Re: (unknown)

[Guest guest]

Hi Mariea.

Wow, what a predicament. What amount of Aricept is she taking? Aricept is

a slowing agent and supposedly promotes cognitively. It effects the levels

of acetylcholine (a neurotransmitter) in the brain. My MIL takes 10mg's

once a day and seems fine with it. I think Cheryl has had some bad

experiences with Aricept with her husband if I am not mistaken. Perhaps you

two could compare a bit? It is always scary reducing, eliminating, or

adding a drug. There are side effects to all 3. I guess for the " slowing "

factor, you could ask them to add Vitamin E (1000IU 2 times a day). My

MIL's doctor feels Vitamin E paired with Aricept can slow the progression of

healthy brain cells being attacked by the LBD cells.

I guess if it were me, I would ask for exact details in what the doctor

feels the end result would be off of the Aricept. Aricept isn't an

extremely " powerful " drug in my opinion. I would say try it, and if after 3

weeks you don't have positive results, demand she be put back on

immediately. Mariea, please don't take this the wrong way, but if in your

heart you feel she really is nearing end stage, then what do you have to

lose by giving it a try? You can always go back on the drug.

I wish you the best in making this difficult decision. Take your time,

think it over, and do what you feel is best. You know your Mom better then

any doctor could ever know her.

My prayers are with you.

(unknown)

Hi Group!

When Mom was Dx with LBD it was at the hospital. When she was seen

for the first time by the psychiatrist at the NH, he said he wasn't

convinced that Mom has LBD. After I had gotten the Dx from the

doctor at the hospital and looked up LBD the pieces fell in to

place. This is causing me some fustration. The psych at the NH

feels Mom has end stage Alz. He feels it's not LBD because she

doesn't have enough Parkinson symptoms.

They are still working on the agitation issue. I will not let them

use the antipsychotics because of the devasting effects they have on

Mom. I truely feel that she had the rapid decline because of the use

of the antipsychotics when she was hospitalized back in April of this

year. She came out worse then when she went in.

Today the psych called. He was following up from seeing Mom last

week and he had changed the doses of her Remeron and Trazodone.

Today he said he wanted to stop the Aricept. He said he has seen

this cause agitation. Mom has been taking Aricept for at least 3

years now. He is also upping the Neurontin. I'm a bit concerned

about stopping the Aricept. He said if we didn't see any change

after stopping the Aricept we could restart it. At this point I

don't know if the Aricept is really helping any more, but even if it

just the smallest help I hate the thought of what stopping it may do.

Mom has been sleeping a lot. Her appitite hasn't been real good the

past week. She is however drinking plenty of fluids. Yesterday she

started speaking clearly again. However I think this is going to be

about as good as it gets for her. Not to say that I won't stop

praying that we have better days left. I hear how LOs have these

terrible bouts with Lewy and then things seem to bounce back for a

while.

What does one due when there is a difference of opinion between you

and the specialist? He respects my refusal to use the antipsychotics

and understands my concerns about the effects they have on Mom. Does

it really make any difference in the treatment at this point, whether

it is LBD or Alz (as long as she doesn't get the antipsychotics)? It

seems to me that which ever it is, Mom is close to the end stage. I

don't think she is end stage quite yet. He feels she is end stage

Alzheimer's.

What I want is for Mom to have peace. The psych wants to keep her

comfortable. Basically the same goal.

All this seems to be wearing on me the last couple of days.

Thanks for listening.

Mariea

[Guest guest]

Mariea

This all sounds so familiar. Sounds like you only want what is best for

your mom...but not sure what " best " is at this point. You have your

opinions and thoughts, and the doctor has his. I sure wish I had some

quick advice. Is there some change your mom has recently went through

to make the doctor want to stop the Aricept? Has she been more agitated

lately? Agitation seems to be a major factor with my dad, especially if

he isn't happy and has not been taking his meds. Please keep us posted

as to what is decided. Also, I can't remember, do you hold Power of

Attorney? Apparently, with the p.o.a. over my dad, I have more power

than most p.o.a's because I have a letter from a neurologist stating

that my dad is unable to make decisions for himself, therefore

supporting the p.o.a.

