Re: Re:Thanks everyone!/Donna

[Guest guest]

Hi Donna,

I live in California, in the San Francisco Bay Area, I

have read others messages to you and they are right.

Your mom is on a very high dosage of Seroquel. I am

glad that you called the doctor to split your mom's

dosage in half and not give it to her all at once.

With LBD the least amount of dosage is best. Our LOs

(Loved Ones) seem to be highly sensitive to

medications. I don't know how much dosage of Sinemet

is given to your mom, but maybe you could have the

dosage lowered on Sinemet too. My husband's Sinemet is

a blue pill and it is 25mg.

It is: (25/250 Carbidopa 25mg Levodopa 250mg)

Carbidopa/Levodopa is Sinemet. When my husband first

started taking Sinemet in 1993 he was on Sinemet that

was a yellow pill and less milligrams. My husband is

on 100mg of Seroquel a day now. You might look into a

sleeping pill to help your mother sleep, instead of a

lot of Seroquel at night. For Example: One 25mg

Seroquel plus a sleeping pill. Many here could give

you a name of a sleeping pill their LO is on. I have

heard some are on Lunesta and others take alternative

medication; like from a health food store for sleep.

My husband was put on Vicodin many years ago for his

Restless Leg Syndrom, another symptom of LBD. The

Vicodin at night helps him to sleep, so I have not had

to use a sleeping pill for him. They now have Requip

for Restless Leg Syndrom and it would be a nightmare

to wean him off of Vicodin now after all these years.

You are a wonderful daughter to offer to take your mom

to help your sisters when you live so far away. Many

of us have families with no support from them. Your

mom is very fortunate to have such caring daughters.

Hugs to you, Jan

--- DONNA DEIHL wrote:

> hi janet my name is donna d i live in fla my mom

> is in pa with my sisters i just had her here for a

> month so i can help out my sisters my mom is on

> 300 ml of seroquel and everything i read she

> seems to be on a high dose. she is also on sinemet

> but there are alot of days she acts like a

> walking steven king novel it sucks to see her so

> scared so much of the time. my sister is taking

> her back to dr's on fri and i hope they can find

> something that works for her cause seroquil dont

> seem to be doing much of anything. does 300 ml of

> seroguel alot to u at first she was taking it all

> at once at night and i called her dr so i can

> split the pill in half because i started noticing

> more of a pattern on when the hallucinations start.

> and ideas ill take them thanks donnad

>

> Janet Colello wrote: Hi

> Debbie,

> I am going through much the same as you with my

> husband's combativeness. Sometimes the medications

> need to be cut in half, it is too much dosage for

> them, less is best when it comes to medications with

> LBD, because they are highly sensitive to them and

> other times they just need to come off of it. Don't

> ever take a medication away that your father has

> been

> on without a doctor's permission, some need to be

> weaned off of gradually or there could be other

> complications. I recognize many of your dad's

> medications from this group. My husband is on

> Seroquel

> 25mg 4X a day. For hallucinations and aggression. I

> believe Quetiapine is Seroquel. Sinemet is for

> Parkinsons to help with being less rigid. As you

> have

> parobably heard here, Sinemet works against

> Seroquel.

> Sinemet can cause hallucinations. It is a fine

> balance

> as with all medications and you have to find the

> right

> balance. Not all medications for one individual with

> LBD works for another individual with LBD. That is

> the

> frustration, because a certain mix of medications

> for

> one may be doing very well and you would want to try

> that with your LO(Loved One) and then you find it

> does

> nothing for your LO. Sinemet and Seroquel for my

> husband has worked well. He has been on Sinemet

> since

> 1993. I believe it is what has kept him from

> becoming

> too rigid after all this time. He can still walk

> with

> assistance holding onto a walker and he can pull

> himself up from a sitting position out of a chair

> holding onto a solid object to pull himself up and

> then he can transfer to another chair or to his

> walker. The Seroquel has cut down on his

> hallucinations considerably and they are not so

> scary

> to him as before. Before Seroquel, he saw bugs

> crawling on people and walls and on the floor, but

> now

> he sees people, cats and horses and they don't seem

> to

> bother him. Cats he wants out of the house, but the

> horses running through the house are ok. He has

> delusions of people being in the house and we have

> to

> whisper, so they don't hear us and we sometimes have

> to close the door of the room we are in, so they

> don't

> see us. He hides his watch and wedding ring almost

> daily, so they, the people, can't find them and

> then

> he forgets where he hid them. They turn up

> eventually

> somewhere in the house. He is paranoid of these

> people. They are not the people that he sees in

> hallucinations, they are delusions in his mind that

> they exist somewhere in the house.

