Re: What a Wonderful Day....

[Guest guest]

Oh dear ,

How exciting to hear this news! I love to hear these

kind of Miracles, even if it is for an hour, a day or

whatever, it is so worth hearing amongst all the

things we generally hear. Thank you so much for

sharing this moment. Some of the " Luck of the Irish "

must have been sprinkled on your mom today. Maybe a

little Leprechaun hanging out in her room.

I hope you have many more wonderful moments like this.

Jan

--- octoryrose wrote:

> This AM I received a call from the nursing home by

> the head nurse.

> She told me that my mother asked her to call me to

> find out when I

> was coming for my visit.

>

> WHAT?! ARE YOU KIDDING?! THAT'S AMAZING!!

>

> You have to understand my mother has been in the

> LBD-coma like state

> for a long time after the biopsy. Many family

> members didn't think

> she'd make it. The family priest called me to say

> that he thought mom

> would pass in a couple of days. And then, the past

> week she has been

> close to how she was before the biopsy. This action

> (asking the head

> nurse to call to see when I was coming) is very

> close to how she was

> before the stay at the hospital - the hospital where

> she received the

> wrong meds. She was calling me all the time before

> that hospital stay

> and then that action/desire stopped when she

> received the wrong

> meds...

>

> I arrived to find my mother in the dining room. And

> she started to

> cry immediately. She is saying so many new words and

> phrases I can't

> even believe it!

>

> We went into her room for a bit - she said things

> like " You have a

> beautiful voice, " When we were listening to

> Boccelli

> she said " This music is beautiful. " I said to her

> that she made me

> happy. And she said " How happy are you? " She'd say

> new words and

> phrases, she'd hold my hands, she cried (which is

> making us want to

> get her on an ant-depressant real soon), she

> zippered up my jacket,

> she straightened out the blanket on the bed, etc.

>

> We went down to her PT b/c those that work with her

> down there wanted

> to show me how much she has improved the past few

> days. They're

> working on getting her out of the jerri chair into a

> regular

> wheelchair. They call mom their MIP - Most Improved

> Patient. They

> told me that mom " hangs out " with them in the PT

> room for 2-3 hours.

>

> I don't know what happened?! It's like she woke up

> from a coma. I

> don't know if it's a Lewy 'good day' and she'll go

> back to where she

> was. I don't know if it's b/c she has all the drugs

> out of her system

> and this is how she is now. I usually go in and

> visit before work on

> Friday - and stayed longer this AM b/c of her

> improvement - and of

> course didn't want to leave, but had to get to work.

> And would love

> to be with her tomorrow - but already have it

> planned to visit Sunday

> and I do need one day for my chores and to relax...

> But also if this

> is a temporary thing don't want to miss out...

>

> My mother's sister changed her plans and went in for

> lunch today

> instead of waiting for after work. Brought mom a

> green carnation -

> and asked my mother what special occassion does this

> green carnation

> represent - and mom said St. 's Day. Can you

> believe it? It's

> definitely a miracle.

>

> Everyone at the nursing home was so excited. The

> nurses, the aides,

> the other personnel. They kept stopping us to talk

> to mom. They all

> want to take it all in. Everyone couldn't stop

> smiling. The Reverand

> at the nursing home told me that she has been

> bringing mom to their

> mass and she picks up on the prayers and does the

> sign of the cross.

>

> It's like I'm dreaming! It's absolutely amazing!

> It's a miracle! Even

> if it was for just a day - it's a miracle! Mom was

> able to express

> some of her feelings towards me. I was able to

> explain things to her.

> We'd go around the home and people would say " hi "

> and mom would

> say " hello, how are you? "

>

> Unbelievable... I'm still in shock over the whole

> day... And I hope

> she'll be the same come Sunday when I visit... I'm

> bringing projects

> (got my adult coloring books)! I'm bringing the

> massage/music

> therapist! Another aunt & cousin intend to visit

> that day too!

>

> ; loving daughter of Maureen of Boston, MA;

> finally diagnosed

> with LBD on 2/06 after also being diagnosed with

> everything from AD

> to Vascular Dementia caused by mini strokes to

> Binswengers...; was

> victim to rapid progression from Risperidone (or

> combination of

> Risperidone with other drugs OR possibly received

> another " bad drug "

> when she was observed/tested in a hospital in

> 10/05); in a NH since

> 11/05.

