Re: My Mom has gone downhill all the way

[Guest guest]

linda, my friend take a few deep breaths,  smell the roses and then blow out

the candles,  once,    again,   again 

slow your breathing down, it wll owrk out somehow, 

 

first of all, some lbd'ers do not do well on ativan or haldol.  some on the

other hand do ok , you may hvae to 'experimnet' to see which meds are best ofr

your mom.  adn be perpared for that to change too.  sigh so frustrating.

 

ok, you said something that made me read it over and over , as yourmom and my

dad are the only ones i have ever seen compalin about since 2004 when i ujointed

the group.  the eyse,   the eyes being stuck,  my dad swore for days/weeks

on end that someone was poking needles in his eyse and wold rub them until they

were red and watering, i wontder where that came from  how werid is that. 

 

take it one day at a time, i got really sleepy so i wll finish and add to his

tmoororw hugs sharno

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

Subject: My Mom has gone downhill all the way

To: LBDcaregivers

Date: Monday, May 3, 2010, 10:58 PM

 

I posted a while back about my Mom I'm here in Tx Dallas area, and my Mom has

Lewy Bodies. She was living at home with me, and hallucinating non stop, mostly

about getting married, inheriting millions, that sort of thing, sometimes scary

things about getting killed, etc. You may remember me, I haven't posted in a

while.

She was hallucinating and broke her foot a little over a month ago in the house,

we got locks for all the doors in the house where she couldn't get out. She gets

aggitated and angry when she couldn't get out.

One week ago, last Mon. I woke at 8:00 a.m. to find her in her bedroom floor

from a fall. I had given her Ativan the night before as she would not calm down

and wouldn't go to sleep and was highly aggitated from not getting to get out to

escape or call 911 for help!

I knew then it was time she had to go to the psch hosp. and home. Took her to

McKinney ER they did every test possible, nothing wrong with her, she was

totally out of it in the hospital as usual, she has not been able to hold a

normal conversation with me in weeks or months. They and I determined she needed

to go to the psch hospital to get her med's fixed and to a nursing home

permentaly as I can not deal with my Lupus, my sickness and her up 24 hours a

day hallucinating or trying to escape or being a danger any longer. It killed me

but it has to be done.

She was there for 7 days, and I found her a NH nearby me, and they were moving

her today at 1, by ambulance. Psch hosp. called me at 1 and said she fell and

they had to observe her for a few hours, but not hurt. I had gone to visit her

during visiting hours which were M - W - F - Sun 5:45 to 6:45. The 3 times I

visited her, she was wobbly, out of it, constant hallucinations, I brought this

upto the staff and they just notated it and not much else, but tell me the

pscyhatrist had upped her Seroquel from 50 mg. to 100 mg. then to 125mg. and

started her Zoloft 25 mg. Thats basically what they did.

I told them she was still hallucinating like crazy and getting worse!!!

She was moved anyway today around 6 I was at the NH and the lady wheeled her to

her room, and she looked at me and said, CALL KATIE RIGHT NOW I WANT TO TALK TO

KAYLEE TO SEE IF SHE HAS DROWN OR NOT!!! She has had this thing going for 2 or 3

days! is my daughter, Kaylee is my granddaughter. I called my daughter and

said, LET ME TALK TO KAYLEE NOW, GRANNY WANTS TO TALK TO HER. She talked to

Kaylee, her 5 yr. old great granddaughter and was a little bit satisfied she was

OK. Then she said, LETS GET OUT OF HER NOW. I said, well, this is your bed here

and maybe your tired and want to take a nap? She was furious with me, and told

me she was going to get out of there no matter what. And she was mad cause I

placed her in a NH and told me I could leave. I got her a pillow, and ordered

her evening meal, she was eating that but not talking to me. So now she hates

me, I know its her LWB that is talking not her! But still the expressions on her

face, the tone

of her voice being so mean and cold and hard, her frail body sitting there with

those things coming out, HURTS! She told me to bring her TV up there and clock!

She talks to her boyfriend through the TV. Her roommate is quiet and has issues,

and the room is like 100 degrees in there. Her roommate and family were

listening to all this going on. I always tell her I love her and did this time

and this was the first time she didn't tell me it back.

At 9:00 this evening, the young male nurse called with a hysterical tone to his

voice, saying my Mom stabbed him with a pencil, threw a bottle at him and is

running up and down the halls and trying to get out the front door. This place

is the only place I could find and they knew all about her LEWY BODY and they

have WANDER GUARD only. They were more than willing to get her into rehab and

then permanent home here. So he was panicked and I was panicked, he said, can

you come up here. I told him, I would but she was very mad at me and I had to

leave earlier. That it might not be a good idea. He said, can you talk to her,

so I talked to her and she was slurring her words. Oh yeah, he said he also just

gave her a HALDOL shot. She was telling me they or he or someone was trying to

rape her and she HAD TO GET OUT OF THERE!! Anxious as all get out. Said, they

put something in her eyes and were trying to kill her and she was leaving!! I

tried to talk to her

telling her did the nurse give you a shot? She said no. I said, well can you

please go to bed now? She didn't answer me and I said, it will be OK, just try

to be calm and get to bed or sleep. I told her I needed to talk to the nurse.