Sandie

Des Moines, IA

[Guest guest]

Mariea

This all sounds so familiar. Sounds like you only want what is best for

your mom...but not sure what " best " is at this point. You have your

opinions and thoughts, and the doctor has his. I sure wish I had some

quick advice. Is there some change your mom has recently went through

to make the doctor want to stop the Aricept? Has she been more agitated

lately? Agitation seems to be a major factor with my dad, especially if

he isn't happy and has not been taking his meds. Please keep us posted

as to what is decided. Also, I can't remember, do you hold Power of

Attorney? Apparently, with the p.o.a. over my dad, I have more power

than most p.o.a's because I have a letter from a neurologist stating

that my dad is unable to make decisions for himself, therefore

supporting the p.o.a.

Sandie

Des Moines, IA

[Guest guest]

In a message dated 2002-09-06 9:35:00 PM Eastern Daylight Time,

LewyLady@... writes:

> This said, I had a long and interesting conversation today with the research

>

> coord for the study in which my LO and I are participating. He told me

> about

> the differences in how research docs and practicing docs see things. They

> are literally trained to approach a dx differently. Bottom line, I'll go

> with

> the research doc!!

>

Cheryl,

Am most interested to learn more about the conversation, when you have the

time, please.

Ev

[Guest guest]

In a message dated 9/9/02 8:44:45 AM Central Daylight Time,

cindy.vechinski@... writes:

> I thought I had seen someone in here have adverse reactions to Aricept, but

> maybe not.

Yes, there are several here/were here who had very bad reactions to Aricept -

I just don't remember who. For them Exelon often seemed to be the answer.

My wanting to fight the latter is that the Aricept is working so well, and

some transferred to Exelon haven't done well on it. So I want to milk the

Aricept for all it's worth. :-) Cheryl

[Guest guest]

In a message dated 9/9/02 8:44:45 AM Central Daylight Time,

cindy.vechinski@... writes:

> I thought I had seen someone in here have adverse reactions to Aricept, but

> maybe not.

Yes, there are several here/were here who had very bad reactions to Aricept -

I just don't remember who. For them Exelon often seemed to be the answer.

My wanting to fight the latter is that the Aricept is working so well, and

some transferred to Exelon haven't done well on it. So I want to milk the

Aricept for all it's worth. :-) Cheryl

[Guest guest]

I am happy to hear about your husband beating those odds! That is a very

good feeling indeed! I thought I had seen someone in here have adverse

reactions to Aricept, but maybe not. My MIL's doctor said if we wanted she

would let us try the Excelon, but we declined. The Seroquel and Risperidal

are working great for now.

Take care!

Re: (unknown)

In a message dated 9/6/02 6:57:06 PM Central Daylight Time,

cindy.vechinski@... writes:

> I think Cheryl has had some bad experiences with Aricept with her husband

if

> I am not mistaken.

Au contraire, . You must be thinking of someone else, because we have

had outstandingly excellent results with Aricept. There was a bad

experience, but that was in the beginning when a " novice " neurologist upped

the dosage at 2 months instead of allowing it the full 3 months to take

effect. A blessing in diguise, actually, because the s Hopkins doc took

my husband on as a regular patient, which the researchers rarely do, and

found him to be his " poster boy for what can go right. " Aricpt 5mg worked

very well for nearly 2.5 yrs, after which we bumped it up to 5mg 2x/d, about

1.5 yr ago. I remain confident that it is doing its thing.

My apologies if I am repeating myself on this list, but a lengthy

conversation with the researcher for the Predictor Studies today resulted in

a confirmation that my husband is beating the odds with decline

expectations.

We are most fortunate, and I'd fight big time with anyone who wanted to try

Exelon at this point! ;-)

Cheryl

[Guest guest]

I am happy to hear about your husband beating those odds! That is a very

good feeling indeed! I thought I had seen someone in here have adverse

reactions to Aricept, but maybe not. My MIL's doctor said if we wanted she

would let us try the Excelon, but we declined. The Seroquel and Risperidal

are working great for now.

Take care!

Re: (unknown)

In a message dated 9/6/02 6:57:06 PM Central Daylight Time,

cindy.vechinski@... writes:

> I think Cheryl has had some bad experiences with Aricept with her husband

if

> I am not mistaken.

Au contraire, . You must be thinking of someone else, because we have

had outstandingly excellent results with Aricept. There was a bad

experience, but that was in the beginning when a " novice " neurologist upped

the dosage at 2 months instead of allowing it the full 3 months to take

effect. A blessing in diguise, actually, because the s Hopkins doc took

my husband on as a regular patient, which the researchers rarely do, and

found him to be his " poster boy for what can go right. " Aricpt 5mg worked

very well for nearly 2.5 yrs, after which we bumped it up to 5mg 2x/d, about

1.5 yr ago. I remain confident that it is doing its thing.

