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Re: RE: new member my mother has LBD and Im struggling with decisions

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I truly feel for ya, my name is barb, my mother was hospitalized the month of

dec., listen what my family found out , these meds dont get out of your system

overnight, some of the meds my mother was on , will take up to 19 weeks to get

out of her system, thank God we caught this before it was to late, she was on

her Bad meds for only 3 days , the test they did to determine LBD was to write

on paper the time 1:45, instead of making two hands going to 1 the other going

to 9, she wrote 1 on the one, and wrote 45 on the nine.  shes going to the new

neuro dr. were anxious to see what he says. will keep you updated!  have a

blessed day. Again, Thank you god for giving us our mother back!!

To: LBDcaregivers

Sent: Tuesday, January 24, 2012 11:52 PM

Subject: RE: new member my mother has LBD and Im struggling with

decisions

 

Thank you all for replying to my post. I am going to try and respond to everyone

in this post by giving more information on my mother. By the way her name is

.

I wrote all of the medicines she has taken in caps to try and help out. Also I

mention at the bottom that she didn't have a UTI or any other infections blood

and urtine tests could find.

Originally she was put on ARICEPT for the dementia and maybe 2 years later they

added NAMENDA to it. She has a very hard time with following directions, as if

she does not know what you are telling her to do. She also struggles with

telling you what she is thinking. She will start to say something and its gone.

She needed help with dressing, bathing, grooming, she could not prepare any

food, couldn't work a microwave, phone or tv. She could however walk just fine,

go to the bathroom, and feed herself. She started becoming very paranoid and

didn't want to leave her room because she was scared someone was going to steal

her things. She was very attached to petty things like ink pens, rubber bands,

and pennies. None the less they were hers. My oldest son was the main suspect

and she would go in his room in the middle of the night and look around in the

dark, quiet freighting for him. We were seeing a neurologist and she decided to

try a low dose of

SERIQUEL. This seemed to ease her paranoia for a while but we ended up having

to increase her dose because it stopped working. I told myself that I would not

put her in a nursing home until either she didn't know the difference or she was

not able to go to the bathroom by her self. Well in January of 2010 she started

having problems getting to the bathroom in time so I knew what I had to do. I

found a wonderful place for her and I love everyone there and so did she for a

while.

So when she went to the nursing home she was taking ARICEPT, NAMENDA and

SERIQUEL. After about 5 months the paranoia came back and she thought the other

residents were stealing from her. She even thought they were taking the buttons

off her sweaters :( They started giving her LORAZEPAM for anxiety as needed.

This didn't seem to be working and the took her off SERIQUEL and tried

RISPERDOL. This only lasted a day or so because of the EPS that it caused. They

let that clear out of her system and tried GEODON. Again same reaction. They let

that clear and tried ABILIFY. Same thing. After the reactions she was getting

and the symptoms she has they decided it was LBD. The then tried DEPAKOTE and

CELEXA. DEPAKOTE because it can be a mood stabilizer and the CELEXA for the

depressions she was having. Using these two together worked. I was so happy and

so was she no more paranoia :) She still had all of her other symptoms but at

least she was happy. I was even able

to bring her home for Thanksgiving and she had a good time.

A few weeks before Christmas she talked about a friend she had met, it was a

lady and she was very nice. She said she made her feel safe. I asked if I could

meet her and she said probably not. I asked some other questions about this lady

and couldn't get much out of her. I figured out that this lady was not real. But

that was ok because she made her happy and said she said the lady was like an

angle so I played along. Two days later things turned for the worst. The angle

was gone and now there were vampires, werewolves, and gargoyles. I went to visit

on Christmas and it was awful. Almost like she was living in another world she

was scared and it reminded me of what I would think hell would be like seeing it

through my moms eyes. She was not acting out or causing problems she just sits

there and rambles about something I don't know what and makes possessed noises.

