Re: Stevie

[Guest guest]

Thank you Sandie for your warm thoughts. The challenge of being the " strong

person " is ever present and I'm afraid I have discovered a tear in the fabric.

A tiny little hole that leaks a bit of unbearable heartbreak and sadness

every now and then. I find comfort in writing, pictures, and sharing an event

that we all must endure, and I am ever so happy that you all are here. Thank

you. Peace again and again, Stevie

* * * * * * * *

No worries. And, thank you for continuing to come to

the group and post the days with your uncle. You truly

will be blessed from all your caregiving. -

Continue to love your uncle " til the end " , take notes of

what changes he still goes through and Kia Kaha -

(Stay Strong).

There is a reason we go through good times and difficult

times in life - this way our hearts know what others are

going through. A silver lining in every day life.

Many heartfelt hugs-

Sandie

[Guest guest]

Hi Stevie

How fun!! I would enjoy a ride up the coast about now.

But I would probably sleep most of the way today. My

mom was awake until 6:15 this morning. Almost 24

hours. Then she slept until 9:00. So I feel a little

wiped out It is a nice dream though. I will continue

to keep you in my prayers.

Dena

--- juperant@... wrote:

> Hello again Dena.....Trying to catch up on all the

> messages I missed! I have

> had my eye on a 1995 Silver Mercedes Convertible

> since 1995 but waited till

> now for the price to go down to get it. LOL That's

> the only way to do it!

> Would LOVE to have ridden in my Uncle's '39

> Packard...but I wasn't born yet.

>

> I have always loved convertibles, just never had one

> of my own. Your

> Father's '32 Buick sounds interesting. A drive up

> the Coast in that would be fun!

> I'm just about ready to have some fun. Have a

> wonderful Peaceful evening....(I

> think winter is finally here! LOL) Stevie

>

> * * * * * * * *

> Hi Stevie

>

> I was just wondering what kind of convertible you

> own?

> My father was an old care collector and I have

> inherited two of his old cars. 1932 Buick with a

> rumble seat and 1955 Doretti made in England. Made

> by

> the same people who made the Jaguar. This is a

> convertible also. It needs lots of TLC.

>

> Dena

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thank you Dena for your much needed continued prayers! One of these days!

Much Peace (and sleep) to you, Stevie

* * * * * * * *

Hi Stevie

How fun!! I would enjoy a ride up the coast about now.

But I would probably sleep most of the way today. My

mom was awake until 6:15 this morning. Almost 24

hours. Then she slept until 9:00. So I feel a little

wiped out It is a nice dream though. I will continue

to keep you in my prayers.

Dena

[Guest guest]

Stevie:

I hope the drive to San Diego works out for you. I have a cousin who lives in

San Diego. When my Mum & I went to her wedding many moons ago, we flew to LA

and drove down the coast. We stayed at Del Mar at a really nice B & B. It was

probably 15-20 years ago and it was October, but the memory is vivid and I can

just about picture you driving along with the top down and the tunes blaring.

Bob Seeger works for me - but something from Easy Rider keeps going through my

head - Oh I know .... " Born to be Wild " !

Here's hoping Mr B is in fine form today.

juperant@... wrote: Thank you so much for your concern . If all is

" stable " with Mr. B

tomorrow, I am going to drive to San Diego (as I have done for the past year to

help my Mother), but instead of the fast, congested 5 Freeway I am going to

take

the 101 Coastal Drive....78 miles! Hopefully it will be a sunny day and even

if it does rain a bit, the top is stayin' down! The CD player is already

loaded and ready to go. Any requests? LOL I'm sure Bob Seeger will be a

singin'.

Thank you so much again for being here! Much, much Peace to you, Stevie

P.S....burrrrrrrrrrr up there in Canada!

* * * * * * * * *

Stevie:

I have been reading all your posts with interest and concern. You must be

exhausted. I can tell by your messages that you feel a great deal of love for

your Uncle (I love the Mr. but you must take a little time to take care of

YOU.

Give Mr. B a big hug from Canada.

where it is -14 dgr C.

I think thats about 7 dgr F. so

58 dgr seems pretty darned warm to me

[Guest guest]

Thank you Stevie. Your support means more than words

can say right now. The hugs are greatly appreciated when

going through dad's days.

Hugs and prayers of strength to you and Mr. B-

Sandie

Des Moines, IA

-- Re:

Beautiful Sandie....many hugs to you right now! Stevie

* * * * * *

Hi, again, -

Well, coincidence or not, my dad was also given Ativan.

