Why meds may not be working

[Guest guest]

Dear caregivers.

I’d like to add my opinion on the subject of medications.

One important point I would like to make, is that paranoia is a

common trait of patients with Dementia with Lewy Bodies, because of their

hallucinations and delusions. You have to put yourself in the patient’s place

to understand the patient’s fear. With some patient’s, their brain is telling

them that they are in danger and they may believe someone is trying to hurt

them. For instance, my MIL thought there was poison gas coming out of the

electrical outlets in her house. She thought she was being poisoned and she

lacked the cognitive ability to recognize her illness.

We had her hospitalized and she managed to fool the doctors and

nurses by spitting out and throwing away her medication after they were out of

sight. When she came home with us, (unstabilized), this behavior continued for

about 8 weeks while we tried to adjust the medication (not knowing she was

spitting out and hiding her medicine). We happened to see her throw the

medication away when she thought we weren’t looking. After we discovered this,

since my wife was her legal guardian, we melted her medication and placed it in

delicious ice cream sodas, which are her favorite. (Consult your physician to

see if it's okay to melt the meds). Presto! She became stabilized in a short

time and we were able to lower the dosage (which she wasn’t getting in the first

place because she was spitting it out). The delusions and hallucinations

disappeared. She was released from her life of fear and is now able to

communicate with her loved ones. At 90 years she can play cards

with a senior companion, and often win! This was 8 years ago and we’ve had no

problem with hallucinations or delusions since. Her medications weren’t meant

to cure the disease, just to quiet the horrible delusions and hallucinations she

suffered from so she can communicate with her loved ones and enjoy her life.

By carefully observing the patient’s behavior, you should be able to determine

whether or not the patient is actually taking the medication. (They may hide it

in their mouth and spit it out when your back is turned).

It should be noted, because there is such a great difference between Atypical

Neuroleptic and Typical or Standard Neuroleptic drugs, great care must be taken

when considering which particular drug to allow to be used.

In my MIL’s case, we do not allow anyone to give her the following

drugs:

All Standard or Typical neuroleptic drugs such as, but not limited to: Haldol

(Haloperidol), Thorazine (Chlorpromazine), Prolixin (Fluphenazine), Trilafon

(Perphenazine), Compazine (Prochlorperazine), Mellaril (Thioridazine), Stelazine

(trifluoperazine), Mesoridazine (Serentil) or Orap (Pimozide).

She may not take Ativan (Lorazepam).

She may not take Xanax (Alprazolam

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

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[Guest guest]

gthroop1, If she has been better, then please do tell us what she IS taking.

Thanks

Imogene

In a message dated 3/22/2006 8:45:36 AM Central Standard Time,

gthroop1@... writes:

Dear caregivers.

I’d like to add my opinion on the subject of medications.

One important point I would like to make, is that paranoia is a common trait

of patients with Dementia with Lewy Bodies, because of their hallucinations

and delusions. You have to put yourself in the patient’s place to

understand the patient’s fear. With some patient’s, their brain is telling

them

that they are in danger and they may believe someone is trying to hurt them.

For instance, my MIL thought there was poison gas coming out of the electrical

outlets in her house. She thought she was being poisoned and she lacked the

cognitive ability to recognize her illness.

We had her hospitalized and she managed to fool the doctors and nurses by

spitting out and throwing away her medication after they were out of sight.

When she came home with us, (unstabilized), this behavior continued for about 8

weeks while we tried to adjust the medication (not knowing she was spitting

out and hiding her medicine). We happened to see her throw the medication

away when she thought we weren’t looking. After we discovered this, since my

wife was her legal guardian, we melted her medication and placed it in

delicious ice cream sodas, which are her favorite. (Consult your physician to

see

if it's okay to melt the meds). Presto! She became stabilized in a short

time and we were able to lower the dosage (which she wasn’t getting in the

first place because she was spitting it out). The delusions and hallucinations

disappeared. She was released from her life of fear and is now able to

communicate with her loved ones. At 90 years she can play cards

with a senior companion, and often win! This was 8 years ago and we’ve had

no problem with hallucinations or delusions since. Her medications weren’t

meant to cure the disease, just to quiet the horrible delusions and

hallucinations she suffered from so she can communicate with her loved ones and

enjoy

her life.

By carefully observing the patient’s behavior, you should be able to

determine whether or not the patient is actually taking the medication. (They

may

hide it in their mouth and spit it out when your back is turned).

