Re: A New Phase?

[Guest guest]

Hi, Dena,

I just wanted to let you know I am thinking of you tonight. I understand

your frustration with your mom and her not wanting to eat and drink. All we

can do is offer them food and drink, but we can't force them to eat. My dad

has pretty much quit eating, too, so I can sympathize with you on this one.

This could just be a phase with your mom. She may decide to start eating and

drinking again. Is there any possibility that she has a stomach bug or

anything like that, or any problems inside her mouth - maybe dentures that hurt

when

she chews, or a fever blister? I am just trying to think of anything that

might make her not want to eat. Please don't think it is your fault because

she is currently on a down note. That is LBD, and we can only do the best we

can do. You are a fantastic daughter, and I am sure your mom knows that. My

dad has been on such the roller coaster ride for the last year so it is just

really hard to know where you are with LBD. My dad was completely in a wheel

chair around Christmas time, and I thought that was it. He was able to get

out of the wheelchair and walk to the bathroom for several weeks. He has

since taken a major downturn and stopped eating, but we have been through major

ups and downs through the course of his disease. I am going to pray that your

mom starts on an upswing. You will be in my thoughts, and please let us

know how you and your mom are doing. I just always try to remember to take one

day at a time. It is just too overwhelming if you think to far ahead when it

comes to LBD.

Love and hugs,

Piper

[Guest guest]

Hello Dena and All,

E-Ticket indeed! I'm so sorry to hear that you are on that ride too. I

can't believe what I have witnessed with this disease and quite frankly either

can

Hospice!

I have been away from the computer for several days because a few more things

have happened that needed tending to besides Mr. B. Here's a little update:

Last time I wrote, besides the drive to San Diego, I think I was just getting

ready to call the mortuary, when, again, my Uncle " came out of it " and asked

" what's for dinner? " . It freaked out the nurse from Hospice so much that she

couldn't believe what she was seeing, so I offered her an ATIVAN to settle her

down. She looked at me and just said, " Very funny. " That was the third time

in two weeks that Mr. B went wayyyyyy down below sea level and came back

up....still breathing. It has been such a roller coaster ride and no one

believes

it until they see it for themselves!

Dena, Mr. B couldn't swallow, refused food & water, was incontinent, couldn't

stand up or walk, looked straight ahead and didn't answer when talked to,

shallow breathed on and off, talked to " someone " towards the ceiling, had

modeling (fingers, joints started turning blue), couldn't be woken up for long

periods of time, lost 10 more pounds and even told me one night that this was

" theee

night " , and Hospice was sure that the next call they would get would be from

me...telling them it was over. Not this week.

It's scary, sad, unnerving, irritating, eerie, emotional, physically

draining, very lonely, and just plain confusing when you go through this over

and

over. You have to constantly " readjust " your emotions and that is what gets you

" exhausted " !

I have it down pat now........ha!......the last time he was in this

" Lewy-Coma thing, " we took him off of all drugs (mainly because he couldn't

swallow),

except Hytrin to relax the prostate so he can urinate. When he goes into these

" fits " it usually starts out with pain in his shoulder/neck area (we were

giving him Roxanal for the pain) then he would get deeply " comatose-Lewy "

shortly

after that. We stopped giving him Roxinal because I think it worked

adversely on him....made him hallucinate, nightmares, kept him awake all night,

aggressive and contrary, and we also stopped the Sinemet completely. Now he

sleeps

less, is more coherent, not at all contrary or aggressive, nightmares are

there but have slowed down, and he can answer a question now without referring

to

the imaginary dogs outside of the breakfast nook window. We give him plain

old Tylenol Extra Strength for the pain in his shoulders and he seems to be

comfortable with that.

Yesterday, he started the " Coma-Lewy " thing again....shoulder pain, staring,

can't get up, etc....but.....he is still coherent and not one bit aggressive.

His blood pressure has gone up and down, he says he feels " not so good, " but

at least he can communicate better than before, with all those meds, and is

fully aware of what is going on around him.

He is at the " end stage " of this insidious disease and from what I have read

from the messages posted on this board in the past several days, I do agree

with....sorry don't know who it was (maybe )......but they said that meds

don't really work after a while, especially at the end stage. And as far as

" funeral arrangements " .....make them now and get it over with while YOU are

still coherent. The roller coaster ride WILL come to an end and it's an awful

thing to go through after the fact, and it's true, you don't have time to

properly mourn because you are so busy " taking care of things. " I made plans

yesterday and the chore is done. Now, I will take each day as it comes and not

have

to worry about " what to do " when the time comes. Good grief....I sound like a

commercial.

Dena, you are certainly not alone and I send you Peace to find the calmness

within as you ride the coaster. Lots of hugs and prayers to everyone on this

board. I am certain I will not be able to respond to all the messages that I

would like to because of my absence these past few days....but I want everyone

to know that all messages are " invaluable " to us and future Caregivers.

God Bless everyone and may you all have a Peaceful weekend! Stevie

P.S....I DID take that ride to San Diego with the top down, heater seats on

high, and Bob Seeger all the way. It was WONDERFUL! " Getting away " is

therapeutic and ever so necessary!

* * * * * * * * *

Hi Everyone

I just wanted to get a little advise or maybe I just

need to hear friendly voice, so to speak.