She said, ok, and gave me the phone, I apologised to him so sorry this was

happening. My son and his girlfriend just came from there at 10:00 and she was

in bed asleep now and he said a prayer with her.

So I am wondering now, since she is so so bad off with this diseae and I really

don't think any medicine is going to work on her. Will the NH take her back to

the psch hospital tomorrow or wait to see how she will do a day or two from now?

If any of you have any ideas? I am a nervous wreck. They already know she can't

come home to me, as she is a danger over here, and the police have been called,

she called 911 twice and the police don't want to come out here all the time,

and she took off down the street at 2 in the morning 2 weeks ago and my son

found her way down the block as someone had told her to come that way!! We have

a pool in the backyard and I have a horrible fear she might sneak out when

someone might leave the door open (7 people in my house), and she could drown.

So this house is not a safe place for her at all. When the psch hosp. told me

last week, her ins. wasn't paying for 3 days of her stay there, I said, she has

no money to pay all

that, she said, don't worry about it we'll write it off. I said, what if you

can't keep her for over 2 weeks or the NH won't keep her, then what? She said,

You don't even want to know!!! Scared me to death, and I said, what? She said,

TERRELL STATE HOSPITAL!!! I said what is so horrible? She said, we won't go

there now. So if this is my mother's last option, I will be very scared for her

I won't know what to do.

Thanks for listening and answering me back,

[Guest guest]

- I'm so sorry to hear about your mom! This is so tough!

FIRST you need to read this:

False Guilt

Passage from the book " No More Words " by Reeve Lindburgh (PS and as

reminded me of a quote Sandie on this board wrote: " We are only responsible for

the effort, not the result. " )

http://health.groups.yahoo.com/group/LBDcaregivers/message/51209?l=1

OK... that aside...

Does your mom have a Lewy-savvy doctor? she needs help with those meds they're

giving her... Many loved ones can't take Ativan and Haldol is a definite

No-No.... but some adjustments need to be made b/c your mom needs something for

those scary hallucinations...

Where do you live? I'll see if there's a Lewy Savvy doctor in your area...

>

> I posted a while back about my Mom I'm here in Tx Dallas area, and my Mom has

Lewy Bodies. She was living at home with me, and hallucinating non stop, mostly

about getting married, inheriting millions, that sort of thing, sometimes scary

things about getting killed, etc. You may remember me, I haven't posted in a

while.

>

> She was hallucinating and broke her foot a little over a month ago in the

house, we got locks for all the doors in the house where she couldn't get out.

She gets aggitated and angry when she couldn't get out.

>

> One week ago, last Mon. I woke at 8:00 a.m. to find her in her bedroom floor

from a fall. I had given her Ativan the night before as she would not calm down

and wouldn't go to sleep and was highly aggitated from not getting to get out to

escape or call 911 for help!

>

> I knew then it was time she had to go to the psch hosp. and home. Took her to

McKinney ER they did every test possible, nothing wrong with her, she was

totally out of it in the hospital as usual, she has not been able to hold a

normal conversation with me in weeks or months. They and I determined she

needed to go to the psch hospital to get her med's fixed and to a nursing home

permentaly as I can not deal with my Lupus, my sickness and her up 24 hours a

day hallucinating or trying to escape or being a danger any longer. It killed

me but it has to be done.

>

> She was there for 7 days, and I found her a NH nearby me, and they were moving

her today at 1, by ambulance. Psch hosp. called me at 1 and said she fell and

they had to observe her for a few hours, but not hurt. I had gone to visit her

during visiting hours which were M - W - F - Sun 5:45 to 6:45. The 3 times I

visited her, she was wobbly, out of it, constant hallucinations, I brought this

upto the staff and they just notated it and not much else, but tell me the

pscyhatrist had upped her Seroquel from 50 mg. to 100 mg. then to 125mg. and

started her Zoloft 25 mg. Thats basically what they did.

> I told them she was still hallucinating like crazy and getting worse!!!

>

> She was moved anyway today around 6 I was at the NH and the lady wheeled her

to her room, and she looked at me and said, CALL KATIE RIGHT NOW I WANT TO TALK

TO KAYLEE TO SEE IF SHE HAS DROWN OR NOT!!! She has had this thing going for 2

or 3 days! is my daughter, Kaylee is my granddaughter. I called my

daughter and said, LET ME TALK TO KAYLEE NOW, GRANNY WANTS TO TALK TO HER. She

talked to Kaylee, her 5 yr. old great granddaughter and was a little bit

satisfied she was OK. Then she said, LETS GET OUT OF HER NOW. I said, well,

this is your bed here and maybe your tired and want to take a nap? She was

furious with me, and told me she was going to get out of there no matter what.