> I don't baby my husband, he is an adult, but I do

> use

> some tricks that you would use with a two year old

> for

> cooperation. For example, you can not talk in your

> regular paced voice with LBD, you must when giving

> directions or instructions give one or two step

> instructions very slowly with very little wording.

> Not

> a 4 step instruction with lots of confusing words.

> It

> is frustrating for them, because they can not

> process

> all the words that you are saying and it will be

> frustrating for you to get any cooperation. With

> some

> hallucinations, such as if he sees people in the

> room.

> I will pretend to go up and escort them out of the

> room and he will be good with it. Sometimes you have

> to become part of the hallucination and be an actor

> to

> do away with the cause.

> My husband too when he was still able to get around

> on

> his own almost lit the house on fire. He left dish

> towels on hot burners and once when I came in his

> sleeve was hanging over the hot burner. After that I

> hired caregivers to stay with him when I went to

> work.

> I have since resigned from my full time job, as I

> was

> burning the candle at both ends, being my husband's

> primary caregiver with no support.

> My husband too is incontinent, mostly at night, but

> when I toilet him in the day, he has no recognition

> of

> a toilet and will pull his pants down to pee on the

> floor and his clothes or sit anywhere, such as on

> his

> wheelchair, which is really a transportation chair,

> and pee on that.

> I was venting here not long ago about an episode

> with

> my husband and toileting issues. I can not handle

> the

> peeing on the floor and other chairs. That is where

> most of the combativeness comes in with my husband

> and

> he gave me a black eye not long ago, which I was not

> expecting, because I can usually duck from his

> swings

> or hold him back, but recently I ran into a real

> problem that I didn't know I could cause. It was a

> bathroom issue again and I was trying to protect

> myself from being hit with another black eye and

> restrained his arms by holding them down, so he

> couldn't swing at me. Because of his lack of

> balance,

> I can now restrain him, because he is afraid of

> moving

> to get away for fear of falling. I had no idea that

> my

> strength on holding his arms down would cause his

> arms

> to bruise where I had my hands and I learned a

> valued

> lesson over that.

> My husband too, before he was on Seroquel and could

> get around on his own would hit me with his cane or

> attempt to.

> With the steps in the house that your father sees,

> you

> might do the acting trick and take him by the arm

> and

> say ok dad let's climb the steps and go toward where

> he sees them and see what he does, if he starts like

> he is going to take a step, take a step with him and

> ask him when are we at the top of the steps and just

> play along with it and maybe he will come to the

> conclusion that there are no steps. I have read

> where

> people here pretend to use bug spray when their LO

> sees bugs. I know it is weird to act when you know

> the

> things don't exist, but it really does get rid of

> some

> of those hallucinations after awhile when they think

> you believe them and are trying to help them. They

> do

> not live in a realistic world and you can not think

> realistically when with them. You have to get into

> their world. I know this all sounds easier said than

> done. I am also having my own frustrations and

> issues.

> I do not know what I would do without this group

> supporting me and talking me through things. I would

> have been a basket case long ago. I am on the edge

> now. LOL(Laugh Out Loud)

> Thinking of you and hoping you find some solutions.

> One way to look at it, is how I often see it. Todays

> problems will seem so small next to what you will be

> facing in a year, that you will wish you had todays

> problems back. It is all realitive to where you are

> in

> this disease.

> The people here give me so much energy when I am

> down

> and out to get up and get going. So many before me

> have been here done that and they survived and I can

> too.

> You are in my prayers for strength. Hugs, Jan

>

>

>

>

>

=== message truncated ===

__________________________________________

Yahoo! DSL – Something to write home about.