It is really hard to explain. The week following Christmas she added men

stealing babies to

the mix but couldn't tell me why these men were taking the babies. She just

kept repeating it and telling me to be careful of my kids. She then started to

refuse to eat, drink, or take her meds (ARICEPT, NAMENDA, DEPAKOTE, CELEXA) and

she became very combative when the CNAs would try to get her to go to the

bathroom or take a shower. They tried SERIQUEL again but it made no difference.

They decided she needed to go to a local behavioral center so she could be seen

by a psychiatrist on a daily basis. The one at the nursing home only came once a

week.

In order to got the behavioral center she had to go to the hospital to get

medically cleared. She ended up staying there a week during new years and she

was fine. They tested her blood for everything and her urine as well. No UTI no

other problems either. She has always been very healthy. They did end up putting

in a Foley because she had urinary retention?? While she was in the hospital

they were giving her ZYPREXA, BENEDRYL(to counter act the affects from ZYPREXA)

and ATIVAN By the 5th day I noticed the lean (rigid) and told them to stop the

ZYPREXA because it was causing the EPS. They did as I requested. Keep in mind my

mother was walking when she went to the hospital but sometime while she was

there she seemed to become cripple. She was so stiff she could no longer walk

and didn't have control of her hand in order to feed herself. She was still

having hallucinations, delusions, and combativeness while she was in the

hospital, that is while she was

awake the meds made her pretty sleepy.

Once at the behavioral center they began giving her COGENTIN to try and loosen

her up. They also took her off of everything except the ARICEPT. So she really

became psychotic. Eventually she was sitting up right and they began PT to get

her walking again. Good news she is now walking with assistance. She still can

not feed herself though. When talking to me she get a few real words out and

then begins rambling in somewhat of baby talk. She still mentions the men

stealing babies, vampires, werewolves, and gargoyles. She rambles the whole hour

that I am allowed to visit, its none stop. If I try to interrupt her she gets

made and tells me to shut up. I cant get into her world because I have not idea

what she is talking about and she is not capable of telling me. I just know she

is very scared and unhappy. Once they got rid of the EPS with the COGENTIN we

decided to try the last antipsychotic they felt would help. CLOZARIL, it is

supposed to be the one least

likely to cause EPS however it could cause a lot of other bad side affects.

This is why they waited to try it last. 5 days into taking CLOZARIL the EPS

started again but I did notice the psychotic behavior had improved slightly. The

started her on a low dose of the CLOZARIL so they couldn't try lowering it so

they took her off of it.

This is where the ECT is coming in. She isn't causing any problems and is eating

again however I can't stand to see her living in the scary world she lives in. I

asked what other options there was since she can not take meds to help. They

said there was ECT and told me about it. They said to do some research about it

and let them know if that was something I wanted to try. They did not try and

push it on me. The psychiatrist said if I decide to go that route she would need

to then be evaluated by the doc that performs the procedure to determine if she

is a candidate for it. She may not be due to the dementia but I won't know until

I say go forward with it.

I don't want her to be scared anymore it is heartbreaking. Knowing that there is

a possible way to help her and not trying it is hard for me. But making her

worse would be devastating as well. This is why I am torn.

As for me all of our family lives out of state so it is pretty much just me

dealing with this. I have some support from my brother and aunt but it is via

phone and it is pretty much me just filling them in on how she is doing. I have

my boyfriend who helps with the kids, thank god. And a couple of good friends I

can vent to but they have know clue what its like.

Note: As I was writing this I looked up LORAZEPAM for the spelling and realized

it is ATIVAN. My heart dropped since reading some of your comments of it

negative affects on LBD. Maybe this is why things got so bad, she's been taking

it the whole time (as needed) and full time in the hospital stay recently.

Thank you all again for taking the time to read this I know it was a lot.

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Share on other sites

I truly feel for ya, my name is barb, my mother was hospitalized the month of

dec., listen what my family found out , these meds dont get out of your system

overnight, some of the meds my mother was on , will take up to 19 weeks to get

out of her system, thank God we caught this before it was to late, she was on

her Bad meds for only 3 days , the test they did to determine LBD was to write

on paper the time 1:45, instead of making two hands going to 1 the other going

to 9, she wrote 1 on the one, and wrote 45 on the nine.  shes going to the new

neuro dr. were anxious to see what he says. will keep you updated!  have a

blessed day. Again, Thank you god for giving us our mother back!!

