his bed, and I'm

> going to try to get a short nap before he rings the

> bell. His BP was 85/52, pulse

> was 105 (high) and the Hospice nurse said he was

> starting the " modeling "

> (sp.?) process. She plainly stated that he is

> " shutting down. " He eats very

> little, talks/mumbles even less and sits almost

> " helpless " in his chair as he

> stares right through this dimension into the next.

>

> Thank you so much for being there. I will read the

> rest of the messages when

> I get some sleep and can think more clearly. I hope

> everyone will have a

> wonderful Peaceful night. Love to everyone, Stevie

>

> * * * * * *

>

> Hi Stevie

>

> I am praying that no news is good news today for you

> and your Uncle. I am hoping and praying that you are

> just busy trying to feed a very hungry man since he

> missed all his meals. Just know that we care and are

> praying for you. Take Care and God Bless.

>

> Dena

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Oh Stevie,

I haven't read for a couple of days (busy with Dad), but my prayer's

and thoughts go out to you and your Uncle... I understand being

exhausted from having no sleep. I admire your patience. I don't

always have that during the night when I've had " NO " sleep and am

being woken up every hour. May the good LORD Bless you.

Hugs and prayers,

Debbie

>

> Hello Dena and All,

>

> Yes we are still here, for the time being. You are right

though...I have

> been taking care of a (not so) hungry confused man who somehow

remembers if he

> " rings the bell, " I will be there.

>

> Mr. B " woke up " at 10:30 that night.....a few days ago, don't ask

me what day

> because I'm too tired to figure it out now... : ) ...and wanted to

get up.

> He wasn't hungry, he just wanted to " get up " ! I had just finished

talking to

> my Mother in San Diego (I call her every night since my Step-

Father passed a

> year ago), and was going to try to get some sleep to get rested up

for whatever

> was coming " next. " I tried not to be shocked when the bell rang,

just calmly

> said to myself, it's part of the disease and he is really going to

be okay

> even though he looks like he's going to pass any minute, and went

in to see what

> he had to say. I said, " Hello Sleeping Beauty, " that's what I

call him these

> days, and he said, " Wanna get up. " After explaining that it was

over 24 hours

> later and seeing the confusion on his face, I asked him if he was

hungry,

> " no, " did he have to go to the bathroom, " no, " do you hurt any

where, " no. " Then

> I tried to tell him that it was bedtime for the rest of us and I

needed to

> get some sleep. He responded with, " Wanna get up. " I asked him

what he would

> do in his chair by himself and he fell asleep with his eyes open,

so I tucked

> him back in and went back upstairs.

>

> He rang the bell an hour later. When I walked in he was covered

up but had

> his soaked diaper and PJ bottoms off and the protective padding

that he was

> laying on. Such strength for a man who had been in a coma type

state for over 27

> hours! I rang the bell upstairs again and my husband came down to

help me

> clean him up. After we were through he wanted to " get up " again

so I explained

> once more about the caregiver's bedtime and he seemed to grasp the

concept for

> a moment and said, " you go back to bed. " I did. He rang again

every hour

> after that all through the night. Same thing, " Wanna get up. "

Can't. Tucked

> him back in. After the 4:30 ring, my poor husband took the bell

away and at

> 5:30 we heard the window shades being pulled down.

>

> This has been going on all this time and I am exhausted. Hospice

seems to

> think he is making his " last stand " and confesses that they

are " learning " about

> Lewy Body from me. Ha! Two days ago they were SURE he would not

make it

> through the night and I said, " Just watch. "

>

> The last of the help just left (it's 5:30 PM on, I think, Monday?)

and Mr. B

> is asleep in his chair because he does not want to be in his bed,

and I'm

> going to try to get a short nap before he rings the bell. His BP

was 85/52, pulse

> was 105 (high) and the Hospice nurse said he was starting

the " modeling "

> (sp.?) process. She plainly stated that he is " shutting down. "

He eats very

> little, talks/mumbles even less and sits almost " helpless " in his

chair as he

> stares right through this dimension into the next.

