Re: I need some advice

[Guest guest]

My mother is also 83 and has been in hospice for about 11 or 12

months. She has Parkinson's and Lewy Body so has a lot of physical

pain.

The goal of hospice is pain control and comfort, not anything that

would aim at a cure, prolong life, or making a person healthier in

any respect. You have to aim your requests and comments as pain

control or comfort oriented to get your point across--but also wait

a while to see what happens after a couple weeks.

We had my mother on zyprexa, thyroid pills, assorted stuff like coQ

10 which is supposed to be good for the heart. All that was stopped

when she went into hospice although she now gets more pain meds. And

once she was off all the original meds for a while, she seemed to be

better. It took a while to get the chemicals out of her system, but

when that happened she had a lot more awake-and-alert time.

By the way, my mother eats kleenex if she gets hold of it. She tells

me it is baked right there in the nh kitchen and is very tasty.

>

> Hi Everyone

>

> I just wanted to get your opinion on my current drug

> situation. My mother who is 83 was just accepted to

> hospice and that doctor did some drug reducing on my

> mom. He stopped some the her long time drugs like

> Lisinopril for blood pressure, Mevacor for high

> cholesterol, Prozac for depression, Primidone for

> shaking and Aricept for memory. I took her off the

> Aricept and have noticed a decline in communication.

> She was always fairly quite, but now if I ask her a

> question I am lucky to get a response at all and if I

> do it is some off the wall answer about 80% of the

> time. She seems to be very preoccupied with fiddling

> around with Kleenex, which isn't really bad except

> when she does it ALL NIGHT LONG!!! She has done this

> for the past 4 days and nights. She seems to cat nap

> and wakes up and plays with the tissues. She will then

> begin to talk to her " Lewy Friends " and jabbering on

> and on. I have just learned to lower the volume on the

> baby monitor so my husband can sleep. She is still

> taking Pepcid for stomach, Lopressor for heart and

> blood pressure, Namenda for her mind, Risperdal for

> hallucinations and Clonazepam for whatever, I am not

> even sure why. She is shaking a lot more also. Mostly

> likely due to the discontinuing of the Primidone, but

> she does not seem to notice. When I have spoken to the

> nurse regarding this she just has the same pat answer

> which is try the Ativan or how about Haldol. So my

> question is this what ever can I ask for instead? I

> have already asked for Seroquel twice, to the doctor

> and nurse. I am not sure why, except for ignorance,

> that keep insisting that I have the Ativan so try it.

> I have refused and of course, when I tell them

> why(because of this group)they just look at me like I

> am the crazy one. Is there any documentation on why

> Ativan and Haldol are bad for Lewy Body patients? Does

> anyone have any info on this for me? These doctors

> just lump her in the all the other Alzheimer's

> patients and figure they know what they are doing. I

> am just afraid to try it. After 4 days with little

> sleep for her and myself I gave her another 1/2 of a

> risperdal last night, which I hated to do, but she did

> finally sleep well. She did okay but I don't even want

> her on that so I hate to up it. What can you say to a

> doctor when your requests for a different drug go on

> deaf ears? I am just frustrated right now. Thanks for

> listening to me blow off some steam.

>

> Dena

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Dena,

I don't have specific answers for you but I will try to get some

tomorrow. I have a co-worker who is a former hospice nurse. I am

sure she can shed some light on this for you.

Kathy S

[Guest guest]

Dena,

Risperdal has serious side effects that produce Parkinson-like symptoms. I know

of one adult friend and two girls with Rett syndrome to whom it was given for

behavior problems, only to end up with severe tremor and permanent jerking

movements. I can't imagine why someone would prescribe it to a patient with

LBD, but on the other hand, if it calms them and nothing else does, I suppose

you have no choice. My doctor says there is an upside and a downside to EVERY

medication, no matter how seemingly benign, even Tylenol. I hope you find a

solution soon.

I need some advice

Hi Everyone

I just wanted to get your opinion on my current drug

situation. My mother who is 83 was just accepted to

hospice and that doctor did some drug reducing on my

mom. He stopped some the her long time drugs like

Lisinopril for blood pressure, Mevacor for high

cholesterol, Prozac for depression, Primidone for

shaking and Aricept for memory. I took her off the

Aricept and have noticed a decline in communication.