To: LBDcaregivers

Sent: Tuesday, January 24, 2012 11:52 PM

Subject: RE: new member my mother has LBD and Im struggling with

decisions

 

Thank you all for replying to my post. I am going to try and respond to everyone

in this post by giving more information on my mother. By the way her name is

.

I wrote all of the medicines she has taken in caps to try and help out. Also I

mention at the bottom that she didn't have a UTI or any other infections blood

and urtine tests could find.

Originally she was put on ARICEPT for the dementia and maybe 2 years later they

added NAMENDA to it. She has a very hard time with following directions, as if

she does not know what you are telling her to do. She also struggles with

telling you what she is thinking. She will start to say something and its gone.

She needed help with dressing, bathing, grooming, she could not prepare any

food, couldn't work a microwave, phone or tv. She could however walk just fine,

go to the bathroom, and feed herself. She started becoming very paranoid and

didn't want to leave her room because she was scared someone was going to steal

her things. She was very attached to petty things like ink pens, rubber bands,

and pennies. None the less they were hers. My oldest son was the main suspect

and she would go in his room in the middle of the night and look around in the

dark, quiet freighting for him. We were seeing a neurologist and she decided to

try a low dose of

SERIQUEL. This seemed to ease her paranoia for a while but we ended up having

to increase her dose because it stopped working. I told myself that I would not

put her in a nursing home until either she didn't know the difference or she was

not able to go to the bathroom by her self. Well in January of 2010 she started

having problems getting to the bathroom in time so I knew what I had to do. I

found a wonderful place for her and I love everyone there and so did she for a

while.

So when she went to the nursing home she was taking ARICEPT, NAMENDA and

SERIQUEL. After about 5 months the paranoia came back and she thought the other

residents were stealing from her. She even thought they were taking the buttons

off her sweaters :( They started giving her LORAZEPAM for anxiety as needed.

This didn't seem to be working and the took her off SERIQUEL and tried

RISPERDOL. This only lasted a day or so because of the EPS that it caused. They

let that clear out of her system and tried GEODON. Again same reaction. They let

that clear and tried ABILIFY. Same thing. After the reactions she was getting

and the symptoms she has they decided it was LBD. The then tried DEPAKOTE and

CELEXA. DEPAKOTE because it can be a mood stabilizer and the CELEXA for the

depressions she was having. Using these two together worked. I was so happy and

so was she no more paranoia :) She still had all of her other symptoms but at

least she was happy. I was even able

to bring her home for Thanksgiving and she had a good time.

A few weeks before Christmas she talked about a friend she had met, it was a

lady and she was very nice. She said she made her feel safe. I asked if I could

meet her and she said probably not. I asked some other questions about this lady

and couldn't get much out of her. I figured out that this lady was not real. But

that was ok because she made her happy and said she said the lady was like an

angle so I played along. Two days later things turned for the worst. The angle

was gone and now there were vampires, werewolves, and gargoyles. I went to visit

on Christmas and it was awful. Almost like she was living in another world she

was scared and it reminded me of what I would think hell would be like seeing it

through my moms eyes. She was not acting out or causing problems she just sits

there and rambles about something I don't know what and makes possessed noises.

It is really hard to explain. The week following Christmas she added men

stealing babies to

the mix but couldn't tell me why these men were taking the babies. She just

kept repeating it and telling me to be careful of my kids. She then started to

refuse to eat, drink, or take her meds (ARICEPT, NAMENDA, DEPAKOTE, CELEXA) and

she became very combative when the CNAs would try to get her to go to the

bathroom or take a shower. They tried SERIQUEL again but it made no difference.

They decided she needed to go to a local behavioral center so she could be seen

by a psychiatrist on a daily basis. The one at the nursing home only came once a

week.

