Medication for Mom

[Guest guest]

My Mom started having serious problems with LBD symptoms after a knee

replacement surgery at age 86. Until then, she lived alone and was able to take

care of herself. I realized after other procedures that required that she be

put to sleep, that it was the anesthesia that caused her to be really off

mentally for months afterwards.

We kept her for two years and she has been in a NH for just over a year now.

She has 9 children, but I am her main caregiver.

My question for the group is about Medication. I feel like I have experimented

(based on Doctors' advice) with Mom by trying so many different drugs (for

sleeping, anxiety, depression, memory, psychosis, etc.). The only drug she is

taking now is 1/2 mg. of Ativan, morning and night. That seems to help with her

extreme anxiety. All other drugs had horrible effects on her. In fact, many of

them caused her to injure herself physically because she was so mentally messed

up. I am so afraid to " experiment " anymore.

However, her LBD is getting worse. She is having more confused periods. When

she is lucid, it is wonderful. She is happy and stays busy stringing beads on

string. (I tie the strings and put crosses on them and she is proud of her

necklaces.) During those lucid periods, people don't realize that she has

anything wrong with her.

I am just wondering if there is an anti-depressant that I could give her to keep

her from getting so upset over her confusion. I don't want to experiment

blindly, so I wanted the advice of this group. I have two brothers who are

REALLY against any more " experimenting " with drugs. But I have power of

attorney and want to make the decision based on what is best for Mom. Any

advice would be appreciated.

Thanks,

Barbara

[Guest guest]

By memory drugs, I assume you're referring to the cholinesterase

inhibitors (ChEIs), like Aricept, Razadyne and Exelon.

Give them another try. The side effects go away over time, and these

drugs deal with one of the most important biochemical issues in the

brains of people with DLB. The ChEIs can reduce confusion,

agitation, improve cognition and lift mood.

The key is to start with a tiny amount and increase the dose no more

frequently than every two weeks. If using Exelon, make sure every

dose is with 200-300 calories of food, with maybe 10 grams each of

protein and fat. This is a fair amount of food - not just a couple of

crackers. Aricept is less likely to cause problems if not taken with

food, but every drug in this class has the potential to cause nausea,

vomiting and diarrhea.

If the side effects are just intolerable, there's a patch form of

Exelon coming soon. It'll be better tolerated than the oral form -

more drug goes to the brain without affecting the gut.

E

[Guest guest]

Barbara,

Mom just didn't do well on any of the drugs. It was never worth it for me to go

though the adjusting time because it was so miserable. Yes, she was confused.

But she also had a pretty good idea when things weren't as they should be. So

we struggled along and did the best we could with day care to tire her out so

she would sleep.

Lots of ice cream because she would eat it. And I just let her " be happy!. "

She was in her late 80's and I just wanted what was best for her. Everyone has

different things to cope with. But I didn't want to shovel pills down her

throat that she didn't like anyway. And caused more problems than they were

worth.

Most people here do some sort of drugs and can give you a better idea. And part

of it will be what is best for your Mom. And that will be an individual issue.

I use to ask the MDs when they wanted to do drugs, " what is the goal. " Theirs

and mine often weren't the same. I just wanted her to be comfortable for the

rest of her life, what ever that was.

Hope this helps.

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.

Medication for Mom

My Mom started having serious problems with LBD symptoms after a knee

replacement surgery at age 86. Until then, she lived alone and was able to take

care of herself. I realized after other procedures that required that she be

put to sleep, that it was the anesthesia that caused her to be really off

mentally for months afterwards.

We kept her for two years and she has been in a NH for just over a year now.

She has 9 children, but I am her main caregiver.

My question for the group is about Medication. I feel like I have experimented

(based on Doctors' advice) with Mom by trying so many different drugs (for

sleeping, anxiety, depression, memory, psychosis, etc.). The only drug she is

taking now is 1/2 mg. of Ativan, morning and night. That seems to help with her

extreme anxiety. All other drugs had horrible effects on her. In fact, many of

them caused her to injure herself physically because she was so mentally messed

up. I am so afraid to " experiment " anymore.

However, her LBD is getting worse. She is having more confused periods. When

she is lucid, it is wonderful. She is happy and stays busy stringing beads on

string. (I tie the strings and put crosses on them and she is proud of her

necklaces.) During those lucid periods, people don't realize that she has

anything wrong with her.

I am just wondering if there is an anti-depressant that I could give her to keep

her from getting so upset over her confusion. I don't want to experiment

blindly, so I wanted the advice of this group. I have two brothers who are

REALLY against any more " experimenting " with drugs. But I have power of

attorney and want to make the decision based on what is best for Mom. Any

advice would be appreciated.

