RE:

[Guest guest]

- get total relief at some point with the lowest necessary

dose.........

>

> I was told by my doctor that there is no such thing as total

relief. That if you have total relief,of you always seek that, that

is the point where you risk building tolerances more quickly, as you

will need to maintain that level of constant relief. My goal, through

my education and doctors help, is to better tolerate this pain and

live my life a bit more gently. It is the knowledge that I will never

fully eliminate the pain but I can reduce the impact of it. This pain

will never fully go away and it very likely will get worse as it has

so far. This is not theory it is reality.

[Guest guest]

Actually, , a more popular answer to your question would probably be...I'd

be in dreamland. I can barely stay awake as it is and if I took " extra " doses,

I probably wouldn't get out of bed. I would say that one who is in pain will

not react that way--unless, of course, one has achieved their level of pain

control and has decided to take it a few steps further. But, I still think that

they would fall asleep before they would get high. It's late and I'm babbling,

so it's off to bed. Take care.

Peggy

Owen wrote: ,

My doctor hasnt used the word high, but there is always the opportunity and

possibility of abuse of pain pills....if you are stabelized at 40mg doses 3

times a day, then there is always the possibility that you could get high if you

popped 60 right??

Hugs,

Peggy (mhksmom)

Today is the first day of the rest of my life........

---------------------------------

[Guest guest]

I definetly agree with you about how important truthfullness is and I

too demand(maybe to harsh of a word)that people be truthfull with me.

I'm so tired of the games that if people can't be up front with me or

they try at all to manipulate me I can't be around them. My sister &

I sometimes have a hard time communicating with each other if there's

a problem between us. Our communication skills when it comes to

confronting problems is retarded at best so we found that even though

we

live with each other that if we e-mail each other it usually helps

get us past the emotional part & then we can talk about stuff freely.

It's just so freeing that that we can talk(awkward as it is sometimes)

and it's so freeing knowing about my mother's BPD.

--

>

> Re: Carol

>

>

> It's been just the last couple of years that my

> sister and I started catching our nada in lies and we

> decided for one not to talk about our feelings about

> each other in front of our nada to give her that

> little bit of truth the fuel the lies and then we also

> decided that if our nada said anything about the other

> that we would verify it with each other before we

> reacted.

>

> My sister and I have done the same thing. My nada would always

call my

> sister and say I said this or she'd call me and say my sister said

this. She

> tried consciously for years to keep us apart. Now we don't play

that game.

> So many times what she said was all distorted. I refuse to keep

secrets for

> anyone anymore. My whole life has been one big secret and I won't

do it.

> jules

>

>

> __________________________________________________

>

[Guest guest]

Jules,

I live in Raleigh now. I grew up in Granite Falls,

near Hickory.

--- Stafford wrote:

> Just curious, what part of NC are you from? I'm

> from NC also. The

> Charlotte area.

>

> Jules

> Re: Chosing to vs. Having to

>

>

> Debbie,

> Are we related? This sounds exactly like my

> family.

> (Btw, I live in North Carolina.)

>

> You wrote:

> " Debbie, you know all of us girls are

> emotional,

> it is part of our charm. Can't you just let your

> mother have her little outbursts? They don't mean

> anything...I can remember Mama doing that same

> thing

> to us...as a matter of fact you should've seen it

> when

> Mama and Aunt Mabel would both get going! My

> word,

> there is Cousin Alma's husband...I hope I get to

> the

> potato salad before he does. Bye, doll! "

>

> That could have been said by my grandmother. She

> said

> that everyone in my nada's family has their little

> outbursts, and it's just because she's insecure

> and

> jealous. In her opinion, all my nada needs is a

> " Christian counselor " . My reponse was only if

> they

> perform exorcisms!!

>

> Hugs,

>

>

>

> --- sweepea1215@... wrote:

> > In a message dated 6/5/02 10:01:39 PM Eastern

> > Daylight Time, julie@...