>

>

>

>

>

__________________________________________________

[Guest guest]

Yes, what a wonderful day for you. We have gone the journey with you, celebrate

this

wonderful day as well. Lewy Body good day, drugs out of her system, brain

swelling

subsided, all possibly at play here. You have nurtured her, cared for her,

loved her

through this post op time. You both deserve this very special reuniting! Share

our love

with her.

, Oakville, Ont.

>

> This AM I received a call from the nursing home by the head nurse.

> She told me that my mother asked her to call me to find out when I

> was coming for my visit.

>

> WHAT?! ARE YOU KIDDING?! THAT'S AMAZING!!

>

> You have to understand my mother has been in the LBD-coma like state

> for a long time after the biopsy. Many family members didn't think

> she'd make it. The family priest called me to say that he thought mom

> would pass in a couple of days. And then, the past week she has been

> close to how she was before the biopsy. This action (asking the head

> nurse to call to see when I was coming) is very close to how she was

> before the stay at the hospital - the hospital where she received the

> wrong meds. She was calling me all the time before that hospital stay

> and then that action/desire stopped when she received the wrong

> meds...

>

> I arrived to find my mother in the dining room. And she started to

> cry immediately. She is saying so many new words and phrases I can't

> even believe it!

>

> We went into her room for a bit - she said things like " You have a

> beautiful voice, " When we were listening to Boccelli

> she said " This music is beautiful. " I said to her that she made me

> happy. And she said " How happy are you? " She'd say new words and

> phrases, she'd hold my hands, she cried (which is making us want to

> get her on an ant-depressant real soon), she zippered up my jacket,

> she straightened out the blanket on the bed, etc.

>

> We went down to her PT b/c those that work with her down there wanted

> to show me how much she has improved the past few days. They're

> working on getting her out of the jerri chair into a regular

> wheelchair. They call mom their MIP - Most Improved Patient. They

> told me that mom " hangs out " with them in the PT room for 2-3 hours.

>

> I don't know what happened?! It's like she woke up from a coma. I

> don't know if it's a Lewy 'good day' and she'll go back to where she

> was. I don't know if it's b/c she has all the drugs out of her system

> and this is how she is now. I usually go in and visit before work on

> Friday - and stayed longer this AM b/c of her improvement - and of

> course didn't want to leave, but had to get to work. And would love

> to be with her tomorrow - but already have it planned to visit Sunday

> and I do need one day for my chores and to relax... But also if this

> is a temporary thing don't want to miss out...

>

> My mother's sister changed her plans and went in for lunch today

> instead of waiting for after work. Brought mom a green carnation -

> and asked my mother what special occassion does this green carnation

> represent - and mom said St. 's Day. Can you believe it? It's

> definitely a miracle.

>

> Everyone at the nursing home was so excited. The nurses, the aides,

> the other personnel. They kept stopping us to talk to mom. They all

> want to take it all in. Everyone couldn't stop smiling. The Reverand

> at the nursing home told me that she has been bringing mom to their

> mass and she picks up on the prayers and does the sign of the cross.

>

> It's like I'm dreaming! It's absolutely amazing! It's a miracle! Even

> if it was for just a day - it's a miracle! Mom was able to express

> some of her feelings towards me. I was able to explain things to her.

> We'd go around the home and people would say " hi " and mom would

> say " hello, how are you? "

>

> Unbelievable... I'm still in shock over the whole day... And I hope

> she'll be the same come Sunday when I visit... I'm bringing projects

> (got my adult coloring books)! I'm bringing the massage/music

> therapist! Another aunt & cousin intend to visit that day too!

>

> ; loving daughter of Maureen of Boston, MA; finally diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid progression from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05.

>

[Guest guest]

,

It was so good to read your email. I am later than most as I had problems with

my serice, but as I read I can hear the excitement in your voice.

I hope you get to enjoy lots more of the same so you can have some memories to

help ease the way for when things aren't quite as fine. You worked hard to try

and make it happen and do what ever you could. You and she do deserve the fruit

of all your hard work.