>

> Thank you so much for being there. I will read the rest of the

messages when

> I get some sleep and can think more clearly. I hope everyone will

have a

> wonderful Peaceful night. Love to everyone, Stevie

>

> * * * * * *

>

> Hi Stevie

>

> I am praying that no news is good news today for you

> and your Uncle. I am hoping and praying that you are

> just busy trying to feed a very hungry man since he

> missed all his meals. Just know that we care and are

> praying for you. Take Care and God Bless.

>

> Dena

>

>

>

[Guest guest]

Stevie - my thoughts & prayers continue for you and Mr. B - here's to

some much needed sleep for you!

[Guest guest]

Dear and All,

Have a moment to update.....Let's just say it's like having a new born in the

house again. Changing diapers, feeding, bathing, more dirty diapers,

bathing, checking to see if they are breathing.

Mr. B is now incontinent and sleeping and having " accidents " most of the

time. He has no concept of time or distance for that matter, and the only thing

that consoles him, for some reason, is when we have the washing machine or

dryer on in the laundry room (which is next to his room). He still tries so

hard

to do " Showtime " when the nurse comes over but he is getting weaker and

weaker.

He eats very little and drinks even less. We have stopped all meds except

for a timed release Sinemet (so he won't have RLS from stopping this drug) in

the morning and one before bedtime. He takes them only if he is awake...most of

the time he's not. I read the messages that concerned stopping meds and yes,

it is a very hard decision. I am thinking quality of life now, not quantity.

It actually seems cruel to me now to put him on amy meds because his body is

shutting down, but, it seems very natural and he is comfortable. He still

goes in and out of " coma-Lewy " and his awake time is less and less. Blood

pressure fluctuates between 68/41 and 88/60 as does his pulse, 59-105.

The Priest came for a visit yesterday and gave him the last rites and told me

that Mr. B is " fighting it " because he is unsettled it in his mind about what

is going to happen to him. Hospice people have said that they saw similar

cases where their patients did all they could to " not go " (try as they might)!

Mr. B thinks that if he wears his watch and stays out of his bed during the

day that he will be all right. It's a sad thing to watch. That's where PEACE

comes in. We must find Peace in our lives and settle our beliefs and issues

handed to us before we leave this world. That's probably why we are here?

As far as I am concerned...ha...I eat very little myself, my appetite has

decreased and hopefully the 34 pounds, that I accumulated from going to

restaurants with my Uncle everyday for the past few years, will diminish too.

...LOL ..

Hospice nurses come every day to tend to his bed sores and try to spend as

much time with me as possible for support. The caregiver I hired is still

wonderful and I am trying to get him to stay for eight hours instead of just

four. We manage to play a few rounds of Poker until Mr. B needs attention in

the

morning, but I have been too tired to play any Ping Pong. Oh well. I try to

sleep when Mr. B's asleep and I have let the dusting go until further notice.

I thank everyone for prayers said and comforting thoughts and send more

prayers right back to all of the members who are dealing with this awful

disease.

Peace everyone, Stevie

* * * * * * * * *

Stevie - my thoughts & prayers continue for you and Mr. B - here's to

some much needed sleep for you!

[Guest guest]

Hello Dena,

It's so funny that you said " he might fool us all " ....it seems that way when

he wakes up from these " coma-things " ! As if we are just going to be doing

this for a long time yet. I pray so hard that he will find the Peace that he is

looking for and know that he will be better off in the Next World/Other

Side/Heaven. Please keep him in your prayers so he will find Peace. Thank you

so

much Dena! Much, Much Peace to you, Stevie

* * * * * * *

Hi Stevie

I was relived to here that you are all hanging in

there. However, how are you surviving with no sleep? I

would be a total zombie. I need 7 hours every night or

I am shot. These seems to be really tough days ahead.

It would seem that Mr. B feels that his time is short.

I will be praying that God would give you peace and

comfort for these next coming days. He still sounds

like he is a strong man though. He may fools us all.

How is your poor husband coping. I know mine has gone

to work with only a few hours of sleep sometimes too.

It is a rough disease on the whole family. I'll be

praying for you all, Stevie.

Dena

[Guest guest]

Dear Jan,

I'm so sorry if I am responding to emails a second time....can't remember if

I did to this one or not but Thank you so much (maybe again!) for being here.