My mom (83)has been changing as it would seem this

week. On Tuesday night she refused to eat dinner,

which she has done before. Then on Wed,Thurs and

today. She was drank very little and eaten very

little. She does not speak anything that is

intelligent at all. Only mumbling. For a few weeks now

she has not been able to understand me and I cannot

understand her. It is like two people from different

planets trying to communicate. She cried today for the

second time when we tried to give her a shower in the

shower. So I have decided to try the bed bath thing. I

have also decided to give up trying to take her to the

hairdresser once every other week. It is just too hard

and scary with one person to get her into a SUV all

alone. She is a small lady on 5'2 and about 100lbs. I

have tried to hold on to these things for far too long

now. I am going to try to give up taking her to the

toilet also. She can hardly take the walk from the

doorway to the toilet. I basically walk her. She has

not walked alone in 8 months. The only thing is I have

the wrong kind of diapers, so I will have to find time

to get out and get new ones. My caregiver has been on

vacation this week too. Today my mom did not wake up

until 12noon. She has slept most of the time since her

bath too. I sense a change and it is tough to deal

with. I have been waking up several nights this week

at 3:30-4:00am with a clammy feeling and feel like

my heart is racing. Is this anxiety? I just keep

feeling like she is failing now and somehow it is my

fault. I have tried and tried to get her to drink and

eat. I have put the straw in her mouth and she will

not suck on it. So I put the glass to her lips and she

push her lips together and the water or whatever pours

out the side of her mouth. She does not want to chew

anything so we are using soft foods too. She did eat

1/2 a banana earlier today. That was encouraging. I

know this is a roller coaster ride, but my nerves are

getting shot. Have your LO's snapped out of it before

and began eating and drinking again? I know Stevie has

had the " E ticket " of roller coaster rides with Mr.B.

I just do not know what to think. I am trying to be

calm, but I guess deep down I am a mess. Thanks for

listening.

Dena

[Guest guest]

Dear Dena,

You have been so good, here for everyone else. Now it is your turn.

Like you say, you have been trying to hang on far too long to things as they

were. Your

mother has different needs now as you identify. Go with them as you seem to be

doing.

Meet her needs as best you can, that is the best you can do. Love her, hug her,

do the

best you can for her.

Yes, you are dealing with anxiety. So am I, awakening in the middle of the

night panicky,

but then there also other things at play here as well as dealing with end of

life. I hope this

is the worst you are dealing with now. Know it is not your fault that she is not

eating or

drinking. End result, do you send her for medical intervention or deal with

this turn as

best you can for her?

Checking for a UTI might rule in or out that as a cause for this significant

change.

Thinking of you.

>

> Hi Everyone

>

> I just wanted to get a little advise or maybe I just

> need to hear friendly voice, so to speak.

>

> My mom (83)has been changing as it would seem this

> week. On Tuesday night she refused to eat dinner,

> which she has done before. Then on Wed,Thurs and

> today. She was drank very little and eaten very

> little. She does not speak anything that is

> intelligent at all. Only mumbling. For a few weeks now

> she has not been able to understand me and I cannot

> understand her. It is like two people from different

> planets trying to communicate. She cried today for the

> second time when we tried to give her a shower in the

> shower. So I have decided to try the bed bath thing. I

> have also decided to give up trying to take her to the

> hairdresser once every other week. It is just too hard

> and scary with one person to get her into a SUV all

> alone. She is a small lady on 5'2 and about 100lbs. I

> have tried to hold on to these things for far too long

> now. I am going to try to give up taking her to the

> toilet also. She can hardly take the walk from the

> doorway to the toilet. I basically walk her. She has

> not walked alone in 8 months. The only thing is I have

> the wrong kind of diapers, so I will have to find time

> to get out and get new ones. My caregiver has been on

> vacation this week too. Today my mom did not wake up

> until 12noon. She has slept most of the time since her

> bath too. I sense a change and it is tough to deal

> with. I have been waking up several nights this week

> at 3:30-4:00am with a clammy feeling and feel like

> my heart is racing. Is this anxiety? I just keep

> feeling like she is failing now and somehow it is my

> fault. I have tried and tried to get her to drink and

> eat. I have put the straw in her mouth and she will

> not suck on it. So I put the glass to her lips and she

> push her lips together and the water or whatever pours

> out the side of her mouth. She does not want to chew

> anything so we are using soft foods too. She did eat

> 1/2 a banana earlier today. That was encouraging. I

> know this is a roller coaster ride, but my nerves are

> getting shot. Have your LO's snapped out of it before

> and began eating and drinking again? I know Stevie has

> had the " E ticket " of roller coaster rides with Mr.B.

> I just do not know what to think. I am trying to be

> calm, but I guess deep down I am a mess. Thanks for

> listening.

>

> Dena

>

> __________________________________________________

>

[Guest guest]

Dena: I would suggest you ask your doctor if Hospice is a service you can

use now. Then maybe it would be easier to deal with your feelings at this

difficult time. They know how to counsel you and help your mother.

My thoughts are with you.

Myrna in Missouri

wife of Jerry (70) DZ AD1997, LBD2004

[Guest guest]

Hi Myrna

We are on Hospice now. Since January 10th 2006. So I

guess I should give someone a call. Thanks for your

response.

Dena

--- myrnajohnson wrote:

> Dena: I would suggest you ask your doctor if

> Hospice is a service you can

> use now. Then maybe it would be easier to deal with

> your feelings at this

> difficult time. They know how to counsel you and

> help your mother.

> My thoughts are with you.

> Myrna in Missouri

> wife of Jerry (70) DZ AD1997, LBD2004

>

>

>

__________________________________________________

[Guest guest]

Dena,

I can't give you any advice but I will keep you in my prayers...

Hugs,

Debbie

>

> Hi Everyone

>

> I just wanted to get a little advise or maybe I just

> need to hear friendly voice, so to speak.

>

> My mom (83)has been changing as it would seem this

> week. On Tuesday night she refused to eat dinner,

> which she has done before. Then on Wed,Thurs and

> today. She was drank very little and eaten very

> little. She does not speak anything that is

> intelligent at all. Only mumbling. For a few weeks now

> she has not been able to understand me and I cannot

> understand her. It is like two people from different

> planets trying to communicate. She cried today for the

> second time when we tried to give her a shower in the

> shower. So I have decided to try the bed bath thing. I

> have also decided to give up trying to take her to the

> hairdresser once every other week. It is just too hard

> and scary with one person to get her into a SUV all

> alone. She is a small lady on 5'2 and about 100lbs. I

> have tried to hold on to these things for far too long

> now. I am going to try to give up taking her to the

> toilet also. She can hardly take the walk from the

> doorway to the toilet. I basically walk her. She has

> not walked alone in 8 months. The only thing is I have

> the wrong kind of diapers, so I will have to find time

> to get out and get new ones. My caregiver has been on

> vacation this week too. Today my mom did not wake up

> until 12noon. She has slept most of the time since her

> bath too. I sense a change and it is tough to deal

> with. I have been waking up several nights this week

> at 3:30-4:00am with a clammy feeling and feel like

> my heart is racing. Is this anxiety? I just keep

> feeling like she is failing now and somehow it is my

> fault. I have tried and tried to get her to drink and

> eat. I have put the straw in her mouth and she will

> not suck on it. So I put the glass to her lips and she

> push her lips together and the water or whatever pours

> out the side of her mouth. She does not want to chew

> anything so we are using soft foods too. She did eat

> 1/2 a banana earlier today. That was encouraging. I

> know this is a roller coaster ride, but my nerves are

> getting shot. Have your LO's snapped out of it before

> and began eating and drinking again? I know Stevie has

> had the " E ticket " of roller coaster rides with Mr.B.