It should be noted, because there is such a great difference between

Atypical Neuroleptic and Typical or Standard Neuroleptic drugs, great care must

be

taken when considering which particular drug to allow to be used.

In my MIL’s case, we do not allow anyone to give her the following drugs:

All Standard or Typical neuroleptic drugs such as, but not limited to:

Haldol (Haloperidol), Thorazine (Chlorpromazine), Prolixin (Fluphenazine),

Trilafon (Perphenazine), Compazine (Prochlorperazine), Mellaril (Thioridazine),

Stelazine (trifluoperazine), Mesoridazine (Serentil) or Orap (Pimozide).

She may not take Ativan (Lorazepam).

She may not take Xanax (Alprazolam

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

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PhotoMail - it's free and works with Yahoo! Mail.

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

Welcome to LBDcaregivers.

[Guest guest]

Gerald,

Can you tell me why your MIL was not able to take Xanax? I know it

is a benzodiazepine and there can be interactions with other drugs.

However, my mother had been on it for a number of years for anxiety

syndrome/panic attacks, before she had or was diagnosed with Lewie

Body. She is still at this point able to tell when she needs one

(now that all her meds are fixed). Once we got the dose down to very

minimal (.125 mg every 8 hours), she has been fine on it.

All the others on your list are on our list to not give her as well.

Thanks!

You are very lucky that your MIL is as good as she is especially at

her age. I hope she remains like that throughout the course.

>

> Dear caregivers.

> I'd like to add my opinion on the subject of medications.

> One important point I would like to make, is that

paranoia is a common trait of patients with Dementia with Lewy

Bodies, because of their hallucinations and delusions. You have to

put yourself in the patient's place to understand the patient's

fear. With some patient's, their brain is telling them that they

are in danger and they may believe someone is trying to hurt them.

For instance, my MIL thought there was poison gas coming out of the

electrical outlets in her house. She thought she was being poisoned

and she lacked the cognitive ability to recognize her illness.

> We had her hospitalized and she managed to fool the

doctors and nurses by spitting out and throwing away her medication

after they were out of sight. When she came home with us,

(unstabilized), this behavior continued for about 8 weeks while we

tried to adjust the medication (not knowing she was spitting out and

hiding her medicine). We happened to see her throw the medication

away when she thought we weren't looking. After we discovered this,

since my wife was her legal guardian, we melted her medication and

placed it in delicious ice cream sodas, which are her favorite.

(Consult your physician to see if it's okay to melt the meds).

Presto! She became stabilized in a short time and we were able to

lower the dosage (which she wasn't getting in the first place

because she was spitting it out). The delusions and hallucinations

disappeared. She was released from her life of fear and is now able

to communicate with her loved ones. At 90 years she can play cards

> with a senior companion, and often win! This was 8 years ago and

we've had no problem with hallucinations or delusions since. Her

medications weren't meant to cure the disease, just to quiet the

horrible delusions and hallucinations she suffered from so she can

communicate with her loved ones and enjoy her life.

> By carefully observing the patient's behavior, you should be

able to determine whether or not the patient is actually taking the

medication. (They may hide it in their mouth and spit it out when

your back is turned).

>

> It should be noted, because there is such a great difference

between Atypical Neuroleptic and Typical or Standard Neuroleptic

drugs, great care must be taken when considering which particular

drug to allow to be used.

> In my MIL's case, we do not allow anyone to give her

the following drugs:

> All Standard or Typical neuroleptic drugs such as, but not

limited to: Haldol (Haloperidol), Thorazine (Chlorpromazine),

Prolixin (Fluphenazine), Trilafon (Perphenazine), Compazine

(Prochlorperazine), Mellaril (Thioridazine), Stelazine

(trifluoperazine), Mesoridazine (Serentil) or Orap (Pimozide).

> She may not take Ativan (Lorazepam).

> She may not take Xanax (Alprazolam

>

>

>

> ---------------------------------

> Brings words and photos together (easily) with

> PhotoMail - it's free and works with Yahoo! Mail.

>

>

[Guest guest]

Hello ,

Xanax does not agree with my MIL. The list I gave for my MIL's No-Medication

list shouldn't be interpreted as a blanket statement for everyone. Some

patients are able to take and do well with medications which other patients may

not be able to tolerate. This is just her list. knowledgeable physicians need

to manage the medications.