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[Guest guest]

Donna D/ Jan,

Melatonin is the OTC (over the counter) meds I used for Mom to sleep. Mostly it

just put her to sleep. I still use it myself after screwing up my sleep pattern

so bad. It puts me to sleep and doesn't have the confusing and after effects

that most have. Even other OTCs. And they are very small and easy to swallow.

Donna R

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

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Re:Thanks everyone!/Donna

Hi Donna,

I live in California, in the San Francisco Bay Area, I

have read others messages to you and they are right.

Your mom is on a very high dosage of Seroquel. I am

glad that you called the doctor to split your mom's

dosage in half and not give it to her all at once.

With LBD the least amount of dosage is best. Our LOs

(Loved Ones) seem to be highly sensitive to

medications. I don't know how much dosage of Sinemet

is given to your mom, but maybe you could have the

dosage lowered on Sinemet too. My husband's Sinemet is

a blue pill and it is 25mg.

It is: (25/250 Carbidopa 25mg Levodopa 250mg)

Carbidopa/Levodopa is Sinemet. When my husband first

started taking Sinemet in 1993 he was on Sinemet that

was a yellow pill and less milligrams. My husband is

on 100mg of Seroquel a day now. You might look into a

sleeping pill to help your mother sleep, instead of a

lot of Seroquel at night. For Example: One 25mg

Seroquel plus a sleeping pill. Many here could give

you a name of a sleeping pill their LO is on. I have

heard some are on Lunesta and others take alternative

medication; like from a health food store for sleep.

My husband was put on Vicodin many years ago for his

Restless Leg Syndrom, another symptom of LBD. The

Vicodin at night helps him to sleep, so I have not had

to use a sleeping pill for him. They now have Requip

for Restless Leg Syndrom and it would be a nightmare

to wean him off of Vicodin now after all these years.

You are a wonderful daughter to offer to take your mom

to help your sisters when you live so far away. Many

of us have families with no support from them. Your

mom is very fortunate to have such caring daughters.

Hugs to you, Jan

--- DONNA DEIHL wrote:

> hi janet my name is donna d i live in fla my mom

> is in pa with my sisters i just had her here for a

> month so i can help out my sisters my mom is on

> 300 ml of seroquel and everything i read she

> seems to be on a high dose. she is also on sinemet

> but there are alot of days she acts like a

> walking steven king novel it sucks to see her so

> scared so much of the time. my sister is taking

> her back to dr's on fri and i hope they can find

> something that works for her cause seroquil dont

> seem to be doing much of anything. does 300 ml of

> seroguel alot to u at first she was taking it all

> at once at night and i called her dr so i can

> split the pill in half because i started noticing

> more of a pattern on when the hallucinations start.

> and ideas ill take them thanks donnad

>

> Janet Colello wrote: Hi

> Debbie,

> I am going through much the same as you with my

> husband's combativeness. Sometimes the medications

> need to be cut in half, it is too much dosage for

> them, less is best when it comes to medications with

> LBD, because they are highly sensitive to them and

> other times they just need to come off of it. Don't

> ever take a medication away that your father has

> been

> on without a doctor's permission, some need to be

> weaned off of gradually or there could be other

> complications. I recognize many of your dad's

> medications from this group. My husband is on

> Seroquel

> 25mg 4X a day. For hallucinations and aggression. I

> believe Quetiapine is Seroquel. Sinemet is for

> Parkinsons to help with being less rigid. As you

> have

> parobably heard here, Sinemet works against

> Seroquel.