She was always fairly quite, but now if I ask her a

question I am lucky to get a response at all and if I

do it is some off the wall answer about 80% of the

time. She seems to be very preoccupied with fiddling

around with Kleenex, which isn't really bad except

when she does it ALL NIGHT LONG!!! She has done this

for the past 4 days and nights. She seems to cat nap

and wakes up and plays with the tissues. She will then

begin to talk to her " Lewy Friends " and jabbering on

and on. I have just learned to lower the volume on the

baby monitor so my husband can sleep. She is still

taking Pepcid for stomach, Lopressor for heart and

blood pressure, Namenda for her mind, Risperdal for

hallucinations and Clonazepam for whatever, I am not

even sure why. She is shaking a lot more also. Mostly

likely due to the discontinuing of the Primidone, but

she does not seem to notice. When I have spoken to the

nurse regarding this she just has the same pat answer

which is try the Ativan or how about Haldol. So my

question is this what ever can I ask for instead? I

have already asked for Seroquel twice, to the doctor

and nurse. I am not sure why, except for ignorance,

that keep insisting that I have the Ativan so try it.

I have refused and of course, when I tell them

why(because of this group)they just look at me like I

am the crazy one. Is there any documentation on why

Ativan and Haldol are bad for Lewy Body patients? Does

anyone have any info on this for me? These doctors

just lump her in the all the other Alzheimer's

patients and figure they know what they are doing. I

am just afraid to try it. After 4 days with little

sleep for her and myself I gave her another 1/2 of a

risperdal last night, which I hated to do, but she did

finally sleep well. She did okay but I don't even want

her on that so I hate to up it. What can you say to a

doctor when your requests for a different drug go on

deaf ears? I am just frustrated right now. Thanks for

listening to me blow off some steam.

Dena

__________________________________________________

[Guest guest]

Hi Dona,

We had mom taken off all meds except aricept and I noticed that mom's

tremor is worse but she isn't using her arms and hands anymore so why

bother with the drugs.

Try looking up information about drugs on the website. I believe it is

in the file section. Print off a copy if you can and take it to them.

I'm sure there are plenty of people here who would be willing to speak

to these people at hospice directly as well. Have you had a chance to

download a LBD brochure to bring in to them?

Best of luck

Courage

[Guest guest]

Dena,

I think if you go to the .org site after my name, you will fine in the links

section, other MD advice re: drugs. If not, it is on the Yahoo page.

We have lots of MDs advice from our SAC (Scientific Advisory Council) and I am

just not sure which site it is located at but I think it is the LBDA site.

I will check it too and try and find it. This might help your MD UNDERSTAND.

:-)

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

I need some advice

Hi Everyone

I just wanted to get your opinion on my current drug

situation. My mother who is 83 was just accepted to

hospice and that doctor did some drug reducing on my

mom. He stopped some the her long time drugs like

Lisinopril for blood pressure, Mevacor for high

cholesterol, Prozac for depression, Primidone for

shaking and Aricept for memory. I took her off the

Aricept and have noticed a decline in communication.

She was always fairly quite, but now if I ask her a

question I am lucky to get a response at all and if I

do it is some off the wall answer about 80% of the

time. She seems to be very preoccupied with fiddling

around with Kleenex, which isn't really bad except

when she does it ALL NIGHT LONG!!! She has done this

for the past 4 days and nights. She seems to cat nap

and wakes up and plays with the tissues. She will then

begin to talk to her " Lewy Friends " and jabbering on

and on. I have just learned to lower the volume on the

baby monitor so my husband can sleep. She is still

taking Pepcid for stomach, Lopressor for heart and

blood pressure, Namenda for her mind, Risperdal for

hallucinations and Clonazepam for whatever, I am not

even sure why. She is shaking a lot more also. Mostly

likely due to the discontinuing of the Primidone, but

she does not seem to notice. When I have spoken to the

nurse regarding this she just has the same pat answer

which is try the Ativan or how about Haldol. So my

question is this what ever can I ask for instead? I

have already asked for Seroquel twice, to the doctor

and nurse. I am not sure why, except for ignorance,

that keep insisting that I have the Ativan so try it.