I hope all is going better for you and Jim. Have a wonderful Peaceful night,

Stevie

* * * * * * * *

Stevie, pulling the wet PJs and diapers off and the

padding underneath is something that I experience with

Jim. Someone gave me a website for PJs that zip in the

back. I gave my husband a bell once and he did the

samething. He rang it even if he didn't need help. I

took it away and got a baby monitor to hear if he was

up and needed help.

I pray for strength for you through these days. It is

so difficult to watch a LO decline.

We are all here for you Stevie and Mr. B.

Hugs, Jan

[Guest guest]

Stevie, you are in my prayers and so is Mr. B. Can the hospice nurses use

an external catheter while he sleeps now? Hope so. Arlene

[Guest guest]

Thank you again Dena. The Priest did talk to him and I think the reality of

it all is getting to him before he can actually " settle down. " It's been

trying but we get through each day doing the best we can...both of us.

He knows about the car and smiles big when I talk about going up the Coast.

I took Sharon M's advice and added the feel of the sun and wind and the clear

blue water with Catalina on the horizon and he actually closed his eyes and

had a little smile on his face, then started to snore. So cute.

Thanks again for your prayers....looks like we have someone else to add to

the growing list (Maureen's MIL Bobbie). More than happy to be a part of the

PC! Much Peace, Stevie

* * * * * * * *

Dear Stevie

My heart goes out to you as you and Mr. B walk down

what may be his last walk. I know he may not

understand

but maybe the priest or you or the hospice nurse could

speak to him regarding finding that peace he needs to

find. It must be such a sad thing to watch. I feel the

tears welling up now. Maybe is waiting for one last

ride in the convertible. Just a thought. I am not sure

how aware he is that you have the car now. I guess the

only thing and the best thing left to do is pray. That

I will continue to do Stevie. God Bless you both.

Dena

[Guest guest]

Thank you so much for the suggestion Sharon. Now the nurses ask him about

his " road trip " up the Coast. LOL Keeps a smile on his face. Thank you so

much! Much Peace, Stevie

* * * * * * * *

i am so glad he smiled at your story about him riding in hte car, i know

what you mean about the smile, dads laugh was so child like that it was a

blessing to hear him laugh every day. take care and hugs sharon m

-- Re: Re: Hi Stevie, just wondering how Mr. B is?

Thank you again Dena. The Priest did talk to him and I think the reality of

it all is getting to him before he can actually " settle down. " It's been

trying but we get through each day doing the best we can...both of us.

He knows about the car and smiles big when I talk about going up the Coast.

I took Sharon M's advice and added the feel of the sun and wind and the

clear

blue water with Catalina on the horizon and he actually closed his eyes and

had a little smile on his face, then started to snore. So cute.

[Guest guest]

Hi Stevie

How sweet. I can tell that Mr.B is a very loving man.

I will be praying still for you all. I've had a crazy

day. Sorry to be so late in reading these posts.

Dena

--- juperant@... wrote:

> Thank you again Dena. The Priest did talk to him

> and I think the reality of

> it all is getting to him before he can actually

> " settle down. " It's been

> trying but we get through each day doing the best we

> can...both of us.

>

> He knows about the car and smiles big when I talk

> about going up the Coast.

> I took Sharon M's advice and added the feel of the

> sun and wind and the clear

> blue water with Catalina on the horizon and he

> actually closed his eyes and

> had a little smile on his face, then started to

> snore. So cute.

>

> Thanks again for your prayers....looks like we have

> someone else to add to

> the growing list (Maureen's MIL Bobbie). More than

> happy to be a part of the

> PC! Much Peace, Stevie

>

> * * * * * * * *

> Dear Stevie

>

> My heart goes out to you as you and Mr. B walk down

> what may be his last walk. I know he may not

> understand

> but maybe the priest or you or the hospice nurse

> could

> speak to him regarding finding that peace he needs

> to

> find. It must be such a sad thing to watch. I feel

> the

> tears welling up now. Maybe is waiting for one last

> ride in the convertible. Just a thought. I am not

> sure

> how aware he is that you have the car now. I guess

> the

> only thing and the best thing left to do is pray.

> That

> I will continue to do Stevie. God Bless you both.

>

> Dena

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________