> I just do not know what to think. I am trying to be

> calm, but I guess deep down I am a mess. Thanks for

> listening.

>

> Dena

>

> __________________________________________________

>

[Guest guest]

Dear

Thanks for your message. I will contact the hospice

nurse and see if she can test her for a UTI. Good

suggestion.

Dena

--- stimtimminss wrote:

> Dear Dena,

> You have been so good, here for everyone else. Now

> it is your turn.

> Like you say, you have been trying to hang on far

> too long to things as they were. Your

> mother has different needs now as you identify. Go

> with them as you seem to be doing.

> Meet her needs as best you can, that is the best you

> can do. Love her, hug her, do the

> best you can for her.

> Yes, you are dealing with anxiety. So am I,

> awakening in the middle of the night panicky,

> but then there also other things at play here as

> well as dealing with end of life. I hope this

> is the worst you are dealing with now. Know it is

> not your fault that she is not eating or

> drinking. End result, do you send her for medical

> intervention or deal with this turn as

> best you can for her?

> Checking for a UTI might rule in or out that as a

> cause for this significant change.

> Thinking of you.

>

>

>

> >

> > Hi Everyone

> >

> > I just wanted to get a little advise or maybe I

> just

> > need to hear friendly voice, so to speak.

> >

> > My mom (83)has been changing as it would seem this

> > week. On Tuesday night she refused to eat dinner,

> > which she has done before. Then on Wed,Thurs and

> > today. She was drank very little and eaten very

> > little. She does not speak anything that is

> > intelligent at all. Only mumbling. For a few weeks

> now

> > she has not been able to understand me and I

> cannot

> > understand her. It is like two people from

> different

> > planets trying to communicate. She cried today for

> the

> > second time when we tried to give her a shower in

> the

> > shower. So I have decided to try the bed bath

> thing. I

> > have also decided to give up trying to take her to

> the

> > hairdresser once every other week. It is just too

> hard

> > and scary with one person to get her into a SUV

> all

> > alone. She is a small lady on 5'2 and about

> 100lbs. I

> > have tried to hold on to these things for far too

> long

> > now. I am going to try to give up taking her to

> the

> > toilet also. She can hardly take the walk from the

> > doorway to the toilet. I basically walk her. She

> has

> > not walked alone in 8 months. The only thing is I

> have

> > the wrong kind of diapers, so I will have to find

> time

> > to get out and get new ones. My caregiver has been

> on

> > vacation this week too. Today my mom did not wake

> up

> > until 12noon. She has slept most of the time since

> her

> > bath too. I sense a change and it is tough to deal

> > with. I have been waking up several nights this

> week

> > at 3:30-4:00am with a clammy feeling and feel

> like

> > my heart is racing. Is this anxiety? I just keep

> > feeling like she is failing now and somehow it is

> my

> > fault. I have tried and tried to get her to drink

> and

> > eat. I have put the straw in her mouth and she

> will

> > not suck on it. So I put the glass to her lips and

> she

> > push her lips together and the water or whatever

> pours

> > out the side of her mouth. She does not want to

> chew

> > anything so we are using soft foods too. She did

> eat

> > 1/2 a banana earlier today. That was encouraging.

> I

> > know this is a roller coaster ride, but my nerves

> are

> > getting shot. Have your LO's snapped out of it

> before

> > and began eating and drinking again? I know Stevie

> has

> > had the " E ticket " of roller coaster rides with

> Mr.B.

> > I just do not know what to think. I am trying to

> be

> > calm, but I guess deep down I am a mess. Thanks

> for

> > listening.

> >

> > Dena

> >

> > __________________________________________________

> >

[Guest guest]

Hi Debbie

Thanks for your prayers.

Dena

--- or Debbie wrote:

> Dena,

> I can't give you any advice but I will keep you in

> my prayers...

> Hugs,

> Debbie

>

>

> >

> > Hi Everyone

> >

> > I just wanted to get a little advise or maybe I

> just

> > need to hear friendly voice, so to speak.

> >

> > My mom (83)has been changing as it would seem this

> > week. On Tuesday night she refused to eat dinner,

> > which she has done before. Then on Wed,Thurs and

> > today. She was drank very little and eaten very

> > little. She does not speak anything that is

> > intelligent at all. Only mumbling. For a few weeks

> now

> > she has not been able to understand me and I

> cannot

> > understand her. It is like two people from

> different

> > planets trying to communicate. She cried today for

> the

> > second time when we tried to give her a shower in

> the

> > shower. So I have decided to try the bed bath

> thing. I

> > have also decided to give up trying to take her to

> the

> > hairdresser once every other week. It is just too

> hard

> > and scary with one person to get her into a SUV

> all

> > alone. She is a small lady on 5'2 and about

> 100lbs. I

> > have tried to hold on to these things for far too

> long

> > now. I am going to try to give up taking her to

> the

> > toilet also. She can hardly take the walk from the

> > doorway to the toilet. I basically walk her. She

> has

> > not walked alone in 8 months. The only thing is I

> have

> > the wrong kind of diapers, so I will have to find

> time

> > to get out and get new ones. My caregiver has been

> on

> > vacation this week too. Today my mom did not wake

> up

> > until 12noon. She has slept most of the time since

> her

> > bath too. I sense a change and it is tough to deal

> > with. I have been waking up several nights this

> week

> > at 3:30-4:00am with a clammy feeling and feel

> like

> > my heart is racing. Is this anxiety? I just keep

> > feeling like she is failing now and somehow it is

> my

> > fault. I have tried and tried to get her to drink

> and

> > eat. I have put the straw in her mouth and she

> will

> > not suck on it. So I put the glass to her lips and

> she

> > push her lips together and the water or whatever

> pours

> > out the side of her mouth. She does not want to

> chew

> > anything so we are using soft foods too. She did

> eat

> > 1/2 a banana earlier today. That was encouraging.