I have refused and of course, when I tell them

why(because of this group)they just look at me like I

am the crazy one. Is there any documentation on why

Ativan and Haldol are bad for Lewy Body patients? Does

anyone have any info on this for me? These doctors

just lump her in the all the other Alzheimer's

patients and figure they know what they are doing. I

am just afraid to try it. After 4 days with little

sleep for her and myself I gave her another 1/2 of a

risperdal last night, which I hated to do, but she did

finally sleep well. She did okay but I don't even want

her on that so I hate to up it. What can you say to a

doctor when your requests for a different drug go on

deaf ears? I am just frustrated right now. Thanks for

listening to me blow off some steam.

Dena

__________________________________________________

[Guest guest]

Dear Donna

Thanks for the info. I have printed on several things

now and I feel a little more ready to speak to doctor

or nurse when they come next. You guys are great!!

Thanks again

Dena

--- Donna Mido wrote:

> Dena,

>

> I think if you go to the .org site after my name,

> you will fine in the links section, other MD advice

> re: drugs. If not, it is on the Yahoo page.

>

> We have lots of MDs advice from our SAC (Scientific

> Advisory Council) and I am just not sure which site

> it is located at but I think it is the LBDA site.

>

> I will check it too and try and find it. This might

> help your MD UNDERSTAND. :-)

>

>

> 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

>

>

> I need some advice

>

> Hi Everyone

>

> I just wanted to get your opinion on my current drug

> situation. My mother who is 83 was just accepted to

> hospice and that doctor did some drug reducing on my

> mom. He stopped some the her long time drugs like

> Lisinopril for blood pressure, Mevacor for high

> cholesterol, Prozac for depression, Primidone for

> shaking and Aricept for memory. I took her off the

> Aricept and have noticed a decline in communication.

> She was always fairly quite, but now if I ask her a

> question I am lucky to get a response at all and if

> I

> do it is some off the wall answer about 80% of the

> time. She seems to be very preoccupied with fiddling

> around with Kleenex, which isn't really bad except

> when she does it ALL NIGHT LONG!!! She has done this

> for the past 4 days and nights. She seems to cat nap

> and wakes up and plays with the tissues. She will

> then

> begin to talk to her " Lewy Friends " and jabbering on

> and on. I have just learned to lower the volume on

> the

> baby monitor so my husband can sleep. She is still

> taking Pepcid for stomach, Lopressor for heart and

> blood pressure, Namenda for her mind, Risperdal for

> hallucinations and Clonazepam for whatever, I am not

> even sure why. She is shaking a lot more also.

> Mostly

> likely due to the discontinuing of the Primidone,

> but

> she does not seem to notice. When I have spoken to

> the

> nurse regarding this she just has the same pat

> answer

> which is try the Ativan or how about Haldol. So my

> question is this what ever can I ask for instead? I

> have already asked for Seroquel twice, to the doctor

> and nurse. I am not sure why, except for ignorance,

> that keep insisting that I have the Ativan so try

> it.

> I have refused and of course, when I tell them

> why(because of this group)they just look at me like

> I

> am the crazy one. Is there any documentation on why

> Ativan and Haldol are bad for Lewy Body patients?

> Does

> anyone have any info on this for me? These doctors

> just lump her in the all the other Alzheimer's

> patients and figure they know what they are doing. I

> am just afraid to try it. After 4 days with little

> sleep for her and myself I gave her another 1/2 of a

> risperdal last night, which I hated to do, but she

> did

> finally sleep well. She did okay but I don't even

> want

> her on that so I hate to up it. What can you say to

> a

> doctor when your requests for a different drug go on

> deaf ears? I am just frustrated right now. Thanks

> for

> listening to me blow off some steam.