> > writes:

> >

> >

> > > , I have a family birthday party that I have

> > > to attend this weekend...ok, I don't *have* to

> > attend (let's change this to

> > > owning responsibility for my reactions)...a

> party

> > than I am going to

> > > *chose*

> > > to attend because it is important to my

> husband

> >

> > ,

> >

> > *Having* to do things is a huge bummer, isn't

> it? I

> > hate it! I am at the

> > stage now were saying I *chose to* instead of I

> > *have to * doesn't make a

> > hill of beans difference!! I want to work

> through

> > this so that I feel like I

> > can actually chose somehting based on some

> emotion

> > other than guilt or

> > fear!!! My grandmother (Megatron's mother...aka

> > queen of all the

> > snooty-patooties east of the Mississsippi) has

> been

> > planning a family reunion

> > for the past year. It is the last weekend of

> June.

> > This may be my

> > break-through decision! I DON " T WANT TO

> GO!!!!!!!

> > The thought of the

> > ridiculous boundary violations that will take

> place

> > over a plate of

> > barbecue....AGGGHHH! (For full effect please

> say

> > the following lines out

> > loud in a sicky-sweet Daughters of the

> Confederacy

> > type of voice.) " So,

> > Deborah, we hear you have been trying to destroy

> > your mother's marriage. Do

> > the doctors think that may be a side effect of

> your

> > radiation? My friend's

> > niece had radiation and she was a total b**ch

> for

> > three whole years after,

> > too. Pity the doctor didn't warn us. Ohhh! Is

> > that Watergate Salad?....see

> > ya hon! " " Debbie, you know all of us

> girls

> > are emotional, it is part

> > of our charm. Can't you just let your mother

> have

> > her little outbursts?

> > They don't mean anything...I can remember Mama

> doing

> > that same thing to

> > us...as a matter of fact you should've seen it

> when

> > Mama and Aunt Mabel would

> > both get going! My word, there is Cousin Alma's

> > husband...I hope I get to

> > the potato salad before he does. Bye, doll! "

> > Absolutley unbelievable!!!!

> > Yet, a place in my heart feels like I HAVE TO

> go.

> > But, I am

> > not...NOTNOTNOTNOT! So, somebody please come

> here

> > and lock me in a closet

> > for the last weekend of June, so the FOG doesn't

> > trigger me to auto-pilot

> > myself straight to North Carolina.

> >

> > One baby step at a time, I guess.

> >

> > Hugs,

> >

> > Debbie

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I don't feel anyone has the right to pollute another's ears with music

they don't care for. So, when my son was a teenager, we had a little

discussion about music. I happened to be in a Country Western jag at

the time, and he liked the latest eardrum puncturing hits, naturally. I

explained that it was very important to respect other people, and

playing loud music was not showing respect to others. So, we both

agreed to play our music low enough so it couldn't be heard by anyone

who didn't care to hear it. End of problem. When my daughter hit the

music age about six years later, it was no problem, because she already

knew what was expected. She wasn't much into music anyhow.

Smiles!

Carol

Ayesha wrote:

> YES! Does he ever. He likes the real hard rock but now I have

> noticed his taste has softened some, thank God. It's one of the

> areas in which I can relate to him but it's like you say....some

> days I just don't want to hear loud music. Other days I like it too.

Stafford wrote:

> >Does yours listen to music all the time? Mine do.

> > You know how music can affect your mood. Some days I'll be

> bouncing off the

> > walls.

[Guest guest]

Don't be ashamed. I spent so many years ashamed of everything. I knew our

family was different, but I thought something must be wrong with me. These

are fleas. Things we learned from watching our primary caregiver, or nada.

It's hard for me to totally get rid of all my fleas, but it has really

helped me to know that I wasn't defective. And it really helps to know that

there are KOs out there who have experienced the same things I have and who

have the same feelings. I always thought I was the only one. I was really

good at keeping the " family secrets " . Now I have days when I revert back to

old patterns, but I feel so much stronger. I'm not afraid everytime I turn

around. I used to feel so afraid so much of the time. Because of my family

background I never learned to trust anyone, especially myself. The whole

world was bad. Then I went through a period where I had my good days and my

bad days. Now I have my good minutes and bad minutes.

Yes, I just realized today that I do too at times and I have never

realized it until today. Time to stop it! I am ashamed I do it. I

don't do it with everyone, though, mostly with the people that I am

really close with. Allright, I better get working on this one!