In order to got the behavioral center she had to go to the hospital to get

medically cleared. She ended up staying there a week during new years and she

was fine. They tested her blood for everything and her urine as well. No UTI no

other problems either. She has always been very healthy. They did end up putting

in a Foley because she had urinary retention?? While she was in the hospital

they were giving her ZYPREXA, BENEDRYL(to counter act the affects from ZYPREXA)

and ATIVAN By the 5th day I noticed the lean (rigid) and told them to stop the

ZYPREXA because it was causing the EPS. They did as I requested. Keep in mind my

mother was walking when she went to the hospital but sometime while she was

there she seemed to become cripple. She was so stiff she could no longer walk

and didn't have control of her hand in order to feed herself. She was still

having hallucinations, delusions, and combativeness while she was in the

hospital, that is while she was

awake the meds made her pretty sleepy.

Once at the behavioral center they began giving her COGENTIN to try and loosen

her up. They also took her off of everything except the ARICEPT. So she really

became psychotic. Eventually she was sitting up right and they began PT to get

her walking again. Good news she is now walking with assistance. She still can

not feed herself though. When talking to me she get a few real words out and

then begins rambling in somewhat of baby talk. She still mentions the men

stealing babies, vampires, werewolves, and gargoyles. She rambles the whole hour

that I am allowed to visit, its none stop. If I try to interrupt her she gets

made and tells me to shut up. I cant get into her world because I have not idea

what she is talking about and she is not capable of telling me. I just know she

is very scared and unhappy. Once they got rid of the EPS with the COGENTIN we

decided to try the last antipsychotic they felt would help. CLOZARIL, it is

supposed to be the one least

likely to cause EPS however it could cause a lot of other bad side affects.

This is why they waited to try it last. 5 days into taking CLOZARIL the EPS

started again but I did notice the psychotic behavior had improved slightly. The

started her on a low dose of the CLOZARIL so they couldn't try lowering it so

they took her off of it.

This is where the ECT is coming in. She isn't causing any problems and is eating

again however I can't stand to see her living in the scary world she lives in. I

asked what other options there was since she can not take meds to help. They

said there was ECT and told me about it. They said to do some research about it

and let them know if that was something I wanted to try. They did not try and

push it on me. The psychiatrist said if I decide to go that route she would need

to then be evaluated by the doc that performs the procedure to determine if she

is a candidate for it. She may not be due to the dementia but I won't know until

I say go forward with it.

I don't want her to be scared anymore it is heartbreaking. Knowing that there is

a possible way to help her and not trying it is hard for me. But making her

worse would be devastating as well. This is why I am torn.

As for me all of our family lives out of state so it is pretty much just me

dealing with this. I have some support from my brother and aunt but it is via

phone and it is pretty much me just filling them in on how she is doing. I have

my boyfriend who helps with the kids, thank god. And a couple of good friends I

can vent to but they have know clue what its like.

Note: As I was writing this I looked up LORAZEPAM for the spelling and realized

it is ATIVAN. My heart dropped since reading some of your comments of it

negative affects on LBD. Maybe this is why things got so bad, she's been taking

it the whole time (as needed) and full time in the hospital stay recently.

Thank you all again for taking the time to read this I know it was a lot.

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Share on other sites

I truly feel for ya, my name is barb, my mother was hospitalized the month of

dec., listen what my family found out , these meds dont get out of your system

overnight, some of the meds my mother was on , will take up to 19 weeks to get

out of her system, thank God we caught this before it was to late, she was on

her Bad meds for only 3 days , the test they did to determine LBD was to write

on paper the time 1:45, instead of making two hands going to 1 the other going

to 9, she wrote 1 on the one, and wrote 45 on the nine.  shes going to the new

neuro dr. were anxious to see what he says. will keep you updated!  have a

blessed day. Again, Thank you god for giving us our mother back!!

