hello

[Guest guest]

Wow, Jannis, you are simply amazing the way you handle your mother. I admire

you the way you care for her. (((((hug))))

Gladys Stefany wrote: (((HUGS)))) Jannis My heart

and prayers go out to you.

Gladys

-- Re: Hello

I understand frustration with LO's. Just remember, though, that they have

no control and the disease is the one controlling when things happen.

This has been a really hard week for our family. Dad (primary caregiver,

age 84) got up during the evening to check on something and he fell. When

he fell, my mother came to a little, decided to get out of her bed and help

him. She fell. Dad crawled to the phone and called 911, and then lost

consciousness. EMSA came and took them both to the hospital, didn't call

any of us, and we didn't find out until almost 8 hours later that they were

in hospital. They kept them overnight for observation, and I had to miss

three more days of work last week in addition to the 5 that I missed the end

of the week before and the first of last week. My sister and I are both

jeopardizing our jobs trying to take care of things.

My dad refuses to accept even the IDEA of an NH. He is supported in that

feeling by my two brothers, neither of whom are accepting any responsibility

for Mom's care. My sister and I are worn to a frazzle.

Mom is quickly going downhill. I don't know the progression of the

disease, but it's my feeling that she's probably in the final stages. She

eats no more than two or three spoonfuls of food per day, and often spits

that out. She drinks less than a cup of water a day. She either sleeps or

pulls the covers over her head and doesn't talk to anyone for probably 23

hours and 55 minutes of each day.

As a family, we're opposed to feeding tubes or artificial hydration to

prolong her life. She is in a living hell right now, having hallucinations

and seeing things. Tonight she looked straight at me, and said, " Are you

satan? " She knows my name, but she calls me by my entire name, and has no

memory or connection that we are mother and daughter. She refuses to take

anything from my hands, and my father is the only one who can give her the

meds or even a drink of water.

She used the portable commode and then kept checking to make sure my

father flushed it. I asked her what made her think we wouldn't flush it..

what did she think we were going to do with it. Her response was, " Feed it

back to me. "

Last Saturday, she grabbed my sister's hand, and asked her if she was

saved. My sister said, " Of course, Mom. You were there at my baptism. "

That wasn't sufficient...my sister had to repeat a prayer for her salvation,

and ask forgiveness for all acts of adultery and fornication! I was

standing in the kitchen laughing my head off...when she came into the

kitchen, she said, " Well, at least it was short...if it'd been YOU, you'd

still be asking forgiveness... "

At times, I feel guilty for laughing at some of the things that go on, but

then I realized that my laughter was a cover for the pain. It hurts. I

know that Mom's time is limited, and I still count each moment as precious.

Jannis

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Thank you for your warm welcome. O copied and pasted a diagram that assists me

to keep track of her meds: Morning

Evening

1. Glucophage 500 mg

Glucophage 500 mg

2. Metoprolol 100mg

Metoprolol 100mg

3. Namenda 10mg

Namenda 10mg

4. Colace 100mg

Colace 100mg

5. Lantus (25 units)

Lipitor 20mg

6. Amiodarone 200mg

Seroquel 50 mg

7. Nexium 40 mg

Coumdian 2.5mg

8. Reglan 10mg

Cymbalta 60mg

9. Multi-Vitamin

10. Arricept 10mg

**Regular Insulin (PRN) Refer to Sliding Scale **

**Ultram 50 mg as Needed**

gaat wrote: HI Holly and welcome to the group. What

meds is your grandmother taking?

Courage

Hello

My name is Holly, my grandmother was diagnosid with LBD last week.

Before thaat I had never heard of it. She's a tough cookie....and she

wearing both my mother and I out. Last night was rough...she kept

haloring out our names every 15 minutes...this started at 10pm and went

on till 4:30 am. At times she would get stuck in the bed rails trying

to wander out at night, she instead in taking a shower at 0100 in the

morning. I work 12 hour shifts and get up to work at 5 am. At times I

wanted to yell at her...but I didn't.

Sometimes she's ok ...mentally alert and can converse well with us.

Then there are nightd that she is soooo stuborn, lost in her time ( by

that I mean she'll ask me if I fed the pigs? ...we have no pigs) then

there are days that she takes of her diapers and runs around the house

naked....

My mother sometimes thinks that she makes things up or trying to fool

us...

I am confused, frusterated and stressed.....

[Guest guest]

It's healthy to laugh! Crying gives you wrinkles! It is amusing to see what

strange trails the brain takes. Connecting the dots is such a challenge. Once

you realized that the current episode is not life-threatening, you gain your

perspective, and laugh if off, for a while.

it is kind of like dodging a bullet, and the relief is a smile.

We enjoy stories here, and we can laugh with you!

Carol

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Thank you Gladys...Its been woderful finding such a great support group. Thank

you Honestly I've learned so much more from this group then our PMD

Gladys Stefany wrote: Oh, Holly..... You've come to

there right place. Rest assured that your

grandma is not doing these things on purpose and is not trying to fool you.

I know you will find much support and knowledge here. My daughter helps me

care for my mother and I hope she'll come out and introduce herself to you.

Gladys

-- Hello

My name is Holly, my grandmother was diagnosid with LBD last week.

Before thaat I had never heard of it. She's a tough cookie....and she

wearing both my mother and I out. Last night was rough...she kept

haloring out our names every 15 minutes...this started at 10pm and went

on till 4:30 am. At times she would get stuck in the bed rails trying

to wander out at night, she instead in taking a shower at 0100 in the

morning. I work 12 hour shifts and get up to work at 5 am. At times I

wanted to yell at her...but I didn't.

Sometimes she's ok ...mentally alert and can converse well with us.

Then there are nightd that she is soooo stuborn, lost in her time ( by

that I mean she'll ask me if I fed the pigs? ...we have no pigs) then

there are days that she takes of her diapers and runs around the house

naked....

My mother sometimes thinks that she makes things up or trying to fool

us...

I am confused, frusterated and stressed.....

Welcome to LBDcaregivers.

[Guest guest]

Thank you for the welcome...in the last 3 hours that I've been reading the

groups situation, I no longer feel alone, I relate to many situations that

people have gone through because we gone through as well, I have pore patients

and understanding of my grandmother, and I now feel guilty that I was soooo

upset at her. I've learned alot and the input is very valuable. I've already

made changes after some suggestions from the group. And I enjoy the " Pity

Party "

adhd5464 wrote: Welcome to Lewyville!

We are a wonderful place to vent, as well as have your questions

answered.

Probably all of us have had the night you had last night. We

understand, and know how much you might have loved to have yelled,

but didn't. I think that is where much of the caregiver builds their

stress levels.

Find out what is working for some in terms of keeping the LO in

nights and days. there will be a plethora of answers, I am sure.

I am mostly on the question side of this disease, but can give you

empathy all day long.

hang in, and vent often!

Carol

If you throw yourself a pity party, most of us will show up! We love

to party!

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

[Guest guest]

Thank you Ruthie, its nice to know we're not alone

ru_ellen wrote: Hello Holly,

My name is Ruthie. (I'm Gladys' daughter) I also help my mother take

care of my Grandmother.