> I

> > know this is a roller coaster ride, but my nerves

> are

> > getting shot. Have your LO's snapped out of it

> before

> > and began eating and drinking again? I know Stevie

> has

> > had the " E ticket " of roller coaster rides with

> Mr.B.

> > I just do not know what to think. I am trying to

> be

> > calm, but I guess deep down I am a mess. Thanks

> for

> > listening.

> >

> > Dena

> >

> > __________________________________________________

> >

[Guest guest]

Dena,

It sounds to me like your mom has entered the final stage of this cruel

process. I understand the anxiety and frustration as I went through this with

my Dad just a few months ago prior to his passing away. Not wanting food or

drink is one of the tell tell signs that the body is getting ready to shut down.

Now, that is not to say that she won't rebound as we have see others here do

that, but with her age and the sound of her decline, it just sounds very close

to the way my Dad was at the end.

The waking up in the wee hours of the morning as you have does sound like

anxiety as well. Does your personal doctor know your situation with your Mom?

I kept my physician informed every six months about the progress of my Dad as I

am prone to have anxiety attacks myself and wanted to have some help if I needed

it without having to explain the WHOLE story at the time I needed the help the

most. Lucky for me I was able to handle the anxiety but somedays were very

tough.

You have been on a tough road. The next turn in the road could be a very

tough one with lots of pot holes and low shoulders. There are many of us here

keeping you in our thoughts and prayers. It seems that several LOs are in the

end stage here in this group. We are all family here connected by the

geneaology of Lewyville so when one is hurting or scared or needing a hug - we

are here to help! Considered yourself

((((((((((hugged)))))))))))) from North Carolina!!!

Love from a fellow Lewyville Sister!!!

na

Dena LEAVITT wrote:

Hi Everyone

I just wanted to get a little advise or maybe I just

need to hear friendly voice, so to speak.

My mom (83)has been changing as it would seem this

week. On Tuesday night she refused to eat dinner,

which she has done before. Then on Wed,Thurs and

today. She was drank very little and eaten very

little. She does not speak anything that is

intelligent at all. Only mumbling. For a few weeks now

she has not been able to understand me and I cannot

understand her. It is like two people from different

planets trying to communicate. She cried today for the

second time when we tried to give her a shower in the

shower. So I have decided to try the bed bath thing. I

have also decided to give up trying to take her to the

hairdresser once every other week. It is just too hard

and scary with one person to get her into a SUV all

alone. She is a small lady on 5'2 and about 100lbs. I

have tried to hold on to these things for far too long

now. I am going to try to give up taking her to the

toilet also. She can hardly take the walk from the

doorway to the toilet. I basically walk her. She has

not walked alone in 8 months. The only thing is I have

the wrong kind of diapers, so I will have to find time

to get out and get new ones. My caregiver has been on

vacation this week too. Today my mom did not wake up

until 12noon. She has slept most of the time since her

bath too. I sense a change and it is tough to deal

with. I have been waking up several nights this week

at 3:30-4:00am with a clammy feeling and feel like

my heart is racing. Is this anxiety? I just keep

feeling like she is failing now and somehow it is my

fault. I have tried and tried to get her to drink and

eat. I have put the straw in her mouth and she will

not suck on it. So I put the glass to her lips and she

push her lips together and the water or whatever pours

out the side of her mouth. She does not want to chew

anything so we are using soft foods too. She did eat

1/2 a banana earlier today. That was encouraging. I

know this is a roller coaster ride, but my nerves are

getting shot. Have your LO's snapped out of it before

and began eating and drinking again? I know Stevie has

had the " E ticket " of roller coaster rides with Mr.B.

I just do not know what to think. I am trying to be

calm, but I guess deep down I am a mess. Thanks for

listening.

Dena

__________________________________________________

[Guest guest]

Don't have much advice - just wanted you to know that you & your mom

are in my thoughts and prayers. My mom is in pretty much the same

stage - although I'm still holding on to the hope that she'll " come

back " once the post-surgery drugs are out of her system... Last of the

drugs was 2/19. Visited yesterday and both eyes were open - but it was

a blank stare - and no words... She's back on the dementia floor

(instead of the hospital-like floor) at the nursing home - so I'm happy

with that b/c the nurses are so much nicer on the dementia floor.

(Although, mom was lucky to have 2 great nurses on the other floor -

one who performed wonders with feeding and the other who would sing to

her)

[Guest guest]

Hi Piper

Thank you for your nice reply. I do not think my Mom

has any mouth problems as I brush her teeth every

morning and evening and their is no indication of pain

or bleeding. She could have a stomach bug, but there

is no indication of that either. She was awake maybe

one hour yesterday and slept all night without any

pills all day. She woke up on her own this morning and

has taken one sip of water. Wants no food. She is make

to sleep again. I am in the " waiting room " now. Just

waiting to see what is next. She may just snap out of

it today or tomorrow. Who knows? This is a cruel

disease. Thanks for your thoughts.

Dena

--- ppark4915@... wrote:

> Hi, Dena,

>

> I just wanted to let you know I am thinking of you

> tonight. I understand

> your frustration with your mom and her not wanting

> to eat and drink. All we

> can do is offer them food and drink, but we can't

> force them to eat. My dad

> has pretty much quit eating, too, so I can

> sympathize with you on this one.