It came later in his journey though and there was no

turning back.

Let's turn back to the first nursing home. He was there

from September 1999 to April 2000. He was aggressive

and combative most of the time there. He had lost most

ability to walk and talk. He aged YEARS while there.

He had been in and out of the psychiatric unit as the

NH didn't know how to deal with dad.

(yes, it was a neuropsychologist that did the testing. My

brother and I weren't able to go in yet by the description

we were given after the testing, it is the same your dad

went through)

I started looking for another NH as the current one

wasn't able to deal with dad. Dad had begun to eat

and was learning how to walk again...he was prevailing

with the PEG tube so he was sent to the hospital to

have the PEG tube taken out and transferred to another

NH. He lived in Carlisle Care Center from April 4, 2000

until September 4, 2002. Carlisle also couldn't deal with

dad's disease. He was sent back and forth to the

psychiatric unit - we were on a first name basis with

the staff there. His meds were always adjusted and he was

sent back, over and over again. He had been prescribed

Ativan and I had no idea at the time this was harmful

to my dad and LBD. I joined this group January 26, 2002

and meds were being discussed, with Ativan as a major

harmful drug. I called the neurologist that had diagnosed

dad and he said to have it decreased and stopped. See,

this neurologist wasn't able to follow dad's case to the

NH's as they have a physician that oversees the patients.

BIG MISTAKE!! The neurologist, Dr. Hamilton, did care

about my dad and was concerned about his cares so

as I had mentioned, he told me to have the Ativan decreased

and then stopped and we would then start Exelon. The

NH fought this. They called a meeting with a room full

of their staff along with some corporate people, and

only told me of this meeting after I was ready to leave

from visiting my dad. They wanted to " help " my dad

and wanted to know how. They said the reason dad

was having such a tough time was because I wanted

the Ativan stopped. That just wasn't true, and the reason

dad was struggling so badly was because he had been

given Ativan for months, maybe close to a year. I didn't

have Internet access nor support from any family

members so I was unaware.

The Ativan was decreased and stopped, and Exelon

started. Dad was still aggressive but was more alert

and did talk a bit from time to time. Not always real

understandable, yet more than he had for quite some time.

The damage had already been done and dad's

progression continued. He was losing weight and

lost quite a bit by June of that year (2002). The ability

to talk stopped after a few weeks. He was still

combative and aggressive, he cried most of the

time, was fearful and seemed to still have hallucinations.

His gait was more pronounced and he was more

stiff and rigid. From June to September 4, 2002

dad was more stooped forward, very stiff and rigid,

slowed down on eating, and was spiraling downward.

September 4, 2002 he was transferred back to the

psychiatric unit, via my truck. Carlisle wanted him

out and hadn't even called for transportation. By the

next morning a letter was issued for an " Involuntary

Discharge " meaning dad was being kicked out. I, alone,

took dad, admitted him and he immediately changed.

He couldn't feed himself, stopped walking, and couldn't

stand. He was starting to contort. He hadn't used a

bathroom for months.

While at the psychiatric unit for a few days my dad

stopped eating. One morning I tried feeding him

breakfast and he clenched his jaw, turned his head

and grunted a " NO " . I tried again but his head stayed

turned, jaw clenched. I had the food taken away. I

tried feeding dad lunch and the same thing happened

only this time his arm and hand came flailing at the

utensil as if to say " What part of no don't you understand! "

I got it. My dad didn't want to eat and wasn't going to eat.

I asked if he wanted me to have the food taken away,

he looked at me and grunted a " yes " . I told dad I knew

what he was doing and " it " was ok. I would honor his

decision and make sure everyone else did as well. He

reached his hand out the best he could and I reached

for him, we cried together as we knew what was going

to happen, but I also knew this was what he wanted.

A meeting was called and I called my brother to attend.

I had been Power Of Attorney over dad's financial and

medical decisions for a few years so the decision was

mine. Should we insert another PEG tube?? I answered

" NO. " The doctor agreed and together we agreed we

wouldn't gain anything. Even though dad struggled

with a dementia and it could be argued, but it appeard

dad knew what he was doing. It seemed he had made

a decision to " win his battle with LBD. " So it was.

Dad was transferred one last time, to a NH 40

minutes from here, on Tuesday, September 17, 2002.