My apologies if I am repeating myself on this list, but a lengthy

conversation with the researcher for the Predictor Studies today resulted in

a confirmation that my husband is beating the odds with decline

expectations.

We are most fortunate, and I'd fight big time with anyone who wanted to try

Exelon at this point! ;-)

Cheryl

[Guest guest]

Milk away! I don't blame you!

Re: (unknown)

In a message dated 9/9/02 8:44:45 AM Central Daylight Time,

cindy.vechinski@... writes:

> I thought I had seen someone in here have adverse reactions to Aricept,

but

> maybe not.

Yes, there are several here/were here who had very bad reactions to Aricept

-

I just don't remember who. For them Exelon often seemed to be the answer.

My wanting to fight the latter is that the Aricept is working so well, and

some transferred to Exelon haven't done well on it. So I want to milk the

Aricept for all it's worth. :-) Cheryl

[Guest guest]

>The Seroquel and Risperidal are working great for now.

I am getting on late tonight and probably several other people

have already pointed out that what works for one person does not mean

that it will work for someone else. My husbands bad reaction was to

Risperidal...he ended up in the hospital. Right now he is on just

Ativan, which for now is working somewhat but we are just starting

our quest for a cocktail that is going to work for him. Hopefully we

will have something working by Christmas as we will be traveling to

spend Christmas with our kids and I reserved a vacation rental

(house) on the ocean for 2 weeks after Christmas, I am so excited,

this is for me! Barb

[Guest guest]

Most are aware that what works for one may not work for another. That logic

applies to a lot of things in life. I don't need that pointed out to me as

I am very aware of that. That is why I am always interested in hearing what

does and doesn't work for everyone, it helps me understand what can and

can't happen.

Re: (unknown)

>The Seroquel and Risperidal are working great for now.

I am getting on late tonight and probably several other people

have already pointed out that what works for one person does not mean

that it will work for someone else. My husbands bad reaction was to

Risperidal...he ended up in the hospital. Right now he is on just

Ativan, which for now is working somewhat but we are just starting

our quest for a cocktail that is going to work for him. Hopefully we

will have something working by Christmas as we will be traveling to

spend Christmas with our kids and I reserved a vacation rental

(house) on the ocean for 2 weeks after Christmas, I am so excited,

this is for me! Barb

[Guest guest]

Most are aware that what works for one may not work for another. That logic

applies to a lot of things in life. I don't need that pointed out to me as

I am very aware of that. That is why I am always interested in hearing what

does and doesn't work for everyone, it helps me understand what can and

can't happen.

Re: (unknown)

>The Seroquel and Risperidal are working great for now.

I am getting on late tonight and probably several other people

have already pointed out that what works for one person does not mean

that it will work for someone else. My husbands bad reaction was to

Risperidal...he ended up in the hospital. Right now he is on just

Ativan, which for now is working somewhat but we are just starting

our quest for a cocktail that is going to work for him. Hopefully we

will have something working by Christmas as we will be traveling to

spend Christmas with our kids and I reserved a vacation rental

(house) on the ocean for 2 weeks after Christmas, I am so excited,

this is for me! Barb

[Guest guest]

Mariea, this answers my earlier question. I am so sorry your mom is not

doing well. In terms of her appetite, ask them if they can trial Megace.

This is a medication that stimulates appetite. Hope this is helpful.

[Guest guest]

Thanks for the info . Right now I want to see if in the next few days,

after being on the antibiotics, if Mom's appetite picks up on it's own.

The other thing, It is very hard to remove Mom's dentures. She doesn't give

them up easily. I got them out of her mouth last week and they were caked

with food. So I'm not sure if maybe things just weren't tasting right for

her. Since then I have been able to get them out more often. Then I find out

that there are findings that the elderly in NHs are getting bacterial

pneumonia. It is believed it is from the bacteria on dirty dentures being

aspirated!!

Somehow we have to come with a way to get Mom to let her dentures be cleaned

more regular. It's a deep seated issue for Mom about being seen without her

teeth, even by me. Even though she is confused, deep down she is aware!

Mariea

[Guest guest]

In a message dated 9/11/02 5:52:26 PM Central Daylight Time, mls672@...

writes:

> So I'm not sure if maybe things just weren't tasting right for her. Since

> then I have been able to get them out more often.