I can completely understand you wanting to yell. I was feeling that

way myself today. I couldn't even figure out why she was mad but I

was trying to help and she just started getting incredibly mad at me

and throwing (for a person who does not know she has LBD or the

symptoms would view as) a full blown temper tantrum.

One night while I was here I did not sleep a bit because she was

convinced the house was on fire and I had to keep her from calling

the fire department.

If you ever need someone to talk to who understands I am here and I

know the wonderful people on this list are as well. It is good to get

it out and also to know that you're not a lone.

Ruthie

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

[Guest guest]

Dear Holly,

Welcome from me, too. You've gotten lots of good advice already, and I'd just

like to ask several questions. I might have missed your first post, so if you

already answered these, please forgive the repetition. When was your grandma

diagnosed? How long has she been on this mix of meds? What other health problems

does she have and what other meds does she take? Did her MD consult a

pharmacologist to be sure all her meds work together?

I learned later than I wish that older people with LBD are generally VERY

sensitive to meds. And your grandma is on a lot of strong ones. Dr. Boeve's

articles on the proper meds for people with LBD helped me educate my mom's

doctors. Many MDs don't understand LBD. For example, my mom's first doc gave her

meds suitable for Alzheimer's but harmful in LBD. Also, mom couldn't tolerate

Namenda, even at the lowest doses. She had horrible hallucinations and

delusions, screamed around the clock and couldn't be controlled. The doc's idea

was to raise the dose of Seroquel, which made the situation worse, or to give

her sleeping pills - ditto. We finally took mom off everything and one med at a

time followed the golden rule of " start low (dosage) and go slow " (increasing

the amount and the kind). For us, limiting the number of meds - and using only

the meds the LBD experts (like Dr. Boeve) recommend - has helped the most. (By

the way, Namenda works a bit like a stimulant, and if

your grandma must be on it, you might ask about changing the times it's given.

The best things I ever did for my mom were: * find a doctor who knows about

LBD or, failing that, one willing to learn; * ask a pharmacologist (they are

the ones who REALLY know drugs, what should be given at what hour and in what

combination) for a consult about her condition and her meds; * call the MD

whenever her mental status/behavior changed rapidly (can be a sign of

over-medication, infection or other physical problem); * read as much as I

could by LBD experts; * get a part-time caregiver so I could have a break and

stay sane (even a few hours a week helped); and * come here for support and

comfort.

However it seems now, you will do your very best for your grandmother. Your

love for her - and for your mom - shines through your messages . . . and that

love will help you find your way on the journey you've started with your

grandma. Please keep us posted.

Holly Castaneda wrote:

Thank you Donna, My grandmother is on the

Namenda 10 mg twice a day once in the a.m. and the second at bedtime

Seroquel 50mg at bed time

and Arricept 10mg at bedtime.

Someone in the group hust made me aware about Arricept waking up the brain, so

1st thing tomorrow morning I plan to change that to the a.m.

I am will to try anything to try to help get my grandmother to sleep at bedtime.

I would be happy with 4 straight hours of sleep)

I am going to suggest to my mother that we take turns with gramma since it does

take a toll on the both of us.

And I'm going to look for the Melatonin tonight.

Thank you for the links, those were very informative. I've printed everything

out from there website.

The " Pity Party " is actually been very theraputical to me and my mother.

Everything The group shares with me I share with her...and I can see changes

with her srtress and frusterations.

Holly

wrote:

Holly - I agree we Donna - your grandmother should be checked for a

UTI... Welcome to the board - glad you found us! Let us know what

meds your grandmother is on. The one document that should be referred

to like a 'Lewy-bible' Dr. Bradley Boeve's paper - read here:

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php

Other good reads are:

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://www.lewybodydementia.org/AR0504BFB.php

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the

most detailed, accurate information I've ever read about LBD. I think

it should be sent to all new caregivers AND doctors who aren't clear.

Thoughts everyone? " Keli says, " Definately yes!!! This is very

informative yet not overwhelming. It can easily be shared with

others. I intend to have my husband and children read it, and

hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/DS/00795.html

LBD Brochure

(to print use legal size paper)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

Live Chat Event with Dr. Gomperts, MD

Dr. Gomperts answered your questions on this Q & A session with Dr.

Gomperts, MD

http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

from Risperidone; Mom fell into the 50% category of those who could

not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

> Holly,

>

> Welcome,

>

> You may not have heard of LBD before, but it sure sounds like you

are living it. My Mom was up every other night for 3 years. At

times it seemed to me she knew, but eventually I knew she wasn't

faking.

>

> If you go to the bottom of this email and find " Links " and " Lists "

you will find out lots of information about LBD that we have

collected. Many times Mom was given Meds that just didn't work. The

MDs are just starting to diagnosis it, much less understand the

Meds. My Mom was one who just couldn't do meds as they made her

worse, not better. At one point I was cutting an anti-anxiety pill

in quarters and giving her quarter of a pill all day. It worked

fine. Other than that I was fighting with MDs all the time to take

her off drugs.

>

> Check out what meds she is on and how much, and we can help you

know which might be a problem. Most MDs use to much and to fast.

And it makes things worse.

>

> Also, when Mom got upset, the MD that finally worked with me,

always said, " Bring her in and we will check for UTI.. (Urinary.

Track. Infection) And she always had one. And I would forget the

next time. But we would do it all over again. I just always tried

to remember, " Mom is scared, what can I do to help her fears. " The

more fears I calmed, the easier time I had. (Not that I could always

do that either.)

>

> Keep night lights on for her at night. Keep glaring glass covered,

(it makes for " lots of people " Mirrors, windows and pictures.

>

> So you will learn to live with Lewy. And come here for that Pity

Party that Carol was talking about. Sometimes you just have to

spout. You and your Mom will hopefully find a way to trade nights if

and when you need, so one of you isn't up all the time.. There is an

over the counter med called Melatonin that I could give Mom with no

bad effects. And even if she didn't sleep, she stayed calm and in

bed. You will learn to do whatever works.

>

> Glad you are here.

>

> Hugs,

>

> Donna R

>

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years

and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other than mine.

>

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

>

>

>

>

[Guest guest]

Dear Jannis, Thank you for sharing this. As the daugther and CG of two parents

with dementia (dad died 2 years ago), I " get " that every moment is precious -

and that if we don't laugh, we will totally fall apart. There is surely no

" good " disease, but LBD is among the cruelest I've encountered. You - like all

the folks here on this difficult journey with their loved ones - are a real hero

for your patience, persistence and loving attention to parents. My dad, too,

refused the idea of a NH - and my only sib agreed - and also refused to provide

any sort of assistance or support. When dad, whose stroke left him paralyzed on

one side, broke mom's back pulling her up from the bed, I had to step in. They

hated every minute, but I could not be a 24-hour caregiver, and there were just

too many opportunities for them to hurt themselves and each other.

You are being a wonderful daughter, and have my admiration. Please keep us

posted. Peace, Lin

Holly Castaneda wrote:

Wow, Jannis, you are simply amazing the way you handle your mother. I admire

you the way you care for her. (((((hug))))

Gladys Stefany wrote: (((HUGS)))) Jannis My heart and prayers go out to you.