>

> Dena

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Courage

Thanks for the info. Yes, I do have broucher down

loaded. I have printed off lots of info for nurse and

Dr. Thanks for the advise. My mom is now off of

Aricept too. Yes, she does not make sense now most of

the time. But really what difference does it make. To

be with it more and hate they way you are and know how

awful this disease is or be out of it most of the

time? Her tremors have gotten a lot worse too, but as

you say she only uses her hands to play with a napkin

or tissue, and she does try to eat them also so I have

to watch that. I will be praying that God remembers

are Mom's. thanks again Courage

Dena

--- gaat wrote:

> Hi Dona,

>

> We had mom taken off all meds except aricept and I

> noticed that mom's

> tremor is worse but she isn't using her arms and

> hands anymore so why

> bother with the drugs.

> Try looking up information about drugs on the

> website. I believe it is

> in the file section. Print off a copy if you can

> and take it to them.

> I'm sure there are plenty of people here who would

> be willing to speak

> to these people at hospice directly as well. Have

> you had a chance to

> download a LBD brochure to bring in to them?

> Best of luck

> Courage

>

>

>

__________________________________________________

[Guest guest]

Hi

I have not wanted to keep my mom on Risperdal since I

joined this group back in July of 05 I think it was.

But she is still on it. I am going to speak to nurse I

think today and see if I get anywhere. I have my info

printed and will try to educate her. I only see the

Dr. every 12 weeks, but the nurse comes once a week.

Thanks for your insight

Dena

--- wrote:

> Dena,

>

> Risperdal has serious side effects that produce

> Parkinson-like symptoms. I know of one adult friend

> and two girls with Rett syndrome to whom it was

> given for behavior problems, only to end up with

> severe tremor and permanent jerking movements. I

> can't imagine why someone would prescribe it to a

> patient with LBD, but on the other hand, if it calms

> them and nothing else does, I suppose you have no

> choice. My doctor says there is an upside and a

> downside to EVERY medication, no matter how

> seemingly benign, even Tylenol. I hope you find a

> solution soon.

>

>

> I need some advice

>

>

> Hi Everyone

>

> I just wanted to get your opinion on my current

> drug

> situation. My mother who is 83 was just accepted

> to

> hospice and that doctor did some drug reducing on

> my

> mom. He stopped some the her long time drugs like

> Lisinopril for blood pressure, Mevacor for high

> cholesterol, Prozac for depression, Primidone for

> shaking and Aricept for memory. I took her off the

> Aricept and have noticed a decline in

> communication.

> She was always fairly quite, but now if I ask her

> a

> question I am lucky to get a response at all and

> if I

> do it is some off the wall answer about 80% of the

> time. She seems to be very preoccupied with

> fiddling

> around with Kleenex, which isn't really bad except

> when she does it ALL NIGHT LONG!!! She has done

> this

> for the past 4 days and nights. She seems to cat

> nap

> and wakes up and plays with the tissues. She will

> then

> begin to talk to her " Lewy Friends " and jabbering

> on

> and on. I have just learned to lower the volume on

> the

> baby monitor so my husband can sleep. She is still

> taking Pepcid for stomach, Lopressor for heart and

> blood pressure, Namenda for her mind, Risperdal

> for

> hallucinations and Clonazepam for whatever, I am

> not

> even sure why. She is shaking a lot more also.

> Mostly

> likely due to the discontinuing of the Primidone,

> but

> she does not seem to notice. When I have spoken to

> the

> nurse regarding this she just has the same pat

> answer

> which is try the Ativan or how about Haldol. So my

> question is this what ever can I ask for instead?

> I

> have already asked for Seroquel twice, to the

> doctor

> and nurse. I am not sure why, except for

> ignorance,

> that keep insisting that I have the Ativan so try

> it.

> I have refused and of course, when I tell them

> why(because of this group)they just look at me

> like I

> am the crazy one. Is there any documentation on

> why

> Ativan and Haldol are bad for Lewy Body patients?

> Does

> anyone have any info on this for me? These doctors

> just lump her in the all the other Alzheimer's

> patients and figure they know what they are doing.

> I

> am just afraid to try it. After 4 days with little

> sleep for her and myself I gave her another 1/2 of

> a

> risperdal last night, which I hated to do, but she

> did

> finally sleep well. She did okay but I don't even

> want

> her on that so I hate to up it. What can you say

> to a

> doctor when your requests for a different drug go

> on

> deaf ears? I am just frustrated right now. Thanks

> for

> listening to me blow off some steam.