> This could just be a phase with your mom. She may

> decide to start eating and

> drinking again. Is there any possibility that she

> has a stomach bug or

> anything like that, or any problems inside her mouth

> - maybe dentures that hurt when

> she chews, or a fever blister? I am just trying to

> think of anything that

> might make her not want to eat. Please don't think

> it is your fault because

> she is currently on a down note. That is LBD, and

> we can only do the best we

> can do. You are a fantastic daughter, and I am

> sure your mom knows that. My

> dad has been on such the roller coaster ride for

> the last year so it is just

> really hard to know where you are with LBD. My dad

> was completely in a wheel

> chair around Christmas time, and I thought that was

> it. He was able to get

> out of the wheelchair and walk to the bathroom for

> several weeks. He has

> since taken a major downturn and stopped eating,

> but we have been through major

> ups and downs through the course of his disease. I

> am going to pray that your

> mom starts on an upswing. You will be in my

> thoughts, and please let us

> know how you and your mom are doing. I just always

> try to remember to take one

> day at a time. It is just too overwhelming if you

> think to far ahead when it

> comes to LBD.

>

> Love and hugs,

>

> Piper

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi Stevie

So glad to hear that you had a nice trip to San Diego.

It is still a nice day to head up the coast today. But

sadly rain is on the way they say. I have a Dr. appt

in L.A. on Monday so it will probably pour.

I feel like I am not in the " end stages " but the

" forever stages " . This disease is sending me over the

edge. Not really. I can only imagine what your ride is

like. It is a roller coaster that we can't get off of.

I just remind myself that my mom looks comfortable and

content and even though we cannot communicate much

anymore she is here, if in shell only, and I will try

to continue this for as long as I can.

Thanks for reminding me that I am not alone.

Love to you and Mr. B

Dena

--- juperant@... wrote:

> Hello Dena and All,

>

> E-Ticket indeed! I'm so sorry to hear that you are

> on that ride too. I

> can't believe what I have witnessed with this

> disease and quite frankly either can

> Hospice!

>

> I have been away from the computer for several days

> because a few more things

> have happened that needed tending to besides Mr. B.

> Here's a little update:

>

> Last time I wrote, besides the drive to San Diego, I

> think I was just getting

> ready to call the mortuary, when, again, my Uncle

> " came out of it " and asked

> " what's for dinner? " . It freaked out the nurse from

> Hospice so much that she

> couldn't believe what she was seeing, so I offered

> her an ATIVAN to settle her

> down. She looked at me and just said, " Very funny. "

> That was the third time

> in two weeks that Mr. B went wayyyyyy down below sea

> level and came back

> up....still breathing. It has been such a roller

> coaster ride and no one believes

> it until they see it for themselves!

>

> Dena, Mr. B couldn't swallow, refused food & water,

> was incontinent, couldn't

> stand up or walk, looked straight ahead and didn't

> answer when talked to,

> shallow breathed on and off, talked to " someone "

> towards the ceiling, had

> modeling (fingers, joints started turning blue),

> couldn't be woken up for long

> periods of time, lost 10 more pounds and even told

> me one night that this was " theee

> night " , and Hospice was sure that the next call they

> would get would be from

> me...telling them it was over. Not this week.

>

> It's scary, sad, unnerving, irritating, eerie,

> emotional, physically

> draining, very lonely, and just plain confusing when

> you go through this over and

> over. You have to constantly " readjust " your

> emotions and that is what gets you

> " exhausted " !

>

> I have it down pat now........ha!......the last time

> he was in this

> " Lewy-Coma thing, " we took him off of all drugs

> (mainly because he couldn't swallow),

> except Hytrin to relax the prostate so he can

> urinate. When he goes into these

> " fits " it usually starts out with pain in his

> shoulder/neck area (we were

> giving him Roxanal for the pain) then he would get

> deeply " comatose-Lewy " shortly

> after that. We stopped giving him Roxinal because I

> think it worked

> adversely on him....made him hallucinate,

> nightmares, kept him awake all night,

> aggressive and contrary, and we also stopped the

> Sinemet completely. Now he sleeps

> less, is more coherent, not at all contrary or

> aggressive, nightmares are

> there but have slowed down, and he can answer a

> question now without referring to

> the imaginary dogs outside of the breakfast nook

> window. We give him plain

> old Tylenol Extra Strength for the pain in his

> shoulders and he seems to be

> comfortable with that.

>

> Yesterday, he started the " Coma-Lewy " thing

> again....shoulder pain, staring,

> can't get up, etc....but.....he is still coherent

> and not one bit aggressive.

> His blood pressure has gone up and down, he says he

> feels " not so good, " but

> at least he can communicate better than before, with

> all those meds, and is

> fully aware of what is going on around him.

>

> He is at the " end stage " of this insidious disease

> and from what I have read

> from the messages posted on this board in the past

> several days, I do agree

> with....sorry don't know who it was (maybe

> )......but they said that meds

> don't really work after a while, especially at the

> end stage. And as far as

> " funeral arrangements " .....make them now and get it

> over with while YOU are

> still coherent. The roller coaster ride WILL come to

> an end and it's an awful

> thing to go through after the fact, and it's true,

> you don't have time to

> properly mourn because you are so busy " taking care

> of things. " I made plans

> yesterday and the chore is done. Now, I will take

> each day as it comes and not have

> to worry about " what to do " when the time comes.

> Good grief....I sound like a

> commercial.

>

> Dena, you are certainly not alone and I send you

> Peace to find the calmness

> within as you ride the coaster. Lots of hugs and

> prayers to everyone on this

> board. I am certain I will not be able to respond

> to all the messages that I

> would like to because of my absence these past few

> days....but I want everyone

> to know that all messages are " invaluable " to us and

> future Caregivers.

>

> God Bless everyone and may you all have a Peaceful

> weekend! Stevie

>

> P.S....I DID take that ride to San Diego with the

> top down, heater seats on

> high, and Bob Seeger all the way. It was WONDERFUL!

> " Getting away " is

> therapeutic and ever so necessary!

>

> * * * * * * * * *

> Hi Everyone

>

> I just wanted to get a little advise or maybe I just

> need to hear friendly voice, so to speak.