> Sinemet can cause hallucinations. It is a fine

> balance

> as with all medications and you have to find the

> right

> balance. Not all medications for one individual with

> LBD works for another individual with LBD. That is

> the

> frustration, because a certain mix of medications

> for

> one may be doing very well and you would want to try

> that with your LO(Loved One) and then you find it

> does

> nothing for your LO. Sinemet and Seroquel for my

> husband has worked well. He has been on Sinemet

> since

> 1993. I believe it is what has kept him from

> becoming

> too rigid after all this time. He can still walk

> with

> assistance holding onto a walker and he can pull

> himself up from a sitting position out of a chair

> holding onto a solid object to pull himself up and

> then he can transfer to another chair or to his

> walker. The Seroquel has cut down on his

> hallucinations considerably and they are not so

> scary

> to him as before. Before Seroquel, he saw bugs

> crawling on people and walls and on the floor, but

> now

> he sees people, cats and horses and they don't seem

> to

> bother him. Cats he wants out of the house, but the

> horses running through the house are ok. He has

> delusions of people being in the house and we have

> to

> whisper, so they don't hear us and we sometimes have

> to close the door of the room we are in, so they

> don't

> see us. He hides his watch and wedding ring almost

> daily, so they, the people, can't find them and

> then

> he forgets where he hid them. They turn up

> eventually

> somewhere in the house. He is paranoid of these

> people. They are not the people that he sees in

> hallucinations, they are delusions in his mind that

> they exist somewhere in the house.

> I don't baby my husband, he is an adult, but I do

> use

> some tricks that you would use with a two year old

> for

> cooperation. For example, you can not talk in your

> regular paced voice with LBD, you must when giving

> directions or instructions give one or two step

> instructions very slowly with very little wording.

> Not

> a 4 step instruction with lots of confusing words.

> It

> is frustrating for them, because they can not

> process

> all the words that you are saying and it will be

> frustrating for you to get any cooperation. With

> some

> hallucinations, such as if he sees people in the

> room.

> I will pretend to go up and escort them out of the

> room and he will be good with it. Sometimes you have

> to become part of the hallucination and be an actor

> to

> do away with the cause.

> My husband too when he was still able to get around

> on

> his own almost lit the house on fire. He left dish

> towels on hot burners and once when I came in his

> sleeve was hanging over the hot burner. After that I

> hired caregivers to stay with him when I went to

> work.

> I have since resigned from my full time job, as I

> was

> burning the candle at both ends, being my husband's

> primary caregiver with no support.

> My husband too is incontinent, mostly at night, but

> when I toilet him in the day, he has no recognition

> of

> a toilet and will pull his pants down to pee on the

> floor and his clothes or sit anywhere, such as on

> his

> wheelchair, which is really a transportation chair,

> and pee on that.

> I was venting here not long ago about an episode

> with

> my husband and toileting issues. I can not handle

> the

> peeing on the floor and other chairs. That is where

> most of the combativeness comes in with my husband

> and

> he gave me a black eye not long ago, which I was not

> expecting, because I can usually duck from his

> swings

> or hold him back, but recently I ran into a real

> problem that I didn't know I could cause. It was a

> bathroom issue again and I was trying to protect

> myself from being hit with another black eye and

> restrained his arms by holding them down, so he

> couldn't swing at me. Because of his lack of

> balance,

> I can now restrain him, because he is afraid of

> moving

> to get away for fear of falling. I had no idea that

> my

> strength on holding his arms down would cause his

> arms

> to bruise where I had my hands and I learned a

> valued

> lesson over that.

> My husband too, before he was on Seroquel and could

> get around on his own would hit me with his cane or

> attempt to.

> With the steps in the house that your father sees,

> you

> might do the acting trick and take him by the arm

> and

> say ok dad let's climb the steps and go toward where

> he sees them and see what he does, if he starts like

> he is going to take a step, take a step with him and

> ask him when are we at the top of the steps and just

> play along with it and maybe he will come to the

> conclusion that there are no steps. I have read

> where

> people here pretend to use bug spray when their LO

> sees bugs. I know it is weird to act when you know

> the

> things don't exist, but it really does get rid of

> some

> of those hallucinations after awhile when they think

> you believe them and are trying to help them. They

> do

> not live in a realistic world and you can not think

> realistically when with them. You have to get into

> their world. I know this all sounds easier said than

> done. I am also having my own frustrations and

> issues.

> I do not know what I would do without this group

> supporting me and talking me through things. I would

> have been a basket case long ago. I am on the edge

> now. LOL(Laugh Out Loud)

> Thinking of you and hoping you find some solutions.

> One way to look at it, is how I often see it. Todays

> problems will seem so small next to what you will be

> facing in a year, that you will wish you had todays

> problems back. It is all realitive to where you are

> in

> this disease.

> The people here give me so much energy when I am

> down

> and out to get up and get going. So many before me

> have been here done that and they survived and I can

> too.

> You are in my prayers for strength. Hugs, Jan

>

>

>

>

>

=== message truncated ===

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