>

> To get off the list, send a blank message to

> ModOasis-unsubscribe@y... Send questions & amp; concerns to

> ModOasis-owner@y... & quot;Stop Walking on Eggshells, & quot; a

> primer for non-BPs can be ordered via 1-888-35-SHELL (888-357-

4355). For the

> table of contents, see http://www.BPDCentral.com

>

>

>

>

[Guest guest]

I think you are right...I might try that one too.

Ayesha

> > >Does yours listen to music all the time? Mine do.

> > > You know how music can affect your mood. Some days I'll be

> > bouncing off the

> > > walls.

[Guest guest]

Carol,

I (or whoever this *I* is) agrees with you, only I put it into different

words.

I only have words available that exist also for others. I could also write

this whole conversation in German, Italian or French.... but then you would

not understand me (as if this was necessary, lol........!)

Whatever YOU perceive when I am using the word *I* is up to you, I have

absoltely no control over it. The same goes for any other word and

composition of words into a sentence. Lots of times there are no words for

what I want to describe....... and yet, I am describing an innter state or

vibration..... ! Maybe shutting up would be best and just enjoy the

experience.

Blessings (whatever this means to you)

> wrote:

>

> >>In my reflections I assume that since I have chosen to be in this

> kind of thought creation that we commonly call human beings [sNIP]<<

>

> Can you really know that that's true? Could it be that this " thought

> creation " was chosen for you...that " you " have nothing to do with it?

>

> I could go further and ask, " You're a you...can you absolutely know that

> that's true? "

>

> Having been a spirituality dilletante from my early 30's up until I let

The

> Work have me, I have often come across this concept that we " choose our

> reality, " and it has always made me cringe. This simply is not my

> experience. The longer I live the more I am convinced that I don't choose

> anything in my physical world. The only thing I " choose, " if it can even

be

> said that I choose anything, is the way I think about it, engage with it,

> attach to it.

>

> >>Has anyone else of you had this encounter with the vast sea of

> NOTHING, standing at the cradle of new birth, Venus rising from the

> foam of the Sea? I can change my world...... what a prospect.<<

>

> If it makes you happy, I'm happy that this is your experience. As for

me...I

> can't change my world. I can't even change my thoughts about the world.

I

> can change my attachment to the thoughts arising about it. The world is

what

> is. My perception of the world might change, but can I know that the

world

> changes according to my will? I'm not God. Experiencing a shift in my

> attachment to thought is about all " I " ever do.

>

> We do a few exercises, have a few revelations, and then we say " I " did it,

> " I " changed my world. Can you really know if that's true? Speaking for

> myself, I can't know this. It feels arrogant for me to say that.

Everything

> in my life that I ever thought I was in charge of has proven to be

completely

> out of my control. I can't know anything except what's true in the

moment,

> for me.

>

> And this is all a lie too!

>

> Love, Carol

>

>

[Guest guest]

It is true, so many of the stories are so similar. I usually use the

term " mirrored image " of my dad. Yet, each similar story seems so

different in a way. What works for one person may or may not work for

another. Plus, with the progression of the disease, what has been

working may need to be changed. It is a strange and unique disease.

Best wishes. Stay strong and keep posting.

Sandie

Des Moines, IA - where we had no snow for Christmas :-(

[Guest guest]

Martha

My words of wisdom...hmmmm....Cherish each moment as if it were your

lost moment together.

I would suggest treating your mom with the utmost respect and dignity,

as if she wasn't struggling with LBD. My dad was so aware of what was

going on, just couldn't communicate. His agression seemed to be more of

anger. I remember about 2 yrs ago, while in a NH, he stopped and looked

at the mirror in his room. We stopped together, he grabbed the vanity

with both hands as if to pull it off the wall yelling " WHY ME, WHY ME? "