Hugs and give her one for us too! And tell her lots of people wish her well.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

What a Wonderful Day....

[Guest guest]

This is wonderful. Ah, the ups and downs of the Lewy Roller Coaster. Just when

you think you've got it all figured out, it changes course. One thing we never

lose is hope. Keep hoping, . Sometimes the pay off is great.

Kath

Daughter of Marguerite (known as Maggie), diagnosed in 2002. Now living in a

nursing home after breaking her hip in Jan 05. Huge bedsore that is still

healing after a year of being in a bad nursing home for 5 weeks, but it is

healing and I thought it might have killed her, but instead she bounced back and

it is a quarter of the size it was.

octoryrose wrote:

This AM I received a call from the nursing home by the head nurse.

She told me that my mother asked her to call me to find out when I

was coming for my visit.

WHAT?! ARE YOU KIDDING?! THAT'S AMAZING!!

You have to understand my mother has been in the LBD-coma like state

for a long time after the biopsy. Many family members didn't think

she'd make it. The family priest called me to say that he thought mom

would pass in a couple of days. And then, the past week she has been

close to how she was before the biopsy. This action (asking the head

nurse to call to see when I was coming) is very close to how she was

before the stay at the hospital - the hospital where she received the

wrong meds. She was calling me all the time before that hospital stay

and then that action/desire stopped when she received the wrong

meds...

I arrived to find my mother in the dining room. And she started to

cry immediately. She is saying so many new words and phrases I can't

even believe it!

We went into her room for a bit - she said things like " You have a

beautiful voice, " When we were listening to Boccelli

she said " This music is beautiful. " I said to her that she made me

happy. And she said " How happy are you? " She'd say new words and

phrases, she'd hold my hands, she cried (which is making us want to

get her on an ant-depressant real soon), she zippered up my jacket,

she straightened out the blanket on the bed, etc.

We went down to her PT b/c those that work with her down there wanted

to show me how much she has improved the past few days. They're

working on getting her out of the jerri chair into a regular

wheelchair. They call mom their MIP - Most Improved Patient. They

told me that mom " hangs out " with them in the PT room for 2-3 hours.

I don't know what happened?! It's like she woke up from a coma. I

don't know if it's a Lewy 'good day' and she'll go back to where she

was. I don't know if it's b/c she has all the drugs out of her system

and this is how she is now. I usually go in and visit before work on

Friday - and stayed longer this AM b/c of her improvement - and of

course didn't want to leave, but had to get to work. And would love

to be with her tomorrow - but already have it planned to visit Sunday

and I do need one day for my chores and to relax... But also if this

is a temporary thing don't want to miss out...

My mother's sister changed her plans and went in for lunch today

instead of waiting for after work. Brought mom a green carnation -

and asked my mother what special occassion does this green carnation

represent - and mom said St. 's Day. Can you believe it? It's

definitely a miracle.

Everyone at the nursing home was so excited. The nurses, the aides,

the other personnel. They kept stopping us to talk to mom. They all

want to take it all in. Everyone couldn't stop smiling. The Reverand

at the nursing home told me that she has been bringing mom to their

mass and she picks up on the prayers and does the sign of the cross.

It's like I'm dreaming! It's absolutely amazing! It's a miracle! Even

if it was for just a day - it's a miracle! Mom was able to express

some of her feelings towards me. I was able to explain things to her.

We'd go around the home and people would say " hi " and mom would

say " hello, how are you? "

Unbelievable... I'm still in shock over the whole day... And I hope

she'll be the same come Sunday when I visit... I'm bringing projects

(got my adult coloring books)! I'm bringing the massage/music

therapist! Another aunt & cousin intend to visit that day too!

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid progression from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

Welcome to LBDcaregivers.

[Guest guest]

Hello everyone,

I am new to this LBD List, and appreciate being invited.

My husband has AD thus far. But, he is displaying signs of LBD. I am trying

to learn all I can about AD and LBD.

I appreciate the LBD site you have posted Carol R. It is a good site. Thank

you.

In the future, when I have more time, I will converse a little more, and

talk about things that are happening related to LBD. I am eager for your

responses.