>

> Dena

>

>

>

> __________________________________________________

>

[Guest guest]

Hi (I did not get a name)

Thank you for your input. My mom will eat kleenex

also, but they give her something to do. She fiddles

with me all day long. And when she goes to wipe her

nose or mouth she just uses her hand. She lives in my

home with me so I can watch her pretty carefully.

Dena

--- steviegail wrote:

> My mother is also 83 and has been in hospice for

> about 11 or 12

> months. She has Parkinson's and Lewy Body so has a

> lot of physical

> pain.

>

> The goal of hospice is pain control and comfort, not

> anything that

> would aim at a cure, prolong life, or making a

> person healthier in

> any respect. You have to aim your requests and

> comments as pain

> control or comfort oriented to get your point

> across--but also wait

> a while to see what happens after a couple weeks.

>

> We had my mother on zyprexa, thyroid pills, assorted

> stuff like coQ

> 10 which is supposed to be good for the heart. All

> that was stopped

> when she went into hospice although she now gets

> more pain meds. And

> once she was off all the original meds for a while,

> she seemed to be

> better. It took a while to get the chemicals out of

> her system, but

> when that happened she had a lot more

> awake-and-alert time.

>

> By the way, my mother eats kleenex if she gets hold

> of it. She tells

> me it is baked right there in the nh kitchen and is

> very tasty.

>

>

>

>

> >

> > Hi Everyone

> >

> > I just wanted to get your opinion on my current

> drug

> > situation. My mother who is 83 was just accepted

> to

> > hospice and that doctor did some drug reducing on

> my

> > mom. He stopped some the her long time drugs like

> > Lisinopril for blood pressure, Mevacor for high

> > cholesterol, Prozac for depression, Primidone for

> > shaking and Aricept for memory. I took her off the

> > Aricept and have noticed a decline in

> communication.

> > She was always fairly quite, but now if I ask her

> a

> > question I am lucky to get a response at all and

> if I

> > do it is some off the wall answer about 80% of the

> > time. She seems to be very preoccupied with

> fiddling

> > around with Kleenex, which isn't really bad except

> > when she does it ALL NIGHT LONG!!! She has done

> this

> > for the past 4 days and nights. She seems to cat

> nap

> > and wakes up and plays with the tissues. She will

> then

> > begin to talk to her " Lewy Friends " and jabbering

> on

> > and on. I have just learned to lower the volume on

> the

> > baby monitor so my husband can sleep. She is still

> > taking Pepcid for stomach, Lopressor for heart and

> > blood pressure, Namenda for her mind, Risperdal

> for

> > hallucinations and Clonazepam for whatever, I am

> not

> > even sure why. She is shaking a lot more also.

> Mostly

> > likely due to the discontinuing of the Primidone,

> but

> > she does not seem to notice. When I have spoken to

> the

> > nurse regarding this she just has the same pat

> answer

> > which is try the Ativan or how about Haldol. So my

> > question is this what ever can I ask for instead?

> I

> > have already asked for Seroquel twice, to the

> doctor

> > and nurse. I am not sure why, except for

> ignorance,

> > that keep insisting that I have the Ativan so try

> it.

> > I have refused and of course, when I tell them

> > why(because of this group)they just look at me

> like I

> > am the crazy one. Is there any documentation on

> why

> > Ativan and Haldol are bad for Lewy Body patients?

> Does

> > anyone have any info on this for me? These doctors

> > just lump her in the all the other Alzheimer's

> > patients and figure they know what they are doing.

> I

> > am just afraid to try it. After 4 days with little

> > sleep for her and myself I gave her another 1/2 of

> a

> > risperdal last night, which I hated to do, but she

> did

> > finally sleep well. She did okay but I don't even

> want

> > her on that so I hate to up it. What can you say

> to a

> > doctor when your requests for a different drug go

> on

> > deaf ears? I am just frustrated right now. Thanks

> for

> > listening to me blow off some steam.

> >

> > Dena

> >

> >

> >

> > __________________________________________________

> >