Gladys

-- Re: Hello

I understand frustration with LO's. Just remember, though, that they have

no control and the disease is the one controlling when things happen.

This has been a really hard week for our family. Dad (primary caregiver,

age 84) got up during the evening to check on something and he fell. When

he fell, my mother came to a little, decided to get out of her bed and help

him. She fell. Dad crawled to the phone and called 911, and then lost

consciousness. EMSA came and took them both to the hospital, didn't call

any of us, and we didn't find out until almost 8 hours later that they were

in hospital. They kept them overnight for observation, and I had to miss

three more days of work last week in addition to the 5 that I missed the end

of the week before and the first of last week. My sister and I are both

jeopardizing our jobs trying to take care of things.

My dad refuses to accept even the IDEA of an NH. He is supported in that

feeling by my two brothers, neither of whom are accepting any responsibility

for Mom's care. My sister and I are worn to a frazzle.

Mom is quickly going downhill. I don't know the progression of the

disease, but it's my feeling that she's probably in the final stages. She

eats no more than two or three spoonfuls of food per day, and often spits

that out. She drinks less than a cup of water a day. She either sleeps or

pulls the covers over her head and doesn't talk to anyone for probably 23

hours and 55 minutes of each day.

As a family, we're opposed to feeding tubes or artificial hydration to

prolong her life. She is in a living hell right now, having hallucinations

and seeing things. Tonight she looked straight at me, and said, " Are you

satan? " She knows my name, but she calls me by my entire name, and has no

memory or connection that we are mother and daughter. She refuses to take

anything from my hands, and my father is the only one who can give her the

meds or even a drink of water.

She used the portable commode and then kept checking to make sure my

father flushed it. I asked her what made her think we wouldn't flush it..

what did she think we were going to do with it. Her response was, " Feed it

back to me. "

Last Saturday, she grabbed my sister's hand, and asked her if she was

saved. My sister said, " Of course, Mom. You were there at my baptism. "

That wasn't sufficient...my sister had to repeat a prayer for her salvation,

and ask forgiveness for all acts of adultery and fornication! I was

standing in the kitchen laughing my head off...when she came into the

kitchen, she said, " Well, at least it was short...if it'd been YOU, you'd

still be asking forgiveness... "

At times, I feel guilty for laughing at some of the things that go on, but

then I realized that my laughter was a cover for the pain. It hurts. I

know that Mom's time is limited, and I still count each moment as precious.

Jannis

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Holly: June again. I was looking at your list of

meds again, and see that she has Reglan, which is for

the stomach, right? If I remember correctly, they

gave me Reglan for nausea after surgery, and it was

very much of a stimulant for me; I couldn't sleep. I

also just Googled it and found side effects can be

nervousness, jitteriness, and insomnia. Might check

that one out, and if she has to have it, maybe give it

earlier in the day. Perhaps the Aricept is making her

nauseated; some have found the Excelon patch causes

fewer stomach problems--not the pill--that seems to be

worse. Looks like the Seroquel should be given at

night; I wasn't sure if your chart was showing that or

not.

You might try the Aricept, until she gets used to it,

5 mg tonight, then 5 mg in the morning, and another 5

early afternoon. Then, by the next day, possibly do

the 10 mg in the a.m. That way she won't be w/o it or

get doses too close together.

--- Holly Castaneda

wrote:

> Thank you for your warm welcome. O copied and

> pasted a diagram that assists me to keep track of

> her meds: Morning

> Evening

> 1. Glucophage 500 mg

>

> Glucophage 500 mg

> 2. Metoprolol 100mg

>

> Metoprolol 100mg

> 3. Namenda 10mg

>

> Namenda 10mg

> 4. Colace 100mg

>

> Colace 100mg

> 5. Lantus (25 units)

>

> Lipitor 20mg

> 6. Amiodarone 200mg

>

> Seroquel 50 mg

> 7. Nexium 40 mg

>

> Coumdian 2.5mg

> 8. Reglan 10mg

>

> Cymbalta 60mg

> 9. Multi-Vitamin

>

> 10. Arricept 10mg

>

> **Regular Insulin (PRN) Refer to Sliding Scale

> **

> **Ultram 50 mg as Needed**

>

>

>

> gaat wrote: HI Holly and

> welcome to the group. What meds is your grandmother

> taking?

> Courage

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with

> LBD last week.

> Before thaat I had never heard of it. She's a tough

> cookie....and she

> wearing both my mother and I out. Last night was

> rough...she kept

> haloring out our names every 15 minutes...this

> started at 10pm and went

> on till 4:30 am. At times she would get stuck in the

> bed rails trying

> to wander out at night, she instead in taking a

> shower at 0100 in the

> morning. I work 12 hour shifts and get up to work at

> 5 am. At times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can

> converse well with us.

> Then there are nightd that she is soooo stuborn,

> lost in her time ( by

> that I mean she'll ask me if I fed the pigs? ...we

> have no pigs) then

> there are days that she takes of her diapers and

> runs around the house

> naked....

>

> My mother sometimes thinks that she makes things up

> or trying to fool

> us...

>

> I am confused, frusterated and stressed.....

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

holly my friend, do not feel bad that you had a pity party i do not think there

is one of us in this group that can say we didnt have at least one pity party on

a regular basis. i know i did. i have bad health before we moved down to

pensacola to take care of daddy and i ignored my own health and wound up in the

hospital for 5 weeks with a double kidney infection, then an intestinal blockage

and then a staff in fection. so i was a sick puppy, i left the hospital against

medcial advice beucase daddy fell and he had broken his hip and he refused to go

to the hospital so i checked out, went home and came back to hosp by ambulance

with him, i wasnt even in the house for 30 minutes. but we have the same

doctor so my doc treated me as outpatient while daddy was i npatient i just

stayed in his room.

there is nothing wrong with having a pity party, your whole life has changed

and you have no control over it, so you and everyone else deserves a pity party,

you and your mom just need to learn how to pick and choose what is important to

argue wiht her about, calling fire dept yes we dont want that, but maybe next

time you can unplug phones for hte nite and she can't call, dad 2 months after

diagnsois didnt kjnow how to dial a phone or barely talk on it he would hold it

upside down and everything it was so sad, dad was a naval helicopter pilot very

very smart man and in the end he was just down to pointing with very very few

words,

when daddy was struglling for words i let him struggle as long as he didnt get

frustrated and tried to figure out what he said, sometime ugh meant hungry,

sometimes drink but ugh had to do with the mouth

also donnie gave me years ago wheni was in hte hosp a duck that quacked old

mcdonald, london bridge and brother john, when you put your hands in his beak he

quacked it, whenever daddy was having a bad day we would bring that out and he

would start giggling and the more his lbd progressed the more infantile and

cuter his laugh was, it was neat. also we started singing to each other You are

my sunshine whenever we thought the other needed to smile, and that usually

changed his mood, just some suggestions, find a specail song, be it christian,

country, nursery rhyme, or whatever, also daddy would love it as i would make up

songs to commons tunes, like where oh where is my little doggie, i would sing

where oh where is my shitty bitty * a nickname for my oldest yorkies when he was

in trouble and his name was little bit or bitty, and i would say where oh where

is my shitty bitty , where oh where can he be, with his tail so short and his

hair so long where oh where can he be,

and then i whistled and he would come running nad i would say there oh there is

my shitty bitty here he is in my arms, and dad would laugh so hard. humor is the

best medicine for you and her. sometimes just changing a yucky situation to a

singing situation can make a whole change of attitude. worst comes to worst,

just say grandma, i have to go to teh bathroom i will be back in a few minutes,

disappear for a few minutes and often whatever was upsetting them is forgotten.