I think it's wonderful that your mother is doing so well. Amy and I know

the feeling of relief when the patient is stabilized and able to interact with

loved ones. My MIL takes 1mg 2x per day of Risperdal and has done extremely

well for the past 8 years. Her recent neurological examination showed

absolutely no side effects of the drug. This is an Atypical Neuroleptic drug

she can handle very well. Through the years we've also used vitamin E with

wonderful results, although not every patient can take it and it should only be

used with the supervision of a physician.

wrote:

Gerald,

Can you tell me why your MIL was not able to take Xanax? I know it

is a benzodiazepine and there can be interactions with other drugs.

However, my mother had been on it for a number of years for anxiety

syndrome/panic attacks, before she had or was diagnosed with Lewie

Body. She is still at this point able to tell when she needs one

(now that all her meds are fixed). Once we got the dose down to very

minimal (.125 mg every 8 hours), she has been fine on it.

All the others on your list are on our list to not give her as well.

Thanks!

You are very lucky that your MIL is as good as she is especially at

her age. I hope she remains like that throughout the course.

>

> Dear caregivers.

> I'd like to add my opinion on the subject of medications.

> One important point I would like to make, is that paranoia is a

common trait of patients with Dementia with Lewy Bodies, because of their

hallucinations and delusions. You have to put yourself in the patient's place

to understand the patient's fear. With some patients, their brain is telling

them that they are in danger and they may believe someone is trying to hurt

them. For instance, my MIL thought there was poison gas coming out of the

electrical outlets in her house. She thought she was being poisoned and she

lacked the cognitive ability to recognize her illness.

> We had her hospitalized and she managed to fool the doctors and nurses by

spitting out and throwing away her medication after they were out of sight.

When she came home with us, (unstabilized), this behavior continued for about 8

weeks while we tried to adjust the medication (not knowing she was spitting out

and

hiding her medicine). We happened to see her throw the medication away when she

thought we weren't looking. After we discovered this, since my wife was her

legal guardian, we melted her medication and placed it in delicious ice cream

sodas, which are her favorite.

(Consult your physician to see if it's okay to melt the meds).

Presto! She became stabilized in a short time and we were able to lower the

dosage (which she wasn't getting in the first place because she was spitting it

out). The delusions and hallucinations disappeared. She was released from her

life of fear and is now able to communicate with her loved ones. At 90 years

she can play cards with a senior companion, and often win! This was 8 years ago

and we've had no problem with hallucinations or delusions since. Her

medications weren't meant to cure the disease, just to quiet the

horrible delusions and hallucinations she suffered from so she can communicate

with her loved ones and enjoy her life.

> By carefully observing the patient's behavior, you should be able to

determine whether or not the patient is actually taking the medication. (They

may hide it in their mouth and spit it out when your back is turned).

>

> It should be noted, because there is such a great difference between

Atypical Neuroleptic and Typical or Standard Neuroleptic drugs, great care must

be taken when considering which particular drug to allow to be used.

> In my MIL's case, we do not allow anyone to give her the following drugs:

> All Standard or Typical neuroleptic drugs such as, but not limited to:

Haldol (Haloperidol), Thorazine (Chlorpromazine), Prolixin (Fluphenazine),

Trilafon (Perphenazine), Compazine (Prochlorperazine), Mellaril (Thioridazine),

Stelazine (trifluoperazine), soridazine (Serentil) or Orap (Pimozide).

> She may not take Ativan (Lorazepam).

> She may not take Xanax (Alprazolam

>

>

>

> ---------------------------------

> Brings words and photos together (easily) with

> PhotoMail - it's free and works with Yahoo! Mail.

>

>

[Guest guest]

Thanks for your answer. It was a great relief when we got her

stabilized recently. Our family has just in the last couple of days

decided to take her out of Hospice so she can go back to some

Physical Therapy since she is now walking again but needs to build

strength some. No one at the nh is going to help us with that

unless we get her into structured therapy which the doctor can

order. They will only pay for it until she reaches her recognized

potential, but she definitely now has the ability to improve.

The Risperdal made my mother totally crazy, so she had about two

days worth of it. Glad that has worked so well for your MIL.

My mother used to be on Vitamin E, but not for anything related to

the Lewie Body. What is the effect for your MIL? I believe my mom

was initially put on it for a variety of things, including to

improve her immune system when she was battling repeated bouts of

pneumonia.

Thanks!

> >

> > Dear caregivers.