I told him I didn't know why him but we were in this together, 'til the

end. That had become my motto from the beginning...'til the end. My

advice also is to treat every situation as if it is as new to you as it

is to your mom. What I mean by this is, LBD has characteristics of

Alzheimers so along with that comes memory loss, hallucinations, and

delusions. I never down played my dads hallucinations or told him " it

wasn't really happening " . All of what happened to him seemed very real,

it would be as if someone tried to convince me that I am not typing a

letter to you right now and that you aren't reading it. Feels very real

to me. Also, the disease changes and fluctuates so often that it can be

difficult to know if it is progression or just a fluctuation. When my

dad seemed to have bad days, I would usually give my dad a good 2 weeks,

and if he didn't change back, I could feel comfortable in knowing it was

progression. Otherwise, he could and would change in a minute, an hour,

or even a day. Please do take all information on LBD to everyone you

come in contact with. I took everything with me to every dr. appt.,

hospital admittion and then some. Even in the obituary I had printed

that cause of death was Lewy Body Dimentia...to raise awareness. In

fact, there is a new member in this group because of my dads obituary.

I am proud to have directed her here.

Hopefully this isn't too long. Also, I hope I have helped answer some

of your questions. Please keep asking and/or tell more of your story.

It truly has helped me to meet so many people and to know all are so

caring and helpful.

Sending many prayers up in your name.

Sandie

Des Moines, IA

In case I didn't mention recently, my dad was diagnosed over 5 yrs ago,

at the age of about 60, had experienced symptoms a good 2-4 yrs before

that, and died Sept. 20, 2002 at age 65.

[Guest guest]

Sandie -

You are so sweet to share your experiences. Thanks for taking the time,

it is truly uplifting (under the circumstances).

My mom has only been in the Alzheimer's unit of an assisted living

facility since before Thanksgiving. It is the best facility in our city.

One thing that disturbs me is that mom wonders into other residences' rooms.

Tonight, when I checked on her around 7:30, she was asleep in another room.

She also was wearing the sweater of this person. It was very disturbing.

They let everyone just roam around and have independence. I think that is

great - to have your independence - but mom needs to be monitored. She has

been falling and I have asked them to keep a close watch on her. I got a

phone call last night at 10:00 p.m. that mom had fallen out of bed.

Is this normal? Do most facilities let everyone just roam and not check

on them? I thought mom would have dinner and then around 8:00 or so the

nurses would give her the meds and then they would help her put on her

pajamas - then place her in bed. It is disturbing to find her in someone

(not to mention a man's) room.

What do you think? Again, is this common in a facility? I am dealing

with the emotion of this horrible disease, do I have to keep close tabs on

mom in the facility also? Just wanted your thoughts.

Thanks so much! You are great.

Martha

[Guest guest]

Martha,

My Mom died Oct 17, '02. She was in a nh for the last year of her life.

And the main answer to " do I have to keep tabs on my Mom in the

facility, " and the answer is Yes!!

And most of the time you have to trust your judgement more than anyone

else. You know her better. They have a lot of people to take care of

and until you are sure they are doing their job, you must know what is

going on. And if she is in assisted living, you may not have as

professional help as you would like. Maybe you do, but until you know

what is happen when you are not there, and you will know sooner or

later, you must keep track. You will learn who will and who may not do

what needs to be done.

I know this is hard, and most is done as best you {or I} can do it. Not

everyone has the investment you have for your mom. And some may not

know what they are doing. The nh I had Mom at, unfortunately was not a

good one so I may be being overly cautious. And they are not all the

same.

Donna

[Guest guest]

Donna -

I cannot tell you how much I appreciate your sharing and helping me

understand what needs to be done. This is tremendous help. There is so much

to think about and it just seems like everyday there is a new set of

circumstances.

Thank you also for continuing to help even though your mom passed on.

Your support and insight is a God send.

Martha

[Guest guest]

and the group-

You mentioned that your mom has started the " not " talking stage. I

remember my dad was mostly quiet for the last year of his life. When he

did talk it was more of answering questions, even up to 2 yrs before he

passed away. It just became a way of life for he and I. I learned how

to " read " my dad and how to rely on intuition. I hope your dad finds a

way to cope and I pray for the guidance to make it through this journey.

Keep us posted.

Take Care- and take special care of your hubby!