remember the frontal lobe which is the part of our brain that keeps us in line,

our knowledge of right and wrong, in appropraoite and appropraite is damaged so

they have no clue that it isnt right to say to the nurse wow nice honkers, and

grab them like my dad did. my dad told his favorite aide who gave him baths

her name was but daddy insisted on calliing her Evey at first she hated

it then she begen to like it, she was the sweetest afro american lady you would

have ever met, patience of

mother theresa, smile of the clown and the sensitiviy of a compassionate

person. well she walks in and says hi mr andersen and he says hi evey my nigger

bathing lady. OMG i was embarassed to the hilt, i just knew she was going to

tell us she was never going to come back again, and after she did her usual

excellent work i walked her to teh door and i said evelyn, i am so embarassed

and so sorry for what my daddy said, she took me by the hand and said Sharon,

when your dad was growing up we were called niggers, colored folk, blacks, and

he is going back in time in his mind. so in his mind i am a nigger, he didnt

bother me, that is appropraite for his age, now if he was 30 years younger i

would have done my job today and never come back to your house but your dad

meant no harm, then she added taht she was extremely grateful that i cared

enough to talk to her about it instead of acting like it didnt happen, and gave

me a hug and came back same time the next day with the

same smile as always.

so it all boils down to how YOU look at things, you cant look at things your

way but there way, and even that is tough, just do your best and join us for

pity parties, we will help you and join you and let you vent, this group was so

good to me when donnie went out of town and daddy was full of in appropriate

comments and activites all the time. there should be two theme songs for this

group one is WE ARE FAMILY BY sister sledge, and the second which is hte

ringtone i have for all my lbder friends on my cell, I WILL SURVIVE by gloria

gaynor.

good luck and hugs sharon

Holly Castaneda wrote:

Thank you for the welcome...in the last 3 hours that I've been reading

the groups situation, I no longer feel alone, I relate to many situations that

people have gone through because we gone through as well, I have pore patients

and understanding of my grandmother, and I now feel guilty that I was soooo

upset at her. I've learned alot and the input is very valuable. I've already

made changes after some suggestions from the group. And I enjoy the " Pity Party "

adhd5464 wrote: Welcome to Lewyville!

We are a wonderful place to vent, as well as have your questions

answered.

Probably all of us have had the night you had last night. We

understand, and know how much you might have loved to have yelled,

but didn't. I think that is where much of the caregiver builds their

stress levels.

Find out what is working for some in terms of keeping the LO in

nights and days. there will be a plethora of answers, I am sure.

I am mostly on the question side of this disease, but can give you

empathy all day long.

hang in, and vent often!

Carol

If you throw yourself a pity party, most of us will show up! We love

to party!

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

[Guest guest]

Holly: I just copied the Google on Reglan and am

adding it here. I note it says to talk with doctor if

the person is on insulin. Don't mean to alarm you,

but you might want to know more about it.

What is the most important information I should know

about metoclopramide?

Call your doctor immediately if you experience

uncontrollable movements or muscle spasms of your

arms, legs, lips, jaw, tongue, face, or other body

part; or if you experience unexplained anxiety,

agitation, jitteriness, shortness of breath, or

insomnia. These symptoms could be early signs of a

serious side effect requiring immediate treatment.

Use caution when driving, operating machinery, or

performing other hazardous activities. Metoclopramide

may cause drowsiness. If you experience drowsiness,

avoid these activities.

What is metoclopramide?

Metoclopramide increases the rate at which the stomach

and intestines move during digestion. It also

increases the rate at which the stomach empties into

the intestines and increases the strength of the lower

esophageal sphincter (the muscle between the stomach

and esophagus).

Metoclopramide is used to treat diabetic gastric

stasis (slow movement of the stomach), which causes

symptoms such as nausea, vomiting, heartburn,

decreased appetite, and prolonged fullness after

eating. It is also used to treat gastric reflux or

heartburn (the regurgitation of stomach acid into the

esophagus), prevention of postoperative nausea and

vomiting, prevention of nausea and vomiting associated

with cancer chemotherapy, facilitation of small bowel

intubation, and to facilitate x-ray examination of the

stomach and intestines.

Metoclopramide may also be used for purposes other

than those listed in this medication guide.

What should I discuss with my healthcare provider

before taking metoclopramide?

Do not take metoclopramide if you have

bleeding, an injury, or an obstruction in your

stomach; pheochromocytoma; or epilepsy or another

seizure disorder. These conditions make it dangerous

to use metoclopramide.

Before taking this medication, tell your doctor if you

have:

kidney disease;

a history of depression;

Parkinson's disease;

diabetes;

high blood pressure; or

recently had stomach surgery.

You may not be able to take metoclopramide, or you may

require a dosage adjustment or special monitoring

during treatment if you have any of the conditions

listed above.

Metoclopramide is in the FDA pregnancy category B.

This means that it is unlikely to harm an unborn baby.

Do not take metoclopramide without first talking to

your doctor if you are pregnant.

Metoclopramide passes into breast milk. Do not take

metoclopramide without first talking to your doctor if

you are breast-feeding a baby.

How should I take metoclopramide?

Take metoclopramide exactly as directed by your

doctor. If you do not understand these directions, ask

your pharmacist, nurse, or doctor to explain them to

you.

Take each dose with a full glass of water.

To ensure that you get a correct dose, measure the

liquid form of metoclopramide with a special

dose-measuring spoon or cup, not with a regular table

spoon. If you do not have a dose-measuring device, ask

your pharmacist where you can get one.

Metoclopramide is available as both a syrup and a

concentrated solution. Although the dose remains the

same, the amount of liquid needed to make a dose is

different. Follow your doctor's instructions.

Metoclopramide is usually taken four times a day, 30

minutes before meals and at bedtime. Follow your

doctor's instructions.

Store metoclopramide at room temperature away from

moisture and heat.

What happens if I miss a dose?

Take the missed dose as soon as you remember. However,

if it is almost time for your next dose, skip the

missed dose and take only your next regularly

scheduled dose. Do not take a double dose of this

medication.

What happens if I overdose?

Seek emergency medical attention.

Symptoms of a metoclopramide overdose include

drowsiness; confusion; uncontrollable movements of the

arms, legs, face, or tongue; muscle spasm of the neck;

tremor; irritability; and agitation.

What should I avoid while taking metoclopramide?

Use caution when driving, operating machinery, or

performing other hazardous activities. Metoclopramide

may cause drowsiness. If you experience drowsiness,

avoid these activities.