Hospice took dad on as a patient and he was given meds

only to keep him comfortable., palliative care. His eyes

had black rings under them, he was so very thin, he had

a black film throughout his mouth. He had had only less

than a half cup of a chocolate nutrition drink in over 2

weeks. He had nothing else to eat or drink, not even water. The day

before he passed away my Aunt, Uncle,

and myself went to visit dad. His cheeks had more color than normal, his

eyes were bright and he was alert. He was in a recliner chair, covered up.

His arms were really

contorted at the elbows and the wrists. His eyes

spoke volumes and he kept leaning toward me as if

to say something. I sat on the floor next to his chair

rubbing his arms. I mentioned a few times that it seemed

he was trying to say something and that I would sure love

to hear his voice. He kept looking into my eyes, and

his eyebrows would go down as if to say something.

That night he walked to the nurses station, stood a

while, walked around the halls, went and used the

bathroom and laid down. The next morning, Friday

September 20 he was awake and alert and indicated

he didn't want to get up. Dad shut his eyes and he

was granted his decision...he won his battle.

I hope this answers some of your questions and if

there is more you would like to know I am happy to

answer anything else you want to know.

Sending you many hugs and prayers for you and

your dad. There is definitely power in prayer!!

Sandie

Des Moines, IA

[Guest guest]

Dearest Piper,

Thank you so much for sharing this with me. That is exactly what we are

going through and it definitely has been cruel. Mr. B's appetite has decreased

a

lot but he still eats three (somewhat) meals a day. His blood pressure has

been so low for the past five months that I truly don't know how he could

survive. That's one thing that I insist on doing....taking his blood pressure

every

two hours. I can tell how he feels just by looking at the results. And yes,

it is lower while he sits in his chair....yet...he refuses to be in bed

during the day and wants out of bed as early as 4:30 in the morning!

He hasn't been out of the house since he returned from the NH in January, and

before that the last time was in October of last year. The other day I asked

him what he wanted to do and he surprisingly said, " Go for a ride in the

convertible. " We all laughed along with him and then thought for one moment

that

he was serious, so we told him that if his BP went up a bit we would all go

for a ride. Then...he said, " In my dreams " .....and that was that. He won't

even try to go anywhere. He just sleeps in his chair, or bed when I insist, and

goes back and forth each day. He does ask for oxygen every now and then but

that's not even on a regular basis.

It's exhausting to gather all your emotions when you think the time is here

and then you feel silly/guilty/almost stupid when he's on the comeback. Yet,

it's really not a comeback, it's a " pause " before the next stage, and the next,

until you don't know if YOU are coming or going. Now, I must confess, I am

afraid of how I will feel when the end does come. You said it perfectly, " That

is one of the cruelest things about this disease - we prepare for the end, and

it seems like it will never come, but one day it does, and you can't believe

it. " I'm so exhausted I don't know how I will get through it sometimes, but,

I'm sure I will.

It has helped so much to hear what you have had to say about your experience

and I thank you from the bottom of my heart and am so sorry that you had to

endure the pain of this insidious disease with your dear Dad. I know he is

proudly looking over you.

Much Love, Hugs, and wonderful Peace to you, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - might be PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided)

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan in NH for 5 days (Jan '06), hasn't been the same since

Daily BP usually 68/52

* * * * * * * * *

Hi, Stevie,

I am so sorry you are not feeling well. Thank goodness you found the

Caregiver. I know it is not much relief, but every bit helps when you are

having

to deal with what you are dealing with. My father had the blood pressure

problems, too, for the last months of his life. His blood pressure was

normal his

whole life, but he did develop the orthostatic blood pressure the last six

months of his life. When he was sitting up in a chair, his blood pressure

would be so low, I could not understand how he was still conscious. When he

would lie down, his blood pressure would come back up somewhat. If Hospice

is

taking Mr. B's blood pressure when he is sitting up, you might get them to

take it when he is in bed and see what happens. It is so hard to know about

the

end stages. I thought my dad was at the end stages a year ago, and he kept

on going. His decline was very, very slow until last September. He stopped

going out of the house at all then, but he leveled off a little for some

time.

In February he just quite eating - his appetite had slowly decreased, but

he was still eating decently. He just could not take in food or water all

of

a sudden, and then everything accelerated until he passed away on March 4. I

guess what I am trying to say is that the end can come on really quickly

when

you think it will never come. That is one of the cruelest things about this

disease - we prepare for the end, and it seems like it will never come, but

one day it does, and you can't believe it. I am thinking of you, and knowing

you are going through hell right now. Please feel better soon.