To: LBDcaregivers

Sent: Tuesday, January 24, 2012 11:52 PM

Subject: RE: new member my mother has LBD and Im struggling with

decisions

 

Thank you all for replying to my post. I am going to try and respond to everyone

in this post by giving more information on my mother. By the way her name is

.

I wrote all of the medicines she has taken in caps to try and help out. Also I

mention at the bottom that she didn't have a UTI or any other infections blood

and urtine tests could find.

Originally she was put on ARICEPT for the dementia and maybe 2 years later they

added NAMENDA to it. She has a very hard time with following directions, as if

she does not know what you are telling her to do. She also struggles with

telling you what she is thinking. She will start to say something and its gone.

She needed help with dressing, bathing, grooming, she could not prepare any

food, couldn't work a microwave, phone or tv. She could however walk just fine,

go to the bathroom, and feed herself. She started becoming very paranoid and

didn't want to leave her room because she was scared someone was going to steal

her things. She was very attached to petty things like ink pens, rubber bands,

and pennies. None the less they were hers. My oldest son was the main suspect

and she would go in his room in the middle of the night and look around in the

dark, quiet freighting for him. We were seeing a neurologist and she decided to

try a low dose of

SERIQUEL. This seemed to ease her paranoia for a while but we ended up having

to increase her dose because it stopped working. I told myself that I would not

put her in a nursing home until either she didn't know the difference or she was

not able to go to the bathroom by her self. Well in January of 2010 she started

having problems getting to the bathroom in time so I knew what I had to do. I

found a wonderful place for her and I love everyone there and so did she for a

while.

So when she went to the nursing home she was taking ARICEPT, NAMENDA and

SERIQUEL. After about 5 months the paranoia came back and she thought the other

residents were stealing from her. She even thought they were taking the buttons

off her sweaters :( They started giving her LORAZEPAM for anxiety as needed.

This didn't seem to be working and the took her off SERIQUEL and tried

RISPERDOL. This only lasted a day or so because of the EPS that it caused. They

let that clear out of her system and tried GEODON. Again same reaction. They let

that clear and tried ABILIFY. Same thing. After the reactions she was getting

and the symptoms she has they decided it was LBD. The then tried DEPAKOTE and

CELEXA. DEPAKOTE because it can be a mood stabilizer and the CELEXA for the

depressions she was having. Using these two together worked. I was so happy and

so was she no more paranoia :) She still had all of her other symptoms but at

least she was happy. I was even able

to bring her home for Thanksgiving and she had a good time.

A few weeks before Christmas she talked about a friend she had met, it was a

lady and she was very nice. She said she made her feel safe. I asked if I could

meet her and she said probably not. I asked some other questions about this lady

and couldn't get much out of her. I figured out that this lady was not real. But

that was ok because she made her happy and said she said the lady was like an

angle so I played along. Two days later things turned for the worst. The angle

was gone and now there were vampires, werewolves, and gargoyles. I went to visit

on Christmas and it was awful. Almost like she was living in another world she

was scared and it reminded me of what I would think hell would be like seeing it

through my moms eyes. She was not acting out or causing problems she just sits

there and rambles about something I don't know what and makes possessed noises.

It is really hard to explain. The week following Christmas she added men

stealing babies to

the mix but couldn't tell me why these men were taking the babies. She just

kept repeating it and telling me to be careful of my kids. She then started to

refuse to eat, drink, or take her meds (ARICEPT, NAMENDA, DEPAKOTE, CELEXA) and

she became very combative when the CNAs would try to get her to go to the

bathroom or take a shower. They tried SERIQUEL again but it made no difference.

They decided she needed to go to a local behavioral center so she could be seen

by a psychiatrist on a daily basis. The one at the nursing home only came once a

week.