What are the possible side effects of metoclopramide?

If you experience any of the following serious side

effects, stop taking metoclopramide and seek emergency

medical attention or contact your doctor immediately:

an allergic reaction (difficulty breathing; closing of

your throat; swelling of your lips, tongue, or face;

or hives);

uncontrollable movements or spasms of your arms, legs,

lips, jaw, tongue, face, or other body part;

anxiety, agitation, jitteriness, difficulty breathing,

or insomnia;

depression;

yellowing of the skin or eyes;

changes in vision;

an irregular heartbeat; or

seizures or hallucinations.

Other, less serious side effects may be more likely to

occur. Continue to take metoclopramide and talk to

your doctor if you experience

nausea or diarrhea;

dizziness, drowsiness, or headache;

confusion;

fluid retention (swelling of hands or legs, bloating);

breast tenderness or swelling;

changes in your menstrual cycle; or

increased frequency of urination.

Side effects other than those listed here may also

occur. Talk to your doctor about any side effect that

seems unusual or that is especially bothersome.

What other drugs will affect metoclopramide?

Tell your doctor if you have taken a monoamine oxidase

inhibitor (MAOI) such as isocarboxazid (Marplan),

tranylcypromine (Parnate), or phenelzine (Nardil) in

the last 14 days. Metoclopramide must be used very

cautiously if you are taking any of these medicines.

Before taking metoclopramide, tell your doctor if you

are taking any of the following medicines:

digoxin (Lanoxin, Lanoxicaps);

cyclosporine (Sandimmune, Neoral);

tetracycline (Sumycin, others);

levodopa (Larodopa, Dopar, Sinemet);

insulin;

a narcotic pain reliever such as morphine (MS Contin,

MSIR, others), codeine, hydrocodone (Vicodin,

Hycodan), oxycodone (Percocet, Percodan, Tylox,

OxyContin), oxymorphone (Numorphan), and others; or

clidinium (Quarzan), dicyclomine (Bentyl), hyoscyamine

(Levsin, Cystospaz, Anaspaz), belladonna (Donnatal),

or propantheline (Pro-Banthine).

You may not be able to take metoclopramide, or you may

require a dosage adjustment or special monitoring if

you are taking any of the medicines listed above.

Metoclopramide may increase the effects of other drugs

that cause drowsiness, including antidepressants,

alcohol, antihistamines, sedatives (used to treat

insomnia), pain relievers, anxiety medicines, and

muscle relaxants. Tell your doctor about all medicines

that you are taking, and do not take any medicine

unless your doctor approves.

Drugs other than those listed here may also interact

with metoclopramide. Talk to your doctor and

pharmacist before taking any prescription or

over-the-counter medicines.

Where can I get more information?

Your pharmacist has more information about

metoclopramide written for health professionals that

you may read.

What does my medication look like?

Metoclopramide is available with a prescription under

the brand name Reglan. Other brand or generic

formulations may also be available. Ask your

pharmacist any questions you have about this

medication, especially if it is new to you.

Reglan 5 mg--green, elliptical tablets

Reglan 10 mg--white, capsule-shaped tablets

Reglan Syrup 5 mg per5 mL (1 teaspoon)

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

Remember, keep this and all other medicines out of the

reach of children, never share your medicines with

others, and use this medication only for the

indication prescribed.

Every effort has been made to ensure that the

information provided by Cerner Multum, Inc. ('Multum')

is accurate, up-to-date, and complete, but no

guarantee is made to that effect. Drug information

contained herein may be time sensitive. Multum

information has been compiled for use by healthcare

practitioners and consumers in the United States and

therefore Multum does not warrant that uses outside of

the United States are appropriate, unless specifically

indicated otherwise. Multum's drug information does

not endorse drugs, diagnose patients or recommend

therapy. Multum's drug information is an informational

resource designed to assist licensed healthcare

practitioners in caring for their patients and/or to

serve consumers viewing this service as a supplement

to, and not a substitute for, the expertise, skill,

knowledge and judgment of healthcare practitioners.

The absence of a warning for a given drug or drug

combination in no way should be construed to indicate

that the drug or drug combination is safe, effective

or appropriate for any given patient. Multum does not

assume any responsibility for any aspect of healthcare

administered with the aid of information Multum

provides. The information contained herein is not

intended to cover all possible uses, directions,

precautions, warnings, drug interactions, allergic

reactions, or adverse effects. If you have questions

about the drugs you are taking, check with your

doctor, nurse or pharmacist.

Copyright 1996-2003 Cerner Multum, Inc. Version: 4.06.

Revision date: 8/30/04.

--- Holly Castaneda

wrote:

> Thank you for your warm welcome. O copied and

> pasted a diagram that assists me to keep track of

> her meds: Morning

> Evening

> 1. Glucophage 500 mg

>

> Glucophage 500 mg

> 2. Metoprolol 100mg

>

> Metoprolol 100mg

> 3. Namenda 10mg

>

> Namenda 10mg

> 4. Colace 100mg

>

> Colace 100mg

> 5. Lantus (25 units)

>

> Lipitor 20mg

> 6. Amiodarone 200mg

>

> Seroquel 50 mg

> 7. Nexium 40 mg

>

> Coumdian 2.5mg

> 8. Reglan 10mg

>

> Cymbalta 60mg

> 9. Multi-Vitamin

>

> 10. Arricept 10mg

>

> **Regular Insulin (PRN) Refer to Sliding Scale

> **

> **Ultram 50 mg as Needed**

>

>

>

> gaat wrote: HI Holly and

> welcome to the group. What meds is your grandmother

> taking?

> Courage

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with

> LBD last week.

> Before thaat I had never heard of it. She's a tough

> cookie....and she

> wearing both my mother and I out. Last night was

> rough...she kept

> haloring out our names every 15 minutes...this

> started at 10pm and went

> on till 4:30 am. At times she would get stuck in the

> bed rails trying

> to wander out at night, she instead in taking a

> shower at 0100 in the

> morning. I work 12 hour shifts and get up to work at

> 5 am. At times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can

> converse well with us.

> Then there are nightd that she is soooo stuborn,

> lost in her time ( by

> that I mean she'll ask me if I fed the pigs? ...we

> have no pigs) then

> there are days that she takes of her diapers and

> runs around the house

> naked....

>

> My mother sometimes thinks that she makes things up

> or trying to fool

> us...

>

> I am confused, frusterated and stressed.....

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Hello June,

Thank you for the information on Reglan. It did alarm me when I read

everything. I remember one of the attending at the hospital trying to take her

off the Reglan, and what happens is she tends to feel very full and unable to

swallow her food. That seems to go away when she on the Reglan. What I plan to

do is ask the doctor if there is something else we can try instead of the

Reglan, she has an appointment in a week. Thank you June. And I have already

changed all of the Arricept in the her medication box to the morning.

June Christensen wrote:

Holly: I just copied the Google on Reglan and am

adding it here. I note it says to talk with doctor if

the person is on insulin. Don't mean to alarm you,

but you might want to know more about it.

What is the most important information I should know

about metoclopramide?