Love and hugs,

Piper

[Guest guest]

Stevie, you hit the nail on the head. That is exactly

what I am trying to say. One name has a different

" time frame " And I might add:

PDD slower/LBDfaster progression . But both are the

same. They are treated the same, have the same

symptoms and even the same sensitivities to

neuroleptics and medications. That is why it was a

controversay with doctors. They could not tell the

difference, except for they saw some LOs progressed

slower than others and found out it was those with PDD

in the study that had Parksinsons for several years

before the onset of Cognitive Impairment and that is

where they drew the difference. Jan

--- juperant@... wrote:

> Hello ,

>

> I agree with you about the meds and LBD and PDD. I

> think they should both be

> treated the same with respect to each other (mainly

> AVOID THEM...LOL). One

> name has a different " time frame " but both are the

> same " disease " as far as I

> can see (?).

__________________________________________________

[Guest guest]

Dearest Sandie,

I just read your previous message (Piper/Stevie) and I thank you for that

much needed hysterically-crying moment and for sharing your deepest feelings as

you were experiencing what I am fearfully anticipating. I felt it in my bones

when you said, " I felt like I had to hurry yet the hurry was over with. " I

know I will be at that point soon and I am thankful that I have your words, and

Piper's, and all who have shared their beautiful, personal experiences of

their LO's final passage to make the final journey with Mr. B a bit more

bearable.

Thank you Sandie for sending your strength.

Much Peace always for you, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - might be PDD now

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided)

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan in NH for 5 days (Jan '06), hasn't been the same since

Daily BP usually 68/52

Stevie

Wishing you well again and praying for continued

strength and energy.

Thinking of you tonight-

Sandie

Des Moines, IA

* * * * * *

Hello Stevie and Piper-

Piper wrote:

" That

is one of the cruelest things about this disease - we prepare for the end,

and

it seems like it will never come, but one day it does, and you can't believe

it. "

This is so very true. I had a few scares with my dad

wondering if we were experiencing the end. Then,

true as Piper wrote, I just couldn't believe when the end

was actually there. I was at a doctor's appointment. My

brother had tried calling my cell phone 2 times as did

the NH where dad had been for almost 4 days. I had

been talking with my doctor about my dad at exactly

the time when " it " happened. My dad had stopped eating

and drinking for a couple of weeks prior to this day. I

knew it was coming but when it did I forgot even how to

breath. I was in panic mode and couldn't remember how

to use a key for the truck. I was stuck outside my truck

then when I did make it in, I couldn't remember how to

get home. I had rang the NH back and the nurse asked

if I knew what happened...she said, " Oh Sandie, you

don't know yet do you?! " I responded then tried calling my

brother and my aunt and uncle. I tried a couple other

people as I felt I was in a dream. I couldn't get a hold

of anyone and was driving somewhere. I felt like I

had to hurry yet the hurry was over with. I did reach

my brother and he came to pick me up so we could

drive to the NH. He drove me and THAT was a good

thing. I guess he knew I needed someone to drive me.

My dad's journey went on for 7 years but at the moment

he won his battle it all seemed so short. Dad won his

battle, my mind knew that but my heart didn't realize it

for quite some time. Life was so different after dad

was gone. I still had 2 jobs, 3 kids, 3 cats and a dog

plus an unstable marriage but suddenly I had nothing

to do. I was floundering around in a life that didn't seem

to fit any more. I went from doctors appointments, care

plan meetings, meds and more meds., caregiving

and visits to nothing. It was done. Final!

So, my heart truly goes out to those who are nearing

the end of their journey and those who are beyond

the end. I send up prayers nightly for all caregivers

and their loved ones and special ones for those

who have went on.

Kia Kaha is Stay Strong in Maori-

Sandie

Des Moines, IA

....having a 'missing my dad' moment...

[Guest guest]

Thank you Jan for all you have researched and brought back from DC! All this

wonderful knowledge is vitally important and helpful when talking to Doctors,

Nurses, Hospice, Family and Friends about our LO's plight.