Thanks,

Barbara

[Guest guest]

Barbara, im not familiar with the drugs you mentioned, but i thought i would

comment on this anyway. My mom on aricept (5mg in the morninga nd 5mg in the

evening) and seroquel ( only at night 25 mg). Her initial reaction to aricept

was really bad, sometimes you may want to consider being a little patient until

the medication settles in her system , it too m my mom over a month to adjust to

aricept. my mom started 5mg and then we added another 5mg once her condition

stard to decline some more and her adjustment to increase in dosage was even

more dramatic.... i dont know how to explain the logic behind all, but i thought

i would share this with you.

Nina

Donna Mido wrote:

Barbara,

Mom just didn't do well on any of the drugs. It was never worth it for me to go

though the adjusting time because it was so miserable. Yes, she was confused.

But she also had a pretty good idea when things weren't as they should be. So we

struggled along and did the best we could with day care to tire her out so she

would sleep.

Lots of ice cream because she would eat it. And I just let her " be happy!. " She

was in her late 80's and I just wanted what was best for her. Everyone has

different things to cope with. But I didn't want to shovel pills down her throat

that she didn't like anyway. And caused more problems than they were worth.

Most people here do some sort of drugs and can give you a better idea. And part

of it will be what is best for your Mom. And that will be an individual issue. I

use to ask the MDs when they wanted to do drugs, " what is the goal. " Theirs and

mine often weren't the same. I just wanted her to be comfortable for the rest of

her life, what ever that was.

Hope this helps.

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.

Medication for Mom

My Mom started having serious problems with LBD symptoms after a knee

replacement surgery at age 86. Until then, she lived alone and was able to take

care of herself. I realized after other procedures that required that she be put

to sleep, that it was the anesthesia that caused her to be really off mentally

for months afterwards.

We kept her for two years and she has been in a NH for just over a year now. She

has 9 children, but I am her main caregiver.

My question for the group is about Medication. I feel like I have experimented

(based on Doctors' advice) with Mom by trying so many different drugs (for

sleeping, anxiety, depression, memory, psychosis, etc.). The only drug she is

taking now is 1/2 mg. of Ativan, morning and night. That seems to help with her

extreme anxiety. All other drugs had horrible effects on her. In fact, many of

them caused her to injure herself physically because she was so mentally messed

up. I am so afraid to " experiment " anymore.

However, her LBD is getting worse. She is having more confused periods. When she

is lucid, it is wonderful. She is happy and stays busy stringing beads on

string. (I tie the strings and put crosses on them and she is proud of her

necklaces.) During those lucid periods, people don't realize that she has

anything wrong with her.

I am just wondering if there is an anti-depressant that I could give her to keep

her from getting so upset over her confusion. I don't want to experiment

blindly, so I wanted the advice of this group. I have two brothers who are

REALLY against any more " experimenting " with drugs. But I have power of attorney

and want to make the decision based on what is best for Mom. Any advice would be

appreciated.

Thanks,

Barbara

[Guest guest]

Donna,

I may have been waiting on a response to justify my NOT putting Mom on

any more drugs, but your response made me feel best!

Since we tried Namenda for the second time a few months ago, I have

felt that I was never going to experiment again. But Mom is getting

so confused every morning. It has really been bad. I have been

feeling guilty thinking that there is a drug out there that would help

her. We also tried Exelon twice, which is what highly

recommends. It is just so hard to watch her suffer on the drugs,

knowing that I caused whatever effect it is having on her.

I even took her off the Ativan, because everyone in this group said it

was so bad. Well, that was horrible for her. She almost lost what

little mind she has left.

Mom will be 90 in a month. I feel like you did. I just want her to

be as comfortable as possible for the time she has left. I know that

there is no cure for LBD. It is just that people speak so highly

about what the drugs did for their LO. I wish I knew if they still

went through periods of extreme confusion while on those drugs.

Thanks so much for all of the responses.

Barbara

>

> Barbara,

>

> Mom just didn't do well on any of the drugs. It was never worth it

for me to go though the adjusting time because it was so miserable.

Yes, she was confused. But she also had a pretty good idea when

things weren't as they should be. So we struggled along and did the

best we could with day care to tire her out so she would sleep.

>

> Lots of ice cream because she would eat it. And I just let her " be

happy!. " She was in her late 80's and I just wanted what was best for

her. Everyone has different things to cope with. But I didn't want

to shovel pills down her throat that she didn't like anyway. And

caused more problems than they were worth.

>

> Most people here do some sort of drugs and can give you a better

idea. And part of it will be what is best for your Mom. And that

will be an individual issue. I use to ask the MDs when they wanted to

do drugs, " what is the goal. " Theirs and mine often weren't the same.

I just wanted her to be comfortable for the rest of her life, what

ever that was.

>

> Hope this helps.

>

> 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.

>

>

> Medication for Mom

>

> My Mom started having serious problems with LBD symptoms after a

knee replacement surgery at age 86. Until then, she lived alone and

was able to take care of herself. I realized after other procedures

that required that she be put to sleep, that it was the anesthesia

that caused her to be really off mentally for months afterwards.

>

> We kept her for two years and she has been in a NH for just over a

year now. She has 9 children, but I am her main caregiver.