Call your doctor immediately if you experience

uncontrollable movements or muscle spasms of your

arms, legs, lips, jaw, tongue, face, or other body

part; or if you experience unexplained anxiety,

agitation, jitteriness, shortness of breath, or

insomnia. These symptoms could be early signs of a

serious side effect requiring immediate treatment.

Use caution when driving, operating machinery, or

performing other hazardous activities. Metoclopramide

may cause drowsiness. If you experience drowsiness,

avoid these activities.

What is metoclopramide?

Metoclopramide increases the rate at which the stomach

and intestines move during digestion. It also

increases the rate at which the stomach empties into

the intestines and increases the strength of the lower

esophageal sphincter (the muscle between the stomach

and esophagus).

Metoclopramide is used to treat diabetic gastric

stasis (slow movement of the stomach), which causes

symptoms such as nausea, vomiting, heartburn,

decreased appetite, and prolonged fullness after

eating. It is also used to treat gastric reflux or

heartburn (the regurgitation of stomach acid into the

esophagus), prevention of postoperative nausea and

vomiting, prevention of nausea and vomiting associated

with cancer chemotherapy, facilitation of small bowel

intubation, and to facilitate x-ray examination of the

stomach and intestines.

Metoclopramide may also be used for purposes other

than those listed in this medication guide.

What should I discuss with my healthcare provider

before taking metoclopramide?

Do not take metoclopramide if you have

bleeding, an injury, or an obstruction in your

stomach; pheochromocytoma; or epilepsy or another

seizure disorder. These conditions make it dangerous

to use metoclopramide.

Before taking this medication, tell your doctor if you

have:

kidney disease;

a history of depression;

Parkinson's disease;

diabetes;

high blood pressure; or

recently had stomach surgery.

You may not be able to take metoclopramide, or you may

require a dosage adjustment or special monitoring

during treatment if you have any of the conditions

listed above.

Metoclopramide is in the FDA pregnancy category B.

This means that it is unlikely to harm an unborn baby.

Do not take metoclopramide without first talking to

your doctor if you are pregnant.

Metoclopramide passes into breast milk. Do not take

metoclopramide without first talking to your doctor if

you are breast-feeding a baby.

How should I take metoclopramide?

Take metoclopramide exactly as directed by your

doctor. If you do not understand these directions, ask

your pharmacist, nurse, or doctor to explain them to

you.

Take each dose with a full glass of water.

To ensure that you get a correct dose, measure the

liquid form of metoclopramide with a special

dose-measuring spoon or cup, not with a regular table

spoon. If you do not have a dose-measuring device, ask

your pharmacist where you can get one.

Metoclopramide is available as both a syrup and a

concentrated solution. Although the dose remains the

same, the amount of liquid needed to make a dose is

different. Follow your doctor's instructions.

Metoclopramide is usually taken four times a day, 30

minutes before meals and at bedtime. Follow your

doctor's instructions.

Store metoclopramide at room temperature away from

moisture and heat.

What happens if I miss a dose?

Take the missed dose as soon as you remember. However,

if it is almost time for your next dose, skip the

missed dose and take only your next regularly

scheduled dose. Do not take a double dose of this

medication.

What happens if I overdose?

Seek emergency medical attention.

Symptoms of a metoclopramide overdose include

drowsiness; confusion; uncontrollable movements of the

arms, legs, face, or tongue; muscle spasm of the neck;

tremor; irritability; and agitation.

What should I avoid while taking metoclopramide?

Use caution when driving, operating machinery, or

performing other hazardous activities. Metoclopramide

may cause drowsiness. If you experience drowsiness,

avoid these activities.

What are the possible side effects of metoclopramide?

If you experience any of the following serious side

effects, stop taking metoclopramide and seek emergency

medical attention or contact your doctor immediately:

an allergic reaction (difficulty breathing; closing of

your throat; swelling of your lips, tongue, or face;

or hives);

uncontrollable movements or spasms of your arms, legs,

lips, jaw, tongue, face, or other body part;

anxiety, agitation, jitteriness, difficulty breathing,

or insomnia;

depression;

yellowing of the skin or eyes;

changes in vision;

an irregular heartbeat; or

seizures or hallucinations.

Other, less serious side effects may be more likely to

occur. Continue to take metoclopramide and talk to

your doctor if you experience

nausea or diarrhea;

dizziness, drowsiness, or headache;

confusion;

fluid retention (swelling of hands or legs, bloating);

breast tenderness or swelling;

changes in your menstrual cycle; or

increased frequency of urination.

Side effects other than those listed here may also

occur. Talk to your doctor about any side effect that

seems unusual or that is especially bothersome.

What other drugs will affect metoclopramide?

Tell your doctor if you have taken a monoamine oxidase

inhibitor (MAOI) such as isocarboxazid (Marplan),

tranylcypromine (Parnate), or phenelzine (Nardil) in

the last 14 days. Metoclopramide must be used very

cautiously if you are taking any of these medicines.

Before taking metoclopramide, tell your doctor if you

are taking any of the following medicines:

digoxin (Lanoxin, Lanoxicaps);

cyclosporine (Sandimmune, Neoral);

tetracycline (Sumycin, others);

levodopa (Larodopa, Dopar, Sinemet);

insulin;

a narcotic pain reliever such as morphine (MS Contin,

MSIR, others), codeine, hydrocodone (Vicodin,

Hycodan), oxycodone (Percocet, Percodan, Tylox,

OxyContin), oxymorphone (Numorphan), and others; or

clidinium (Quarzan), dicyclomine (Bentyl), hyoscyamine

(Levsin, Cystospaz, Anaspaz), belladonna (Donnatal),

or propantheline (Pro-Banthine).

You may not be able to take metoclopramide, or you may

require a dosage adjustment or special monitoring if

you are taking any of the medicines listed above.

Metoclopramide may increase the effects of other drugs

that cause drowsiness, including antidepressants,

alcohol, antihistamines, sedatives (used to treat

insomnia), pain relievers, anxiety medicines, and

muscle relaxants. Tell your doctor about all medicines

that you are taking, and do not take any medicine

unless your doctor approves.

Drugs other than those listed here may also interact

with metoclopramide. Talk to your doctor and

pharmacist before taking any prescription or

over-the-counter medicines.

Where can I get more information?

Your pharmacist has more information about

metoclopramide written for health professionals that

you may read.

What does my medication look like?

Metoclopramide is available with a prescription under

the brand name Reglan. Other brand or generic

formulations may also be available. Ask your

pharmacist any questions you have about this

medication, especially if it is new to you.

Reglan 5 mg--green, elliptical tablets

Reglan 10 mg--white, capsule-shaped tablets

Reglan Syrup 5 mg per5 mL (1 teaspoon)

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

Remember, keep this and all other medicines out of the

reach of children, never share your medicines with

others, and use this medication only for the

indication prescribed.