Sandie

Des Moines, IA

[Guest guest]

Thank you Sandie for your comments. I am really glad you are staying

with this group even after your father passed away. I am sure I and

others will be asking more questions as time goes on trying to

understand this horrible disease. Your experience will be invaluable

to all of us. I feel lucky that my mother and I have always had a

psychic connection so I hope I will also be able to read what she

needs as you did with your father. When she was diagnosed in April of

this year I was told because of her history and when it probably began

we would only have 2 years. We will see.

Sometimes I wish for her sake she would pass real fast with a sudden

event rather than the slow agonizing process of this disease. But it

is out of my hands isn't it.

(in 60 degree weather in California)

> and the group-

> You mentioned that your mom has started the " not " talking stage. I

> remember my dad was mostly quiet for the last year of his life. When he

> did talk it was more of answering questions, even up to 2 yrs before he

> passed away. It just became a way of life for he and I. I learned how

> to " read " my dad and how to rely on intuition. I hope your dad finds a

> way to cope and I pray for the guidance to make it through this journey.

> Keep us posted.

> Take Care- and take special care of your hubby!

> Sandie

> Des Moines, IA

[Guest guest]

You are so right...it is out of our hands. Many times it seemed that my

dad was at the end. He should have passed about 2 1/2 yrs prior to when

he did. He had a horrible case of asperation pneumonia. He was

weighing 130 lbs, usually he weighed atleast 200 lbs. He couldn't

swallow, he was extremely sickly. At that time I had to make the

decision at to whether he should have a feeding tube or not. Long

story, short version, a doctor messed up.

So my dad ended up with a feeding tube for 3 months and hated it to say

the least. He never said to take it out, just would detach the tube

from his stomach and spin the nutrition around with it going everywhere.

Of course this was while looking us in the eyes. In April when the tube

was taken out he had been eating a while and gained back his weight and

then some. He seemed healthier than he was in a long time. Again, the

disease progressed. Many more times I thought it was his time...but my

plan wan't " the " plan. Again, when he seemed fairly healthy, had used a

restroom, was up walking around and setting in recliners he went to bed.

The next morning, a Friday, he was awake and indicating he didn't want

to get up. The nurse that was with him (which happens to be a cousin to

a cousin) said dad was alert, awake and coherent. He turned his head

toward her, shut her eyes and went to sleep, forever.

As for now I will sign off and set in this memory for a while. I am so

proud of my dad for making his final decision in life...he chose to stop

eating and stuck with it.

Thanks for your kind words. Thank you for allowing me to share my

memories, and for genuinely caring. Anything I can do to help, please

ask. No question is too big or too small!

Sending hugs to you.

Sandie

Des Moines, IA

[Guest guest]

I looked up the meds. you mentioned and found nothing on Zispin and

Iscover.

ARICEPT

Uses: Treatment of mild to moderate dementia of the Alzheimer's type.

OUTCOMES/EVALUATE

Improved cognitive functioning with Alzheimer's.

If you can, find out other names for the other meds. I would like to

know what they are and their effects on dementia.

Trying to help. Sending prayers your way.

Sandie

[Guest guest]

Sandie -

Thank you for sharing with . It also helped me to get (maybe) a

glimpse of what may come. We have already decided not to have a feeding tube

and let God take control.

I know it is not easy to recall those memories so vividly, but I also

know the memories will be with you for a long time. (My dad died of open

heart surgery about 9 years ago and the memories of that ordeal are still

with me).

But, again, thanks for your strength and outreach to those who need

assurance or just a word of thought.

God bless,

Martha

Greenville, SC

[Guest guest]

I looked up the other meds you mentioned:

CLOPIDOGREL

Antiplatelet drug

Uses: Reduction of micardial infarction (MI), stroke, and vascular

death in clients with atherosclerosis documented by recent stroke, MI,

or established peripheral aterial disease.

Special concerns: Use with caution in those at risk of increased

bleeding from trauma, surgery, or other pathological conditions.

MIRTAZAPINE (REMERON)

Antidepressant, tetracyclic

Uses: Treatment of depression.