>

> My mom (83)has been changing as it would seem this

> week. On Tuesday night she refused to eat dinner,

> which she has done before. Then on Wed,Thurs and

> today. She was drank very little and eaten very

> little. She does not speak anything that is

> intelligent at all. Only mumbling. For a few weeks

> now

> she has not been able to understand me and I cannot

> understand her. It is like two people from different

> planets trying to communicate. She cried today for

> the

> second time when we tried to give her a shower in

> the

> shower. So I have decided to try the bed bath thing.

> I

> have also decided to give up trying to take her to

> the

> hairdresser once every other week. It is just too

> hard

> and scary with one person to get her into a SUV all

> alone. She is a small lady on 5'2 and about 100lbs.

> I

> have tried to hold on to these things for far too

> long

> now. I am going to try to give up taking her to the

> toilet also. She can hardly take the walk from the

> doorway to the toilet. I basically walk her. She has

> not walked alone in 8 months. The only thing is I

> have

> the wrong kind of diapers, so I will have to find

> time

> to get out and get new ones. My caregiver has been

> on

> vacation this week too. Today my mom did not wake up

> until 12noon. She has slept most of the time since

> her

> bath too. I sense a change and it is tough to deal

> with. I have been waking up several nights this week

> at 3:30-4:00am with a clammy feeling and feel like

> my heart is racing. Is this anxiety? I just keep

> feeling like she is failing now and somehow it is my

> fault. I have tried and tried to get her to drink

> and

> eat. I have put the straw in her mouth and she will

> not suck on it. So I put the glass to her lips and

> she

> push her lips together and the water or whatever

> pours

> out the side of her mouth. She does not want to chew

> anything so we are using soft foods too. She did eat

> 1/2 a banana earlier today. That was encouraging. I

> know this is a roller coaster ride, but my nerves

> are

> getting shot. Have your LO's snapped out of it

> before

> and began eating and drinking again? I know Stevie

> has

> had the " E ticket " of roller coaster rides with

> Mr.B.

> I just do not know what to think. I am trying to be

> calm, but I guess deep down I am a mess. Thanks for

> listening.

>

> Dena

>

>

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hi na

Things look a little better with morning I guess.

Maybe she is going to rebound again. You just get

yourself ready to handle death (as well as you can)

and bingo back to square one. So with much relief you

start another day. This has got to be harder on me

than her at this point. She seems content.

Thank you for the encouraging words. I am so glad I am

not alone. Thank you God for the Internet.

Dena

--- na McNamara wrote:

> Dena,

> It sounds to me like your mom has entered the

> final stage of this cruel process. I understand the

> anxiety and frustration as I went through this with

> my Dad just a few months ago prior to his passing

> away. Not wanting food or drink is one of the tell

> tell signs that the body is getting ready to shut

> down. Now, that is not to say that she won't

> rebound as we have see others here do that, but with

> her age and the sound of her decline, it just sounds

> very close to the way my Dad was at the end.

>

> The waking up in the wee hours of the morning as

> you have does sound like anxiety as well. Does your

> personal doctor know your situation with your Mom?

> I kept my physician informed every six months about

> the progress of my Dad as I am prone to have anxiety

> attacks myself and wanted to have some help if I

> needed it without having to explain the WHOLE story

> at the time I needed the help the most. Lucky for

> me I was able to handle the anxiety but somedays

> were very tough.

>

> You have been on a tough road. The next turn in

> the road could be a very tough one with lots of pot

> holes and low shoulders. There are many of us here

> keeping you in our thoughts and prayers. It seems

> that several LOs are in the end stage here in this

> group. We are all family here connected by the

> geneaology of Lewyville so when one is hurting or

> scared or needing a hug - we are here to help!

> Considered yourself

> ((((((((((hugged)))))))))))) from North

> Carolina!!!

>

> Love from a fellow Lewyville Sister!!!

> na

>

>

>

> Dena LEAVITT wrote:

> Hi Everyone

>

> I just wanted to get a little advise or maybe I just

> need to hear friendly voice, so to speak.

>

> My mom (83)has been changing as it would seem this

> week. On Tuesday night she refused to eat dinner,

> which she has done before. Then on Wed,Thurs and

> today. She was drank very little and eaten very

> little. She does not speak anything that is

> intelligent at all. Only mumbling. For a few weeks

> now

> she has not been able to understand me and I cannot

> understand her. It is like two people from different

> planets trying to communicate. She cried today for

> the

> second time when we tried to give her a shower in

> the

> shower. So I have decided to try the bed bath thing.

> I

> have also decided to give up trying to take her to

> the

> hairdresser once every other week. It is just too

> hard

> and scary with one person to get her into a SUV all

> alone. She is a small lady on 5'2 and about 100lbs.

> I

> have tried to hold on to these things for far too

> long

> now. I am going to try to give up taking her to the

> toilet also. She can hardly take the walk from the

> doorway to the toilet. I basically walk her. She has

> not walked alone in 8 months. The only thing is I

> have

> the wrong kind of diapers, so I will have to find

> time

> to get out and get new ones. My caregiver has been

> on

> vacation this week too. Today my mom did not wake up

> until 12noon. She has slept most of the time since

> her

> bath too. I sense a change and it is tough to deal

> with. I have been waking up several nights this week

> at 3:30-4:00am with a clammy feeling and feel like

> my heart is racing. Is this anxiety? I just keep

> feeling like she is failing now and somehow it is my

> fault. I have tried and tried to get her to drink

> and

> eat. I have put the straw in her mouth and she will

> not suck on it. So I put the glass to her lips and

> she

> push her lips together and the water or whatever

> pours

> out the side of her mouth. She does not want to chew

> anything so we are using soft foods too. She did eat

> 1/2 a banana earlier today. That was encouraging. I

> know this is a roller coaster ride, but my nerves

> are

> getting shot. Have your LO's snapped out of it

> before

> and began eating and drinking again? I know Stevie

> has

> had the " E ticket " of roller coaster rides with

> Mr.B.

> I just do not know what to think. I am trying to be

> calm, but I guess deep down I am a mess. Thanks for

> listening.