Every effort has been made to ensure that the

information provided by Cerner Multum, Inc. ('Multum')

is accurate, up-to-date, and complete, but no

guarantee is made to that effect. Drug information

contained herein may be time sensitive. Multum

information has been compiled for use by healthcare

practitioners and consumers in the United States and

therefore Multum does not warrant that uses outside of

the United States are appropriate, unless specifically

indicated otherwise. Multum's drug information does

not endorse drugs, diagnose patients or recommend

therapy. Multum's drug information is an informational

resource designed to assist licensed healthcare

practitioners in caring for their patients and/or to

serve consumers viewing this service as a supplement

to, and not a substitute for, the expertise, skill,

knowledge and judgment of healthcare practitioners.

The absence of a warning for a given drug or drug

combination in no way should be construed to indicate

that the drug or drug combination is safe, effective

or appropriate for any given patient. Multum does not

assume any responsibility for any aspect of healthcare

administered with the aid of information Multum

provides. The information contained herein is not

intended to cover all possible uses, directions,

precautions, warnings, drug interactions, allergic

reactions, or adverse effects. If you have questions

about the drugs you are taking, check with your

doctor, nurse or pharmacist.

Copyright 1996-2003 Cerner Multum, Inc. Version: 4.06.

Revision date: 8/30/04.

--- Holly Castaneda

wrote:

> Thank you for your warm welcome. O copied and

> pasted a diagram that assists me to keep track of

> her meds: Morning

> Evening

> 1. Glucophage 500 mg

>

> Glucophage 500 mg

> 2. Metoprolol 100mg

>

> Metoprolol 100mg

> 3. Namenda 10mg

>

> Namenda 10mg

> 4. Colace 100mg

>

> Colace 100mg

> 5. Lantus (25 units)

>

> Lipitor 20mg

> 6. Amiodarone 200mg

>

> Seroquel 50 mg

> 7. Nexium 40 mg

>

> Coumdian 2.5mg

> 8. Reglan 10mg

>

> Cymbalta 60mg

> 9. Multi-Vitamin

>

> 10. Arricept 10mg

>

> **Regular Insulin (PRN) Refer to Sliding Scale

> **

> **Ultram 50 mg as Needed**

>

>

>

> gaat wrote: HI Holly and

> welcome to the group. What meds is your grandmother

> taking?

> Courage

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with

> LBD last week.

> Before thaat I had never heard of it. She's a tough

> cookie....and she

> wearing both my mother and I out. Last night was

> rough...she kept

> haloring out our names every 15 minutes...this

> started at 10pm and went

> on till 4:30 am. At times she would get stuck in the

> bed rails trying

> to wander out at night, she instead in taking a

> shower at 0100 in the

> morning. I work 12 hour shifts and get up to work at

> 5 am. At times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can

> converse well with us.

> Then there are nightd that she is soooo stuborn,

> lost in her time ( by

> that I mean she'll ask me if I fed the pigs? ...we

> have no pigs) then

> there are days that she takes of her diapers and

> runs around the house

> naked....

>

> My mother sometimes thinks that she makes things up

> or trying to fool

> us...

>

> I am confused, frusterated and stressed.....

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

holly,

my dad had difficulty sleeping, so i tried a few tricks on the trade. at

walmart thiere is a fabric softener called simple pleasures it is lavendar and

vanilla, scented, i washed all of dads, towels, sheets and even clothes in it,

he loved hte scent and lavendar is a natural relaxant, if candles are liked you

can light a lavendar calendar in a safe place and that culd prove relaxing. also

dad had bowle and urinary control problems and i swear by liquid oxyclean, arm

and hammer now makes a liquid laudnry detergent with oxyclean and then use the

simple pleasures lavendar and daddy would calm down. febreze also has a

lavendar smell that you can spray pillows and curtains and things down and it

owrks wonders. again i would use the 3 breaths tricks deep breaths dad, smell

the pretty lavendar flowers and now blow out the birthday candles, 3 times or

more and it was miraculaous at times taht something so simple could hlep, i

still use lavendar to this day. also, i would

massage dads feet with lightly scented lavendar lotion. and use the shampoo and

body wash too. he loved it when i used raspberry on me, and never complained

about the lavendar for him as it was soft scented not overwhelming. sometimes

when nites were really bad, i would spray lavedar oil on a hanky or washcloth

and stick it near the head of dads bed and that would help. sometimes hot

chocolate before going to sleep was relaxing, too. we would boht have a cup

before going to bed. course mine was spiked with butterscotch schnapps. lol.

sometimes covering or removing things like glass doors or mirrors that had

reflections that may cuase distress were removed too. also i dont know if this

is possible we got daddy his own little kitten we kept its food and water and

toys in dads room, we broguth it home and said donnies boss got it for him and

he siad he didnt want it, so i took it out of the room and was talking to the

kitten said i am sorry daddy doesnt want you we

will find you another home tomorrow and about 2 minutes later i herad dad yell,

where is my cat. he wanted to name it troulbes but i called it stormy as i had

a dog killed by a possum one week prior that was troubles and i wasnt ready for

that name to be used again. so we compromise stormy troubles. well that cat

slept with dad, and ate with dad, shared food off dads plate and whenever dad

started having severe parkinsinsms stormy would get in dads lap and purr as loud

as he culd to elt me knew somoething was worng. with daddy . daddy would stroke

him sometimes rough as his hands shook terribly and as he calmed down teh

storking was more gentle too, that cat never left dad side when he was having a

bad day, and when dad was having a good day, he would catch lizards and bring

dad presents. i wasnt happy but that was stormy's way of saying i love you.

that cat sulked for 2 months when dadddy died. so it as amazing whata you might

be able to do to get their moood changed

quickly and discreetly, hugs. sharon

Holly Castaneda wrote:

Thank you Donna, My grandmother is on the

Namenda 10 mg twice a day once in the a.m. and the second at bedtime

Seroquel 50mg at bed time

and Arricept 10mg at bedtime.

Someone in the group hust made me aware about Arricept waking up the brain, so

1st thing tomorrow morning I plan to change that to the a.m.

I am will to try anything to try to help get my grandmother to sleep at bedtime.

I would be happy with 4 straight hours of sleep)

I am going to suggest to my mother that we take turns with gramma since it does

take a toll on the both of us.

And I'm going to look for the Melatonin tonight.

Thank you for the links, those were very informative. I've printed everything

out from there website.

The " Pity Party " is actually been very theraputical to me and my mother.

Everything The group shares with me I share with her...and I can see changes

with her srtress and frusterations.

Holly

wrote:

Holly - I agree we Donna - your grandmother should be checked for a

UTI... Welcome to the board - glad you found us! Let us know what

meds your grandmother is on. The one document that should be referred

to like a 'Lewy-bible' Dr. Bradley Boeve's paper - read here:

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php

Other good reads are:

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://www.lewybodydementia.org/AR0504BFB.php

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the

most detailed, accurate information I've ever read about LBD. I think

it should be sent to all new caregivers AND doctors who aren't clear.

Thoughts everyone? " Keli says, " Definately yes!!! This is very

informative yet not overwhelming. It can easily be shared with

others. I intend to have my husband and children read it, and

hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/DS/00795.html

LBD Brochure

(to print use legal size paper)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

Live Chat Event with Dr. Gomperts, MD

Dr. Gomperts answered your questions on this Q & A session with Dr.