In order to got the behavioral center she had to go to the hospital to get

medically cleared. She ended up staying there a week during new years and she

was fine. They tested her blood for everything and her urine as well. No UTI no

other problems either. She has always been very healthy. They did end up putting

in a Foley because she had urinary retention?? While she was in the hospital

they were giving her ZYPREXA, BENEDRYL(to counter act the affects from ZYPREXA)

and ATIVAN By the 5th day I noticed the lean (rigid) and told them to stop the

ZYPREXA because it was causing the EPS. They did as I requested. Keep in mind my

mother was walking when she went to the hospital but sometime while she was

there she seemed to become cripple. She was so stiff she could no longer walk

and didn't have control of her hand in order to feed herself. She was still

having hallucinations, delusions, and combativeness while she was in the

hospital, that is while she was

awake the meds made her pretty sleepy.

Once at the behavioral center they began giving her COGENTIN to try and loosen

her up. They also took her off of everything except the ARICEPT. So she really

became psychotic. Eventually she was sitting up right and they began PT to get

her walking again. Good news she is now walking with assistance. She still can

not feed herself though. When talking to me she get a few real words out and

then begins rambling in somewhat of baby talk. She still mentions the men

stealing babies, vampires, werewolves, and gargoyles. She rambles the whole hour

that I am allowed to visit, its none stop. If I try to interrupt her she gets

made and tells me to shut up. I cant get into her world because I have not idea

what she is talking about and she is not capable of telling me. I just know she

is very scared and unhappy. Once they got rid of the EPS with the COGENTIN we

decided to try the last antipsychotic they felt would help. CLOZARIL, it is

supposed to be the one least

likely to cause EPS however it could cause a lot of other bad side affects.

This is why they waited to try it last. 5 days into taking CLOZARIL the EPS

started again but I did notice the psychotic behavior had improved slightly. The

started her on a low dose of the CLOZARIL so they couldn't try lowering it so

they took her off of it.

This is where the ECT is coming in. She isn't causing any problems and is eating

again however I can't stand to see her living in the scary world she lives in. I

asked what other options there was since she can not take meds to help. They

said there was ECT and told me about it. They said to do some research about it

and let them know if that was something I wanted to try. They did not try and

push it on me. The psychiatrist said if I decide to go that route she would need

to then be evaluated by the doc that performs the procedure to determine if she

is a candidate for it. She may not be due to the dementia but I won't know until

I say go forward with it.

I don't want her to be scared anymore it is heartbreaking. Knowing that there is

a possible way to help her and not trying it is hard for me. But making her

worse would be devastating as well. This is why I am torn.

As for me all of our family lives out of state so it is pretty much just me

dealing with this. I have some support from my brother and aunt but it is via

phone and it is pretty much me just filling them in on how she is doing. I have

my boyfriend who helps with the kids, thank god. And a couple of good friends I

can vent to but they have know clue what its like.

Note: As I was writing this I looked up LORAZEPAM for the spelling and realized

it is ATIVAN. My heart dropped since reading some of your comments of it

negative affects on LBD. Maybe this is why things got so bad, she's been taking

it the whole time (as needed) and full time in the hospital stay recently.

Thank you all again for taking the time to read this I know it was a lot.

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Share on other sites

Ativan isn't all bad. We use it for Mom when she gets extremely anxious.

When she is so anxious and confused that she is truly frightened, we will

use the Ativan. It works as a short-term sedative. She will become so calm

that she isn't very aware of her surroundings or the people around her.

But her dosage only lasts about a half-hour. That half-hour, though, give

her a chance to let go of her fears and worries and is enough to get her

back to as close to normal as she can be with LBD.

What I like about Ativan: it works quickly and the less than perfect

effects are short-term.

What I don't like about Ativan: It really knocks Mom out for that short

time. You have to time it carefully if you are having some sort of special

event.

As far as ECT is concerned, it sounds to me like it is a last-ditch and

desperate suggestion by your mom's medical team. After my sister's

experience, I would never recommend it for anyone and would discourage it

as much as possible. There is one exception: in the case of an extremely

violent, high risk, patient. And then I would never expect to get the

person back to who he/she was before the ECT. From what I've seen, it's

main purpose is to make the patient calm and manageable - not to restore

any mental capacity.