>

> Dena

>

> __________________________________________________

>

[Guest guest]

Hi

Thank you for your thoughts and prayers. You have had

a rough go also. Bamn, in the world of LBD. It is very

sudden sometimes. It was for me too. My mom was on

Aricept, but living alone and then I found her on the

floor one morning. She was hospitalized for 4 days

with dehydration and never returned to the same

person. I quite my job and became her full time

caregiver.There were glimmers of the person she was,

but not the same at all. I try to just focus on today.

We all just do the best we can. I will continue to

think of and pray for you and your mom too.

Dena

--- octoryrose wrote:

> Don't have much advice - just wanted you to know

> that you & your mom

> are in my thoughts and prayers. My mom is in pretty

> much the same

> stage - although I'm still holding on to the hope

> that she'll " come

> back " once the post-surgery drugs are out of her

> system... Last of the

> drugs was 2/19. Visited yesterday and both eyes were

> open - but it was

> a blank stare - and no words... She's back on the

> dementia floor

> (instead of the hospital-like floor) at the nursing

> home - so I'm happy

> with that b/c the nurses are so much nicer on the

> dementia floor.

> (Although, mom was lucky to have 2 great nurses on

> the other floor -

> one who performed wonders with feeding and the other

> who would sing to

> her)

>

>

>

>

__________________________________________________

[Guest guest]

Hello na,

I feel for Dena, I have been going through this roller coaster thing for

almost four months now. Because Mr. B couldn't swallow while he was in this

" coma " thing we took him off all meds and kept him off. Now he is doing a bit

better. He is by no means cured, he just doesn't hallucinate as bad or go into

such deep comas now. How long did your Dad go through this stage and did you

take him off of any meds?

Much Peace to you and yours, Stevie

* * * * * * * *

> Dena,

> It sounds to me like your mom has entered the

> final stage of this cruel process. I understand the

> anxiety and frustration as I went through this with

> my Dad just a few months ago prior to his passing

> away. Not wanting food or drink is one of the tell

> tell signs that the body is getting ready to shut

> down. Now, that is not to say that she won't

> rebound as we have see others here do that, but with

> her age and the sound of her decline, it just sounds

> very close to the way my Dad was at the end.

>

> The waking up in the wee hours of the morning as

> you have does sound like anxiety as well. Does your

> personal doctor know your situation with your Mom?

> I kept my physician informed every six months about

> the progress of my Dad as I am prone to have anxiety

> attacks myself and wanted to have some help if I

> needed it without having to explain the WHOLE story

> at the time I needed the help the most. Lucky for

> me I was able to handle the anxiety but somedays

> were very tough.

>

> You have been on a tough road. The next turn in

> the road could be a very tough one with lots of pot

> holes and low shoulders. There are many of us here

> keeping you in our thoughts and prayers. It seems

> that several LOs are in the end stage here in this

> group. We are all family here connected by the

> geneaology of Lewyville so when one is hurting or

> scared or needing a hug - we are here to help!

> Considered yourself

> ((((((((((hugged)))))))))))) from North

> Carolina!!!

>

> Love from a fellow Lewyville Sister!!!

> na

[Guest guest]

DENA, I COULD HAVE WRITTEN THE EXACT EMAIL TO THE LETTER ABOUT MY MAMA. SHE

DOING THE EXACT SAME THINGS AS YOURS AND BOY IT HURTS TO WATCH AND GO THROUGH.

SO KNOW YOU ARE NOT ALONE. SATURDAY EVENING I JUST WANTED TO RUN OR WISH I WOULD

WAKE UP FROM THIS NIGHTMARE. I PRAYED FOR THE FEELINGS I HAVE TO GO BACK TO

ACCEPTANCE SO I CAN HANDLE IT. I WANT TO HANDLE IT WELL BUT I JUST DON'T KNOW

THANKS FOR SHARING.

MIDGE

Dena LEAVITT wrote:

Dear

Thanks for your message. I will contact the hospice

nurse and see if she can test her for a UTI. Good

suggestion.

Dena

--- stimtimminss wrote:

> Dear Dena,

> You have been so good, here for everyone else. Now

> it is your turn.

> Like you say, you have been trying to hang on far

> too long to things as they were. Your

> mother has different needs now as you identify. Go

> with them as you seem to be doing.

> Meet her needs as best you can, that is the best you

> can do. Love her, hug her, do the

> best you can for her.

> Yes, you are dealing with anxiety. So am I,

> awakening in the middle of the night panicky,

> but then there also other things at play here as

> well as dealing with end of life. I hope this

> is the worst you are dealing with now. Know it is

> not your fault that she is not eating or

> drinking. End result, do you send her for medical

> intervention or deal with this turn as

> best you can for her?

> Checking for a UTI might rule in or out that as a

> cause for this significant change.

> Thinking of you.

>

>

>

> >

> > Hi Everyone

> >

> > I just wanted to get a little advise or maybe I

> just

> > need to hear friendly voice, so to speak.

> >

> > My mom (83)has been changing as it would seem this

> > week. On Tuesday night she refused to eat dinner,

> > which she has done before. Then on Wed,Thurs and

> > today. She was drank very little and eaten very

> > little. She does not speak anything that is

> > intelligent at all. Only mumbling. For a few weeks

> now

> > she has not been able to understand me and I

> cannot

> > understand her. It is like two people from

> different

> > planets trying to communicate. She cried today for

> the

> > second time when we tried to give her a shower in

> the

> > shower. So I have decided to try the bed bath

> thing. I

> > have also decided to give up trying to take her to

> the

> > hairdresser once every other week. It is just too

> hard

> > and scary with one person to get her into a SUV

> all

> > alone. She is a small lady on 5'2 and about

> 100lbs. I

> > have tried to hold on to these things for far too

> long

> > now. I am going to try to give up taking her to

> the

> > toilet also. She can hardly take the walk from the

> > doorway to the toilet. I basically walk her. She

> has

> > not walked alone in 8 months. The only thing is I

> have

> > the wrong kind of diapers, so I will have to find

> time

> > to get out and get new ones. My caregiver has been

> on

> > vacation this week too. Today my mom did not wake

> up

> > until 12noon. She has slept most of the time since

> her

> > bath too. I sense a change and it is tough to deal

> > with. I have been waking up several nights this

> week

> > at 3:30-4:00am with a clammy feeling and feel

> like

> > my heart is racing. Is this anxiety? I just keep

> > feeling like she is failing now and somehow it is

> my

> > fault. I have tried and tried to get her to drink

> and

> > eat. I have put the straw in her mouth and she

> will

> > not suck on it. So I put the glass to her lips and

> she

> > push her lips together and the water or whatever

> pours

> > out the side of her mouth. She does not want to

> chew

> > anything so we are using soft foods too. She did

> eat

> > 1/2 a banana earlier today. That was encouraging.