Gomperts, MD

http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

from Risperidone; Mom fell into the 50% category of those who could

not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

> Holly,

>

> Welcome,

>

> You may not have heard of LBD before, but it sure sounds like you

are living it. My Mom was up every other night for 3 years. At

times it seemed to me she knew, but eventually I knew she wasn't

faking.

>

> If you go to the bottom of this email and find " Links " and " Lists "

you will find out lots of information about LBD that we have

collected. Many times Mom was given Meds that just didn't work. The

MDs are just starting to diagnosis it, much less understand the

Meds. My Mom was one who just couldn't do meds as they made her

worse, not better. At one point I was cutting an anti-anxiety pill

in quarters and giving her quarter of a pill all day. It worked

fine. Other than that I was fighting with MDs all the time to take

her off drugs.

>

> Check out what meds she is on and how much, and we can help you

know which might be a problem. Most MDs use to much and to fast.

And it makes things worse.

>

> Also, when Mom got upset, the MD that finally worked with me,

always said, " Bring her in and we will check for UTI.. (Urinary.

Track. Infection) And she always had one. And I would forget the

next time. But we would do it all over again. I just always tried

to remember, " Mom is scared, what can I do to help her fears. " The

more fears I calmed, the easier time I had. (Not that I could always

do that either.)

>

> Keep night lights on for her at night. Keep glaring glass covered,

(it makes for " lots of people " Mirrors, windows and pictures.

>

> So you will learn to live with Lewy. And come here for that Pity

Party that Carol was talking about. Sometimes you just have to

spout. You and your Mom will hopefully find a way to trade nights if

and when you need, so one of you isn't up all the time.. There is an

over the counter med called Melatonin that I could give Mom with no

bad effects. And even if she didn't sleep, she stayed calm and in

bed. You will learn to do whatever works.

>

> Glad you are here.

>

> Hugs,

>

> Donna R

>

>

> Caregave for Mom (after I brought her from WI to MI) for 3 years

and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other than mine.

>

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

>

>

>

>

[Guest guest]

Holly,

I did hear that most OTC sleep meds are not a good idea for dementia> Don't

know if it is true. But that is why I used Melatonin.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Hello

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At

times I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with

us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

>

>

>

>

[Guest guest]

Hi Holly - your grandmother is on a lot of meds. Let me copy/paste

what Dr. Gomperts said re: too many meds...

" Many patients with LBD are exquisitely sensitive to medications.

That makes medical treatment a real challenge.

On the whole, I advocate for minimizing and streamlining the

medication regimen; stripping away every unnecessary agent. That

reduces the probability of medication side effects and medication

interactions. "

On the topic of SLEEP he said:

" Another good (and hard) question. Sleep problems are common in LBD.

Patients often sleep during the day (many for more than 2 hours

total), and that can lead to nighttime wakefulness. This can even

lead to full-blown sleep-wake reversal.

This can be hard to treat. One thing to do is to try to minimize

daytime naps, as possible, to help the patient return to a nighttime

sleep pattern. It is also important to have your loved one's doctor

review his medications, to check whether some of his night-time dosed

medications may in fact be activating him, and if some of his

morning/day time medications may be contributing to daytime

somnolence. If that's the case, it may be possible to move the

activating medications to morning, and the sleep-enhancing

medications to night.

Another approach would be to substitute in an otherwise equivalent

medication for another to provide more morning activation or more

nighttime sleepiness. Sleep medications like benzodiazepines can

cause confusion, and should be avoided.

An antidepressant that provides a little sleepiness, however, may be

worthwhile. "

I remember during my mom's journey that most of her regular meds were

removed - which I found odd - but mom's side effects to meds were

extreme and the less meds the better for her...

Where do you live? I ask b/c I'm currently working on a LBD-savvy

database - I'm at almost 700 doctors world-wide - so there may be a

LBD-savvy doctor listed already in your area. Here's another thing

that Dr. Gomperts said re: finding a doctor that will work for the LO

with LBD:

" General neurologists (and General Practitioners and Internists) have

the option to refer to Dementia and Movement specialists to get

additional input on LBD management. A patient can always request a

referral. Dementia doctors tend to focus on the cognitive problems,

and movement doctors on the motor complaints, but that is not always

the rule. "

(an example of why he wrote the above - Dr. Gomperts is a memory &

movement disorder specialist. He has no openings in the memory

disorder clinic but he does in the movement disorder clinic - so to

get an appt. w/ Dr. Gomperts you have to call the movement disorder

clinic - not your first thought when finding a doctor for LBD - but

LBD has movement disorders - so good piece of advice.)

PS this is the link to the transcript:

http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

PPS let me know where you live so I can look at the database for a

LBD-savvy doctor in your area... and if anyone else is interested,

send me a personal email... these doctors have yet to be confirmed as

LBD-savvy (we're going to be calling/emailing to get confirmation)

but some are no-brainers as specialists since they're the doctors who

have written publications about LBD in the past - IMO those are the

specialists... and I've added most of those doctors to this database

already (still have a ways to go) but almost there...

HI Holly and welcome to the group.

What meds is your grandmother taking?

> Courage

>

> Hello

>

> My name is Holly, my grandmother was diagnosid with LBD last week.

> Before thaat I had never heard of it. She's a tough cookie....and

she

> wearing both my mother and I out. Last night was rough...she kept

> haloring out our names every 15 minutes...this started at 10pm and

went

> on till 4:30 am. At times she would get stuck in the bed rails

trying

> to wander out at night, she instead in taking a shower at 0100 in

the

> morning. I work 12 hour shifts and get up to work at 5 am. At times

I

> wanted to yell at her...but I didn't.

>

> Sometimes she's ok ...mentally alert and can converse well with us.

> Then there are nightd that she is soooo stuborn, lost in her time (

by

> that I mean she'll ask me if I fed the pigs? ...we have no pigs)

then

> there are days that she takes of her diapers and runs around the

house

> naked....

>

> My mother sometimes thinks that she makes things up or trying to

fool

> us...

>

> I am confused, frusterated and stressed.....

>

>

[Guest guest]

Hello, my name is Alba.

I am a new member of the NYCCAT e-group.

I am a spanish intermodal art-therapist. I am coming to New York on 5th July, to do internships in a Brooklyn Psychiatric Hospital, and in a rehabilitation program in Albany. I am in touch with the New York Expressive Arts studio.

I would like to get in touch with art therapy movement in New York, that's how I have ended up finding your association, and I would also like to find job.

Anyway, what I would also like to ask you is that I am looking for a room, for this july and august that I will be in N.Y., in Brooklyn if possible. So if you have an spare room, or you know any other cheap possibility, please let me know.

It has been 4 years since I started a master, and other trainings in intermodal art therapy. I have been working mostly with children affairs, but also with adults with mental illness. I thought that it would be an enrichment for me, as a person and as an art therapist, to travel abroad, and keep on learning and experience from other points of view.

So if you have any idea to share about all this, we can keep on talking.

I hope you are doing fine, and summer is bringing you good new experiences.

Alba

Alba

artist & art-therapist

http://www.at-albatorres.com/ (only in catalan language)

[Guest guest]

Sent from my iPhone.