It sounds like you are working as hard as you can for your Mom, and for

your kids. The family members that are at a distance can contribute by

giving you a week or two off sometime, or by pooling their resources to

send you to a spa or on a trip somewhere special. They can do something

special for your kids as a thank you for putting up with the demands on

your time. My own family doesn't do much of that - they can't afford

much. But I wish they could and would. The point is that, even at a

distance, there are things they can do. They can commit to sending a card

every week. They can contribute to a clothing allowance or to a budget for

supplies like shampoos, body wash, toothpaste and brushes that your Mom

prefers and that would make things more bearable. They can contribute to

or send treats. They can email pictures that you can print out for your

Mom. If one of them is better at finances than the rest of you, he/she can

become the bill payer (with POA or a request to act as the agent of the

POA). There are lots of things they can do to make things easier for you

and for your mom. They just need to use their imagination to put

themselves in your shoes.

Kate

> **

>

>

> Thank you all for replying to my post. I am going to try and respond to

> everyone in this post by giving more information on my mother. By the way

> her name is .

>

> I wrote all of the medicines she has taken in caps to try and help out.

> Also I mention at the bottom that she didn't have a UTI or any other

> infections blood and urtine tests could find.

>

> Originally she was put on ARICEPT for the dementia and maybe 2 years later

> they added NAMENDA to it. She has a very hard time with following

> directions, as if she does not know what you are telling her to do. She

> also struggles with telling you what she is thinking. She will start to say

> something and its gone. She needed help with dressing, bathing, grooming,

> she could not prepare any food, couldn't work a microwave, phone or tv. She

> could however walk just fine, go to the bathroom, and feed herself. She

> started becoming very paranoid and didn't want to leave her room because

> she was scared someone was going to steal her things. She was very attached

> to petty things like ink pens, rubber bands, and pennies. None the less

> they were hers. My oldest son was the main suspect and she would go in his

> room in the middle of the night and look around in the dark, quiet

> freighting for him. We were seeing a neurologist and she decided to try a

> low dose of SERIQUEL. This seemed to ease her paranoia for a while but we

> ended up having to increase her dose because it stopped working. I told

> myself that I would not put her in a nursing home until either she didn't

> know the difference or she was not able to go to the bathroom by her self.

> Well in January of 2010 she started having problems getting to the bathroom

> in time so I knew what I had to do. I found a wonderful place for her and I

> love everyone there and so did she for a while.

> So when she went to the nursing home she was taking ARICEPT, NAMENDA and

> SERIQUEL. After about 5 months the paranoia came back and she thought the

> other residents were stealing from her. She even thought they were taking

> the buttons off her sweaters :( They started giving her LORAZEPAM for

> anxiety as needed. This didn't seem to be working and the took her off

> SERIQUEL and tried RISPERDOL. This only lasted a day or so because of the

> EPS that it caused. They let that clear out of her system and tried GEODON.

> Again same reaction. They let that clear and tried ABILIFY. Same thing.

> After the reactions she was getting and the symptoms she has they decided

> it was LBD. The then tried DEPAKOTE and CELEXA. DEPAKOTE because it can be

> a mood stabilizer and the CELEXA for the depressions she was having. Using

> these two together worked. I was so happy and so was she no more paranoia

> :) She still had all of her other symptoms but at least she was happy. I

> was even able to bring her home for Thanksgiving and she had a good time.

> A few weeks before Christmas she talked about a friend she had met, it was

> a lady and she was very nice. She said she made her feel safe. I asked if I

> could meet her and she said probably not. I asked some other questions

> about this lady and couldn't get much out of her. I figured out that this

> lady was not real. But that was ok because she made her happy and said she

> said the lady was like an angle so I played along. Two days later things

> turned for the worst. The angle was gone and now there were vampires,

> werewolves, and gargoyles. I went to visit on Christmas and it was awful.

> Almost like she was living in another world she was scared and it reminded

> me of what I would think hell would be like seeing it through my moms eyes.