> > I'd like to add my opinion on the subject of medications.

> > One important point I would like to make, is that

paranoia is a common trait of patients with Dementia with Lewy

Bodies, because of their hallucinations and delusions. You have to

put yourself in the patient's place to understand the patient's

fear. With some patients, their brain is telling them that they are

in danger and they may believe someone is trying to hurt them. For

instance, my MIL thought there was poison gas coming out of the

> electrical outlets in her house. She thought she was being

poisoned and she lacked the cognitive ability to recognize her

illness.

> > We had her hospitalized and she managed to fool the doctors

and nurses by spitting out and throwing away her medication after

they were out of sight. When she came home with us, (unstabilized),

this behavior continued for about 8 weeks while we tried to adjust

the medication (not knowing she was spitting out and

> hiding her medicine). We happened to see her throw the medication

away when she thought we weren't looking. After we discovered this,

since my wife was her legal guardian, we melted her medication and

placed it in delicious ice cream sodas, which are her favorite.

> (Consult your physician to see if it's okay to melt the meds).

> Presto! She became stabilized in a short time and we were able to

lower the dosage (which she wasn't getting in the first place

because she was spitting it out). The delusions and hallucinations

disappeared. She was released from her life of fear and is now able

to communicate with her loved ones. At 90 years she can play cards

with a senior companion, and often win! This was 8 years ago and

we've had no problem with hallucinations or delusions since. Her

medications weren't meant to cure the disease, just to quiet the

> horrible delusions and hallucinations she suffered from so she can

communicate with her loved ones and enjoy her life.

> > By carefully observing the patient's behavior, you should be

able to determine whether or not the patient is actually taking the

medication. (They may hide it in their mouth and spit it out when

your back is turned).

> >

> > It should be noted, because there is such a great difference

between Atypical Neuroleptic and Typical or Standard Neuroleptic

drugs, great care must be taken when considering which particular

drug to allow to be used.

> > In my MIL's case, we do not allow anyone to give her the

following drugs:

> > All Standard or Typical neuroleptic drugs such as, but not

limited to: Haldol (Haloperidol), Thorazine (Chlorpromazine),

Prolixin (Fluphenazine), Trilafon (Perphenazine), Compazine

(Prochlorperazine), Mellaril (Thioridazine), Stelazine

(trifluoperazine), soridazine (Serentil) or Orap (Pimozide).

> > She may not take Ativan (Lorazepam).

> > She may not take Xanax (Alprazolam

> >

> >

> >

> > ---------------------------------

> > Brings words and photos together (easily) with

> > PhotoMail - it's free and works with Yahoo! Mail.

> >

> >

[Guest guest]

,

That is the drug I gave Mom, Xanax. And it was in the last year of her life.

And I cut the .50mg in quarters and gave it to her 4x a day. I know it was a

no-no drug, but the only one she tolorated at all. And it just leveled her out

so she could function.

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: Why meds may not be working

[Guest guest]

Donna,

Yes - it works that way with my mom too. It isn't always an

automatic no-no drug, just one of the ones to be careful with.

Depends what else they are on too. And the dose is about as small

as it could get too.

I hope you feel better and the flu doesn't get you too badly!

PS - Sorry I wasn't able to call last night - I will get in touch

with you soon.

>

> ,

>

> That is the drug I gave Mom, Xanax. And it was in the last year

of her life. And I cut the .50mg in quarters and gave it to her 4x

a day. I know it was a no-no drug, but the only one she tolorated

at all. And it just leveled her out so she could function.

>

> 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: Why meds may not be working

>

>

>

>

>

[Guest guest]

,

Ssomeone got mixed up, or my message was incorrect. I don't have the flu, Ann

the owner of this site has the flu. So far I am fine. My son did have it a

couple of weeks ago and he was as sick as Ann sounds,

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: Why meds may not be working

[Guest guest]

Well, good, glad you don't have it!! I did get confused between you

and Ann and who had the flu! A Senior Moment!

>

> ,

>

> Ssomeone got mixed up, or my message was incorrect. I don't have

the flu, Ann the owner of this site has the flu. So far I am

fine. My son did have it a couple of weeks ago and he was as sick

as Ann sounds,

>

> 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: Why meds may not be working

>

>

>

>

>

[Guest guest]

Well, good, glad you don't have it!! I did get confused between you

and Ann and who had the flu! A Senior Moment!

Me, too!