Much Peace to you and Jim, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - might have PDD now

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided)

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan in NH for 5 days (Jan '06), hasn't been the same since

Daily BP usually 68/52

* * * * * * * *

Stevie, you hit the nail on the head. That is exactly

what I am trying to say. One name has a different

" time frame " And I might add:

PDD slower/LBDfaster progression . But both are the

same. They are treated the same, have the same

symptoms and even the same sensitivities to

neuroleptics and medications. That is why it was a

controversay with doctors. They could not tell the

difference, except for they saw some LOs progressed

slower than others and found out it was those with PDD

in the study that had Parksinsons for several years

before the onset of Cognitive Impairment and that is

where they drew the difference. Jan

--- juperant@... wrote:

> Hello ,

>

> I agree with you about the meds and LBD and PDD. I

> think they should both be

> treated the same with respect to each other (mainly

> AVOID THEM...LOL). One

> name has a different " time frame " but both are the

> same " disease " as far as I

> can see (?).

[Guest guest]

Hi, Sandie,

I, too, thank you for sharing your thoughts about your dad. I know you are

really missing him now, and I am holding you in my heart. Thank you for

always being there.

Love and hugs,

Piper

[Guest guest]

Good morning Stevie-

You are so welcome. The blessing comes through words

like what you wrote. In thanks for sharing our stories, and

in knowing that some how, some where someone was

touched and possibly helped through their journey.

Many heartfelt thoughts, prayers, and blessings to you

and Mr. B. May he soon have his ride in the convertible

and may you find peace in know he will always be with

you in life. Only a thought away and always in your

heart.

Hugs and more hugs-

Sandie

Des Moines, IA

-- Re: Stevie

Dearest Sandie,

I just read your previous message (Piper/Stevie) and I thank you for that

much needed hysterically-crying moment and for sharing your deepest feelings

as

you were experiencing what I am fearfully anticipating. I felt it in my

bones

when you said, " I felt like I had to hurry yet the hurry was over with. " I

know I will be at that point soon and I am thankful that I have your words,

and

Piper's, and all who have shared their beautiful, personal experiences of

their LO's final passage to make the final journey with Mr. B a bit more

bearable.

Thank you Sandie for sending your strength.

Much Peace always for you, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - might be PDD now

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided)

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan in NH for 5 days (Jan '06), hasn't been the same since

Daily BP usually 68/52

Stevie

Wishing you well again and praying for continued

strength and energy.

Thinking of you tonight-

Sandie

Des Moines, IA

* * * * * *

Hello Stevie and Piper-

Piper wrote:

" That

is one of the cruelest things about this disease - we prepare for the end,

and

it seems like it will never come, but one day it does, and you can't believe

it. "

This is so very true. I had a few scares with my dad

wondering if we were experiencing the end. Then,

true as Piper wrote, I just couldn't believe when the end

was actually there. I was at a doctor's appointment. My

brother had tried calling my cell phone 2 times as did

the NH where dad had been for almost 4 days. I had

been talking with my doctor about my dad at exactly

the time when " it " happened. My dad had stopped eating

and drinking for a couple of weeks prior to this day. I

knew it was coming but when it did I forgot even how to

breath. I was in panic mode and couldn't remember how

to use a key for the truck. I was stuck outside my truck

then when I did make it in, I couldn't remember how to

get home. I had rang the NH back and the nurse asked

if I knew what happened...she said, " Oh Sandie, you

don't know yet do you?! " I responded then tried calling my

brother and my aunt and uncle. I tried a couple other

people as I felt I was in a dream. I couldn't get a hold

of anyone and was driving somewhere. I felt like I

had to hurry yet the hurry was over with. I did reach

my brother and he came to pick me up so we could

drive to the NH. He drove me and THAT was a good

thing. I guess he knew I needed someone to drive me.

My dad's journey went on for 7 years but at the moment

he won his battle it all seemed so short. Dad won his

battle, my mind knew that but my heart didn't realize it

for quite some time. Life was so different after dad

was gone. I still had 2 jobs, 3 kids, 3 cats and a dog

plus an unstable marriage but suddenly I had nothing

to do. I was floundering around in a life that didn't seem

to fit any more. I went from doctors appointments, care

plan meetings, meds and more meds., caregiving

and visits to nothing. It was done. Final!

So, my heart truly goes out to those who are nearing

the end of their journey and those who are beyond

the end. I send up prayers nightly for all caregivers

and their loved ones and special ones for those

who have went on.

Kia Kaha is Stay Strong in Maori-

Sandie

Des Moines, IA

.....having a 'missing my dad' moment...