> I

> > know this is a roller coaster ride, but my nerves

> are

> > getting shot. Have your LO's snapped out of it

> before

> > and began eating and drinking again? I know Stevie

> has

> > had the " E ticket " of roller coaster rides with

> Mr.B.

> > I just do not know what to think. I am trying to

> be

> > calm, but I guess deep down I am a mess. Thanks

> for

> > listening.

> >

> > Dena

> >

> > __________________________________________________

> >

[Guest guest]

Hi Midge

Sorry you are going through the same thing. You have

it right it is a nightmare to say the least. I just

want to get off this ride and feel " back to normal "

for a few days. It is exhausting.

Dena

--- MIDGE GREER wrote:

> DENA, I COULD HAVE WRITTEN THE EXACT EMAIL TO THE

> LETTER ABOUT MY MAMA. SHE DOING THE EXACT SAME

> THINGS AS YOURS AND BOY IT HURTS TO WATCH AND GO

> THROUGH. SO KNOW YOU ARE NOT ALONE. SATURDAY EVENING

> I JUST WANTED TO RUN OR WISH I WOULD WAKE UP FROM

> THIS NIGHTMARE. I PRAYED FOR THE FEELINGS I HAVE TO

> GO BACK TO ACCEPTANCE SO I CAN HANDLE IT. I WANT TO

> HANDLE IT WELL BUT I JUST DON'T KNOW THANKS FOR

> SHARING.

>

> MIDGE

>

> Dena LEAVITT wrote:

> Dear

>

> Thanks for your message. I will contact the hospice

> nurse and see if she can test her for a UTI. Good

> suggestion.

>

> Dena

>

> --- stimtimminss wrote:

>

> > Dear Dena,

> > You have been so good, here for everyone else.

> Now

> > it is your turn.

> > Like you say, you have been trying to hang on far

> > too long to things as they were. Your

> > mother has different needs now as you identify.

> Go

> > with them as you seem to be doing.

> > Meet her needs as best you can, that is the best

> you

> > can do. Love her, hug her, do the

> > best you can for her.

> > Yes, you are dealing with anxiety. So am I,

> > awakening in the middle of the night panicky,

> > but then there also other things at play here as

> > well as dealing with end of life. I hope this

> > is the worst you are dealing with now. Know it is

> > not your fault that she is not eating or

> > drinking. End result, do you send her for medical

> > intervention or deal with this turn as

> > best you can for her?

> > Checking for a UTI might rule in or out that as a

> > cause for this significant change.

> > Thinking of you.

> >

> >

> >

> > >

> > > Hi Everyone

> > >

> > > I just wanted to get a little advise or maybe I

> > just

> > > need to hear friendly voice, so to speak.

> > >

> > > My mom (83)has been changing as it would seem

> this

> > > week. On Tuesday night she refused to eat

> dinner,

> > > which she has done before. Then on Wed,Thurs and

> > > today. She was drank very little and eaten very

> > > little. She does not speak anything that is

> > > intelligent at all. Only mumbling. For a few

> weeks

> > now

> > > she has not been able to understand me and I

> > cannot

> > > understand her. It is like two people from

> > different

> > > planets trying to communicate. She cried today

> for

> > the

> > > second time when we tried to give her a shower

> in

> > the

> > > shower. So I have decided to try the bed bath

> > thing. I

> > > have also decided to give up trying to take her

> to

> > the

> > > hairdresser once every other week. It is just

> too

> > hard

> > > and scary with one person to get her into a SUV

> > all

> > > alone. She is a small lady on 5'2 and about

> > 100lbs. I

> > > have tried to hold on to these things for far

> too

> > long

> > > now. I am going to try to give up taking her to

> > the

> > > toilet also. She can hardly take the walk from

> the

> > > doorway to the toilet. I basically walk her. She

> > has

> > > not walked alone in 8 months. The only thing is

> I

> > have

> > > the wrong kind of diapers, so I will have to

> find

> > time

> > > to get out and get new ones. My caregiver has

> been

> > on

> > > vacation this week too. Today my mom did not

> wake

> > up

> > > until 12noon. She has slept most of the time

> since

> > her

> > > bath too. I sense a change and it is tough to

> deal

> > > with. I have been waking up several nights this

> > week

> > > at 3:30-4:00am with a clammy feeling and feel

> > like

> > > my heart is racing. Is this anxiety? I just keep

> > > feeling like she is failing now and somehow it

> is

> > my

> > > fault. I have tried and tried to get her to

> drink

> > and

> > > eat. I have put the straw in her mouth and she

> > will

> > > not suck on it. So I put the glass to her lips

> and

> > she

> > > push her lips together and the water or whatever

> > pours

> > > out the side of her mouth. She does not want to

> > chew

> > > anything so we are using soft foods too. She did

> > eat

> > > 1/2 a banana earlier today. That was

> encouraging.

> > I

> > > know this is a roller coaster ride, but my

> nerves

> > are

> > > getting shot. Have your LO's snapped out of it

> > before

> > > and began eating and drinking again? I know

> Stevie

> > has

> > > had the " E ticket " of roller coaster rides with

> > Mr.B.

> > > I just do not know what to think. I am trying to

> > be

> > > calm, but I guess deep down I am a mess. Thanks

> > for

> > > listening.

> > >

> > > Dena

> > >

> > >

> __________________________________________________

> > >