> She was not acting out or causing problems she just sits there and rambles

> about something I don't know what and makes possessed noises. It is really

> hard to explain. The week following Christmas she added men stealing babies

> to the mix but couldn't tell me why these men were taking the babies. She

> just kept repeating it and telling me to be careful of my kids. She then

> started to refuse to eat, drink, or take her meds (ARICEPT, NAMENDA,

> DEPAKOTE, CELEXA) and she became very combative when the CNAs would try to

> get her to go to the bathroom or take a shower. They tried SERIQUEL again

> but it made no difference. They decided she needed to go to a local

> behavioral center so she could be seen by a psychiatrist on a daily basis.

> The one at the nursing home only came once a week.

> In order to got the behavioral center she had to go to the hospital to get

> medically cleared. She ended up staying there a week during new years and

> she was fine. They tested her blood for everything and her urine as well.

> No UTI no other problems either. She has always been very healthy. They did

> end up putting in a Foley because she had urinary retention?? While she was

> in the hospital they were giving her ZYPREXA, BENEDRYL(to counter act the

> affects from ZYPREXA) and ATIVAN By the 5th day I noticed the lean (rigid)

> and told them to stop the ZYPREXA because it was causing the EPS. They did

> as I requested. Keep in mind my mother was walking when she went to the

> hospital but sometime while she was there she seemed to become cripple. She

> was so stiff she could no longer walk and didn't have control of her hand

> in order to feed herself. She was still having hallucinations, delusions,

> and combativeness while she was in the hospital, that is while she was

> awake the meds made her pretty sleepy.

> Once at the behavioral center they began giving her COGENTIN to try and

> loosen her up. They also took her off of everything except the ARICEPT. So

> she really became psychotic. Eventually she was sitting up right and they

> began PT to get her walking again. Good news she is now walking with

> assistance. She still can not feed herself though. When talking to me she

> get a few real words out and then begins rambling in somewhat of baby talk.

> She still mentions the men stealing babies, vampires, werewolves, and

> gargoyles. She rambles the whole hour that I am allowed to visit, its none

> stop. If I try to interrupt her she gets made and tells me to shut up. I

> cant get into her world because I have not idea what she is talking about

> and she is not capable of telling me. I just know she is very scared and

> unhappy. Once they got rid of the EPS with the COGENTIN we decided to try

> the last antipsychotic they felt would help. CLOZARIL, it is supposed to be

> the one least likely to cause EPS however it could cause a lot of other bad

> side affects. This is why they waited to try it last. 5 days into taking

> CLOZARIL the EPS started again but I did notice the psychotic behavior had

> improved slightly. The started her on a low dose of the CLOZARIL so they

> couldn't try lowering it so they took her off of it.

> This is where the ECT is coming in. She isn't causing any problems and is

> eating again however I can't stand to see her living in the scary world she

> lives in. I asked what other options there was since she can not take meds

> to help. They said there was ECT and told me about it. They said to do some

> research about it and let them know if that was something I wanted to try.

> They did not try and push it on me. The psychiatrist said if I decide to go

> that route she would need to then be evaluated by the doc that performs the

> procedure to determine if she is a candidate for it. She may not be due to

> the dementia but I won't know until I say go forward with it.

> I don't want her to be scared anymore it is heartbreaking. Knowing that

> there is a possible way to help her and not trying it is hard for me. But

> making her worse would be devastating as well. This is why I am torn.

>

> As for me all of our family lives out of state so it is pretty much just

> me dealing with this. I have some support from my brother and aunt but it

> is via phone and it is pretty much me just filling them in on how she is

> doing. I have my boyfriend who helps with the kids, thank god. And a couple

> of good friends I can vent to but they have know clue what its like.

>

> Note: As I was writing this I looked up LORAZEPAM for the spelling and

> realized it is ATIVAN. My heart dropped since reading some of your comments

> of it negative affects on LBD. Maybe this is why things got so bad, she's

> been taking it the whole time (as needed) and full time in the hospital

> stay recently.

>

> Thank you all again for taking the time to read this I know it was a lot.

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.

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