Mariea, for what it's worth, the researcher told me that tastes change (my

husband used to LIKE Ensure, doesn't anymore) and that we should expect them.

This is not to discount the need for antibiotics and better oral hygiene.

For me, poor oral hygiene would destroy everything I enjoy food-wise. (Well,

would that give me an easy way to lose weight? ;-) )

I don't mean to make light, but we do need a chuckle now and then. And

seriously, trouble removing dentures can create many problems - bacteria in

the mouth, halitosis, indifference to good taste, and alienation to anyone

who would come close. It is SO hard to encourage residents to part with

their dentures or any other paraphanalia for hygiene reasons - they come to

recognize them purely for cosmetic reasons.

Cheryl

[Guest guest]

>The other thing, It is very hard to remove Mom's dentures. She

>doesn't give them up easily. I got them out of her mouth last week

>and they were caked with food. So I'm not sure if maybe things just

>weren't tasting right for her. Since then I have been able to get

>them out more often. Even though she is confused, deep down she is

>aware!

Mariea, my mother was the same way even to the point of insisting

that if she was going in for an operation they had to take her teeth

out after she went under and the first thing she would ask for when

she came to was her teeth. When she was sick she would let me take

them out and clean them but they had to go right back in her mouth, I

couldn't soak them more then 5 min. while I did other cares. Mom had

some dementia after an operation and she threw a blood clot, some

things are just so deeply ingrained that even when nothing else is

making sense they are aware of things like their teeth. Barb

[Guest guest]

Shirley

Best of luck with the appeal to Kaiser. Very well put!!

Sandie

[Guest guest]

Joanne,

I agree with what you have said. Your husband is lucky to have you. I am

glad you shared your story with us, don't remember if I ever read any of

your post before. The information you wrote is certainly valuable,write as

often as you like I will pray for you and yours...Shirley

..

>

>Sorry for rambling in three E-Mails. I usually just read the posts to

>gain information. Aren't you happy I am not a frequent writer. Joanne

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

My dad is in a hospital bed provided by hospice, and they also provided an

air mattress, specifically designed for medical use. It uses a small pump,

similar to a fish tank filter pump, that keeps the air mattress under

pressure continually.

ED

[Guest guest]

Shirley

You are right knowing you need to take it one day at a time. We could

all get caught up in the " what if's " in life. Just know there are many

people praying and for what seemed it wouldn't work out, already is.

Take it one day, or even one moment at a time and with that life won't

seem so over whelming. Hang in there, stay strong, and keep us all

posted.

Praying for your strength!!

Sandie

Des Moines, IA

[Guest guest]

Shirley,

I am glad to read your post telling us you are looking for a NH for your Mom.

I have been very concerned for you after your postings last week.

Keep us all posted.

Debbie C.

[Guest guest]

Shirley

Do you trust in a higher power? Do you whole heartedly trust in that

higher power? Please take a deep breath and know you are not alone. In

times of weakness we are made strong through the power of God. There

are many people praying for you, and for your mom. May you be comforted

in knowing that even though I don't tell you every moment of every day,

you are in my prayers each and every moment. There is definately power

in prayer...my dad's life was testimony of that.

Wishing I could hug you in person! Saying multitudes of prayers and

keeping you close in my heart...

Sandie

Des Moines, IA

[Guest guest]

Shirley,

Don't beat yourself up for your feelings. This is one of the most demanding

jobs. I know the stress and strain you are under.

I would always prayer to God to make things better. I now believe that he

was telling me that it was time to place Mom in a NH. As devastating as it

was to do, it had to be done. Not only for myself, but for my Mom.

There isn't a day that doesn't go by that I don't wish I could still have my

Mom here with me. I had those thoughts like you that some times it seemed

like things weren't that bad. But the reality was that it was beyond me to

care for Mom single handedly any longer.

You can't function without proper sleep. The demands of caring for our LOs

requires a well rested and nourished caregiver. Even though Mom is in a NH

now, I am still her caregiver. I now have the help of the NH staff to make

my

part easier.

Take care of yourself.

Mariea

[Guest guest]

Shirley

Loved the " prayer " you sent. Thank you for sharing it with us...it

makes sense.

Sandie

[Guest guest]

Shirley

Loved the " prayer " you sent. Thank you for sharing it with us...it

makes sense.

Sandie