Imogene

In a message dated 3/18/2006 5:28:06 AM Central Standard Time,

twomido@... writes:

,

It was so good to read your email. I am later than most as I had problems

with my serice, but as I read I can hear the excitement in your voice.

I hope you get to enjoy lots more of the same so you can have some memories

to help ease the way for when things aren't quite as fine. You worked hard

to try and make it happen and do what ever you could. You and she do deserve

the fruit of all your hard work.

Hugs and give her one for us too! And tell her lots of people wish her well.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

-----Original Message-----

From: octoryrose

Sent: Fri, 17 Mar 2006 15:23:13 -0800

To: LBDcaregivers

Subject: What a Wonderful Day....

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

[Guest guest]

Thanks for the reminder of saving this message - I'm going to do

exactly that - I wish I had a video for my time with her yesterday, it

was that awesome.

>

> :

>

> I am so happy for you. I could feel you beaming with new energy. I

truly hope that this is more than just a one day thing for you. Save

your sent e-mail to the group. Re-read it and remember this day when

things are not going as well.

>

> Love & blessings

>

> in Cresswell ON

> (long distance CG to Margaret in Toronto, born 1930, diag LBD 01/2005)

[Guest guest]

It may have been the " luck of the Irish " - her brother who passed away

in May was born on St. 's Day - maybe it was his hand from

above that brought the luck...

>

> Oh dear ,

> How exciting to hear this news! I love to hear these

> kind of Miracles, even if it is for an hour, a day or

> whatever, it is so worth hearing amongst all the

> things we generally hear. Thank you so much for

> sharing this moment. Some of the " Luck of the Irish "

> must have been sprinkled on your mom today. Maybe a

> little Leprechaun hanging out in her room.

> I hope you have many more wonderful moments like this.

> Jan

[Guest guest]

And apparently it wasn't just Friday - when I told the PT that my

mother asked the head nurse to call me to find out when I was coming

the PT told me she had been asking for me the day before too. I feel

so special! And it was the past few days that they were seeing all

the drastic improvement in PT. All the aides on mom's floor would

stop and say " Your mother was asking for you this AM (yesterday) (all

day). " It was so exciting for the aides to witness mom's 'come back'

too. I can't wait to see her tomorrow - I'm hoping I'll see some of

the same tomorrow...

>

> Yes, what a wonderful day for you. We have gone the journey with

you, celebrate this

> wonderful day as well. Lewy Body good day, drugs out of her

system,

brain swelling

> subsided, all possibly at play here. You have nurtured her, cared

for her, loved her

> through this post op time. You both deserve this very special

reuniting! Share our love

> with her.

> , Oakville, Ont.

>

[Guest guest]

I hope I did have a hand in this - I hope all of my efforts (e.g.

toys, visits, getting mom's friends & family to visit, meetings with

doctors, research, finding the 'angel' (the massage/music therapist)

etc.) (although small in comparison to those here who care for their

LOs at home) did help mom. Because it gives me hope. And it makes me

feel so much better than all the guilt I've had. Guilt over the fact

that we put her in that hospital back in October in the first place.

I know it's what they call 'false guilt' but all guilt hurts

nonetheless - and this is a MUCH BETTER FEELING. :)

>

> ,

>

> It was so good to read your email. I am later than most as I had

problems with my serice, but as I read I can hear the excitement in

your voice.

>

> I hope you get to enjoy lots more of the same so you can have some

memories to help ease the way for when things aren't quite as fine.

You worked hard to try and make it happen and do what ever you

could. You and she do deserve the fruit of all your hard work.

>

> Hugs and give her one for us too! And tell her lots of people wish

her well.

>

> Donna R

>

[Guest guest]

You're absolutely right. Never lose hope. Having hope has been

keeping me together all this time. Eventhough other family members

seemed to have lost hope - and were trying to talk me into

their 'reality'. That I needed to have some 'reality' to the

situation. I couldn't/wouldn't lose hope and it's paid off. Thank

you.

>

> This is wonderful. Ah, the ups and downs of the Lewy Roller

Coaster. Just when you think you've got it all figured out, it

changes course. One thing we never lose is hope. Keep hoping,

. Sometimes the pay off is great.