Special Concerns: Use with cauion in those with impaired renal or

hepatic disease, in geriatric clients

Side Effects: the list is HUGE

My dad had horrendous side effects while on Remeron...in fact I had him

taken off it as soon as I realized he was on it. The NH didn't always

tell me when new meds were ordered, which they were ALWAYS supposed to.

I would be careful with the Remeron. There are other antidepressants

maybe more suitable.

Thank you for sharing your story. Keep up the posts and telling us how

your dad is doing.

Hugs-

Sandie

Des Moines, IA

[Guest guest]

I am surprised and concerned that your mom is doing so well on Haldol.

It is one of the older anti-psychotics, like Ativan, that can have

irreversible effects on LBD patients. Does your mom experience tardive

dyskinesia? The involuntary movements of the mouth? Please keep us

posted. My opinion is prolonged use of this med may be harmful. Just

my opinion.

Thanks! Keeping you close in prayer.

Sandie

Des Moines, IA

[Guest guest]

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

From: sanclown@...

I am surprised and concerned that your mom is doing so well on Haldol.

It is one of the older anti-psychotics, like Ativan, that can have

irreversible effects on LBD patients. Does your mom experience tardive

dyskinesia? The involuntary movements of the mouth? Please keep us

posted. My opinion is prolonged use of this med may be harmful. Just

my opinion.

----------------------------------------------------------------------------

----

I'd like to warn too that she should be careful with

neuroleptics(Haldol etc). Elsie developed tardive dyskinesia from a

different neuroleptic medication and her tongue and mouth movements are very

bad at times. Nowadays tardive dyskinesia can be controlled by another drug

(Nitoman) which in its turn may lead to Parkinson's symptoms after prolonged

use.

Ernest

[Guest guest]

My dad had taken Remeron. In the beginning it appeared to help, or

atleast something was. Then, as time progressed, it appeared to work

against him. This disease is so strange, what works for one, may or may

not work for another. Also, what works for a while, could change and do

damage.

In your post, you asked if both hospitals and nursing homes do this?

Are you asking if when our loved ones are in either, do we need to keep

a log? I always did. In fact, my files have files, if that tells you

anything. I was still writing notes up until a week ago. Still had an

issue with a medicare reimbursement check and was STILL dealing with it.

I wrote down the days and names of when I talked to people. It truly

feels WONDERFUL finishing up on everything. My dad passed away Sept. 20

last year, so having this drag out so long was a bit unnerving. Now, I

feel that a weight has been lifted and I can completely grieve.

Keep in mind, if you are POA for your dad, you have the right to ask for

medications records. In Des Moines, they are called MARS reports. They

are updated every month, with the exception of changes made within a

month. Those changes are added to the report, written in, then typed in

for the next months report. On it, you will find all medications,

dosages, and initials of who gave the med. It is logged daily. Even

shows Extra Strength Tylenol, metamucil, anything given to a patient.

And it is " State Required " . Even with this, I still kept my own

information and files, to match them up if needed. I have been told I

am very organized...some may think somewhat anal. I do know though,

when questions arised, which happened often, I was the FIRST to point

out when a med had been started and/or stopped. Makes for an

interesting conversation when dealing with the medical field and all of

their so called " expertise " .

Hope some of this helps. Continue to ask questions, vent, and tell us

your story. We are all here for you, through your journey.

Hugs and prayers!!

Sandie

Des Moines, IA

[Guest guest]

Thank you for recognizing my dads strength in his last days and hours.

My interpretation of his last days were as if he were making the

statement, " Look at me, I have regained my strength and all respect I

deserve...all faculties about me are working, so forever I will lay and

rest. " The courage and strength he showed both my brother and I, in

refusing all food and liquids is beyond any explanation of words...and

beyond honor. He made a powerful statement and I am proud to have " his "

ending as " my " ending. Definately hand in there, stay strong, love your

loved ones, and cherish each and every moment.

Sandie

[Guest guest]

My prayers of strength and comfort are with you.

Hugs!!

Sandie

[Guest guest]

How is your dad adapting to his new surroundings? Did his wife get all

the " things " in place for your dads room? You have been in my thoughts

so it is wonderful seeing a post from you. Still praying for the

knowledge, strength and courage it takes to live with LBD.

Stay warm!

Sandie