>

> My question for the group is about Medication. I feel like I have

experimented (based on Doctors' advice) with Mom by trying so many

different drugs (for sleeping, anxiety, depression, memory, psychosis,

etc.). The only drug she is taking now is 1/2 mg. of Ativan, morning

and night. That seems to help with her extreme anxiety. All other

drugs had horrible effects on her. In fact, many of them caused her

to injure herself physically because she was so mentally messed up. I

am so afraid to " experiment " anymore.

>

> However, her LBD is getting worse. She is having more confused

periods. When she is lucid, it is wonderful. She is happy and stays

busy stringing beads on string. (I tie the strings and put crosses on

them and she is proud of her necklaces.) During those lucid periods,

people don't realize that she has anything wrong with her.

>

> I am just wondering if there is an anti-depressant that I could give

her to keep her from getting so upset over her confusion. I don't

want to experiment blindly, so I wanted the advice of this group. I

have two brothers who are REALLY against any more " experimenting " with

drugs. But I have power of attorney and want to make the decision

based on what is best for Mom. Any advice would be appreciated.

> Thanks,

> Barbara

>

>

[Guest guest]

Barbara.

You and I are looking at 87 or 90 year old people. That is certainly different

than 60 or 70 year old LOs. The last year I did go back and try Xanax that I

didn't know was a no-no. The MD had given it to me earlier and Mom couldn't

take a pill. So I got creative and cut the same pill (.50mg) in quarters and

gave it to her 4 times a day. It did real well and smoothed her anxiety out and

she didn't even know she was getting it. Other than her blood pressure and

thyroid that she had been taking for a long time, that was all.

I really didn't care if she was confused and talking funny. As long as she was

happy, I was ok. And with her, she had never liked pills or had taken any

except BP and Thyroid.

I really think she never had a hard time. I did! It is difficult to take care

of all I have to do, without being totally responsible for another human and the

decisions that need to be made. She was happy do what ever she did as long as

she had me. I think she eventually learned to trust I would just take care of

whatever need to be taken care of as best I could.

And Barb, it is all relative. For some, it is ok for their loved one to do a lot

of sleeping. That isn't what Mom did or liked doing. And I think we all have

to find what works best for our LO and that is all any of us can do.

If you don't want to try more drugs, that is fine. Even with the drugs others

will eventually get more and more confused. It is just how it is with this

disease. There are just to many factors that go into the decision. Age,

health, expectations of caregivers, problems with drugs, kind of dementia. It

goes on and on which goes back to, you need to do the best for your Mom that you

can do and you really do know best. You have been with her the longest. And

you know what you will tolerate and what your Mom can tolerate.

I think is correct and there are some meds that have been known to make

things worse FOR SOME PEOPLE. I stopped Aricept after 3 pills and called the MD

and said, " We can't do this. " Mom was never on a memory pill after those 3

pills.

I encourage you to do what " works " best for you. That is what I did.

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.

Medication for Mom

>

> My Mom started having serious problems with LBD symptoms after a

knee replacement surgery at age 86. Until then, she lived alone and

was able to take care of herself. I realized after other procedures

that required that she be put to sleep, that it was the anesthesia

that caused her to be really off mentally for months afterwards.

>

> We kept her for two years and she has been in a NH for just over a

year now. She has 9 children, but I am her main caregiver.

>

> My question for the group is about Medication. I feel like I have

experimented (based on Doctors' advice) with Mom by trying so many

different drugs (for sleeping, anxiety, depression, memory, psychosis,

etc.). The only drug she is taking now is 1/2 mg. of Ativan, morning

and night. That seems to help with her extreme anxiety. All other

drugs had horrible effects on her. In fact, many of them caused her

to injure herself physically because she was so mentally messed up. I

am so afraid to " experiment " anymore.

>

> However, her LBD is getting worse. She is having more confused

periods. When she is lucid, it is wonderful. She is happy and stays

busy stringing beads on string. (I tie the strings and put crosses on

them and she is proud of her necklaces.) During those lucid periods,

people don't realize that she has anything wrong with her.

>

> I am just wondering if there is an anti-depressant that I could give

her to keep her from getting so upset over her confusion. I don't

want to experiment blindly, so I wanted the advice of this group. I

have two brothers who are REALLY against any more " experimenting " with

drugs. But I have power of attorney and want to make the decision

based on what is best for Mom. Any advice would be appreciated.

> Thanks,

> Barbara

>

>

[Guest guest]

barbara,

every lbd patient is different, many respond wonderful to some of the meds, some

barely respond and others respond not at all, or violently, lbd is a roller

coaster ride, there is no stopping point or starting point just keeps going,

the only thing you can do is make the ride as easy as possible for you adn for

her, if ativan is working for her, then dont rock the boat, do whatever you

find is best,, there are no right or wrong answers, period, it is a guessing

game,. you do what you think is best and not try to second guess yourself. you

are a great daughter taking care of your mom, there are no rules iwth lbd we

just made them up as we go along. good luck and hugs, sharon