>

> Kath

> Daughter of Marguerite (known as Maggie), diagnosed in 2002. Now

living in a nursing home after breaking her hip in Jan 05. Huge

bedsore that is still healing after a year of being in a bad nursing

home for 5 weeks, but it is healing and I thought it might have

killed her, but instead she bounced back and it is a quarter of the

size it was.

>

[Guest guest]

Thank you....

You know what? I've been thinking that my mother's day on Friday was

the best day TO DATE in the nursing home - even before the biopsy. At

least when you add in her MIP (most improved patient) criteria from

PT. I'm wondering if it's because she's got ALL the meds out of her

system - before the biopsy she was on Seroquil for her aggitation -

but she wasn't really " aggitated " she was just moving around and

restless - maybe even Seroquil is unnecessary at this time for my

mother... I look forward to my visit today - hoping that I see some

of the same as Friday...

> >

> > ,

> >

> > It was so good to read your email. I am later than most as I

had

> problems with my serice, but as I read I can hear the excitement

in

> your voice.

> >

> > I hope you get to enjoy lots more of the same so you can have

some

> memories to help ease the way for when things aren't quite as

fine.

> You worked hard to try and make it happen and do what ever you

> could. You and she do deserve the fruit of all your hard work.

> >

> > Hugs and give her one for us too! And tell her lots of people

wish

> her well.

> >

> > Donna R

> >

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

I'm happy to report that yesterday's visit was much of the same as

Friday... I'm now wondering if it's because mom is off Seroquil too.

She doesn't seem to be experiencing the rapid leg syndrome as much

now either. Maybe Seroquil was limiting mom's improvement - at least

in regards to her PT. I would say " Mom? " and she'd say " Yes, dear. "

Mom had her massage - the therapist was shocked with the change. I'm

going to email the nursing home my observations and maybe we'll hold

off on ALL antipsychotics at this point. I attempted to have mom

color in the adult coloring book, but she wouldn't participate and

then she said " I'm afraid of messing it up. " She's such a

perfectionist - if it's not perfect, she doesn't want to even

attempt. I tried to convince her that it was just for fun - that it

doesn't matter if it isn't perfect... Then she just got tired and I

left b/c she needed her nap. But overall another successful day. Her

aide who dresses her in the a.m. and was getting her ready for her

nap kept commenting on what a nice lady she is. And told me the story

about mom 'fixing' her untucked outfit for her - how cute!

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid progression from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05.

>

> And apparently it wasn't just Friday - when I told the PT that my

> mother asked the head nurse to call me to find out when I was

coming

> the PT told me she had been asking for me the day before too. I

feel

> so special! And it was the past few days that they were seeing all

> the drastic improvement in PT. All the aides on mom's floor would

> stop and say " Your mother was asking for you this AM (yesterday)

(all

> day). " It was so exciting for the aides to witness mom's 'come

back'

> too. I can't wait to see her tomorrow - I'm hoping I'll see some of

> the same tomorrow...

>

[Guest guest]

I'm so pleased for you that things are going well with your mum.

You sound so close to each other. Enjoy every minute and long may it

continue.

love

Áine

> >

> > And apparently it wasn't just Friday - when I told the PT that my

> > mother asked the head nurse to call me to find out when I was

> coming

> > the PT told me she had been asking for me the day before too. I

> feel

> > so special! And it was the past few days that they were seeing all

> > the drastic improvement in PT. All the aides on mom's floor would

> > stop and say " Your mother was asking for you this AM (yesterday)

> (all

> > day). " It was so exciting for the aides to witness mom's 'come

> back'

> > too. I can't wait to see her tomorrow - I'm hoping I'll see some of

> > the same tomorrow...

>

> >

>

[Guest guest]

Yes, I agree, it took me a bit to convince the doctor and nh that my

mom didn't need all they had her on either, but they are now reaping

the rewards of her great behavior/personality now that she is on low

dose and off some others.

>

> ,

>

> I had Mom on next to no drugs and she did fine. While the nh

wasn't happy at first, they soon learned she was not much of a

problem without them.

>

> Donna R

>

> Do you want to read more about Lewy Body? You can also read the

Thistle, the LBD Newsletter. Just click on:

>

> http://www.lewybodydementia.org

>

>

> Re: What a Wonderful Day....

>

>

>

>

>