And she was mad cause I placed her in a NH and told me I could leave. I got her

a pillow, and ordered her evening meal, she was eating that but not talking to

me. So now she hates me, I know its her LWB that is talking not her! But still

the expressions on her face, the tone of her voice being so mean and cold and

hard, her frail body sitting there with those things coming out, HURTS! She

told me to bring her TV up there and clock! She talks to her boyfriend through

the TV. Her roommate is quiet and has issues, and the room is like 100 degrees

in there. Her roommate and family were listening to all this going on. I

always tell her I love her and did this time and this was the first time she

didn't tell me it back.

>

> At 9:00 this evening, the young male nurse called with a hysterical tone to

his voice, saying my Mom stabbed him with a pencil, threw a bottle at him and is

running up and down the halls and trying to get out the front door. This place

is the only place I could find and they knew all about her LEWY BODY and they

have WANDER GUARD only. They were more than willing to get her into rehab and

then permanent home here. So he was panicked and I was panicked, he said, can

you come up here. I told him, I would but she was very mad at me and I had to

leave earlier. That it might not be a good idea. He said, can you talk to her,

so I talked to her and she was slurring her words. Oh yeah, he said he also

just gave her a HALDOL shot. She was telling me they or he or someone was

trying to rape her and she HAD TO GET OUT OF THERE!! Anxious as all get out.

Said, they put something in her eyes and were trying to kill her and she was

leaving!! I tried to talk to her telling her did the nurse give you a shot?

She said no. I said, well can you please go to bed now? She didn't answer me

and I said, it will be OK, just try to be calm and get to bed or sleep. I told

her I needed to talk to the nurse. She said, ok, and gave me the phone, I

apologised to him so sorry this was happening. My son and his girlfriend just

came from there at 10:00 and she was in bed asleep now and he said a prayer with

her.

>

> So I am wondering now, since she is so so bad off with this diseae and I

really don't think any medicine is going to work on her. Will the NH take her

back to the psch hospital tomorrow or wait to see how she will do a day or two

from now? If any of you have any ideas? I am a nervous wreck. They already

know she can't come home to me, as she is a danger over here, and the police

have been called, she called 911 twice and the police don't want to come out

here all the time, and she took off down the street at 2 in the morning 2 weeks

ago and my son found her way down the block as someone had told her to come that

way!! We have a pool in the backyard and I have a horrible fear she might sneak

out when someone might leave the door open (7 people in my house), and she could

drown. So this house is not a safe place for her at all. When the psch hosp.

told me last week, her ins. wasn't paying for 3 days of her stay there, I said,

she has no money to pay all that, she said, don't worry about it we'll write it

off. I said, what if you can't keep her for over 2 weeks or the NH won't keep

her, then what? She said, You don't even want to know!!! Scared me to death,

and I said, what? She said, TERRELL STATE HOSPITAL!!! I said what is so

horrible? She said, we won't go there now. So if this is my mother's last

option, I will be very scared for her I won't know what to do.

>

> Thanks for listening and answering me back,

>

>

[Guest guest]

, PLEASE tell them that your mom is allergic to Haldol and have them put

that on a bracelet on a wrist. Ativan doesn't work well for most people with

LBD either, but it does work for a few. If you see her get worse after that,

they'll need to stop that as well. I want to repeat what I posted recently from

a neurologist that is very familiar with LBD: " If someone is agitated, it is

important to determine if there are triggers for the agitation. The most common

ones are pain, bowel obstruction/constipation, urinary tract infections,

dehydration, people and situations. Remove the trigger and sometimes the

agitation goes away. " You mention that your mother has been complaining about

her eyes. Does she possibly have an infection or something else going on with

her eyes? Does she have a UTI? Is she constipated? Does she seem to be having

pain anywhere that she cannot describe? Since you are so close to her, you are

probably the only one who might be able to figure it out. Try your best to

touch her and see where something might hurt.

[Guest guest]

Hi and thanks for answering . My Mom is in a permanent NH now,

she is really gone downhill to the point I can't take care of her at home,

and I did have her a neurologist a new one while she was at home. At the NH

she is at as of one evening (where she tried to stab the nurse and threw a

bottle at him scarying the life out of him), the administrator told me

yesterday up there in the meeting and signing the paperwork to get her

admitted, that they do have a pschatrist that comes Wed. and Fri. that does know

about Lewy Bodies and he will be a big help to her. So we will see. I am

assuming that when the NH's get unruly patients that would of injured or

killed him if she had stabbed him in a wrong place, and she was going up and

down the halls and trying to get out of the home, then their only way to

get control of the situation since she refused pills by mouth, was to get her

and give her a shot of the Haldol. I am assuming " Haldol " is the medicine

of choice to " settle " or " calm " a patient down. I am no expert at this.

Sharon, thank you for answering, and this morning I'm rested from last

night since my son, Matt, went up to see " Granny " , after this incident. He

reported back to me, that Granny was in bed asleep or going to sleep and that

she was good by then and he said a prayer with her, and it was hot in her

room, so he went to CVS and bought her a fan for her room and some flowers

to make her happy. She was happy about that. He told me he will go see

her every night after he gets off work.

In a message dated 5/4/2010 5:04:29 A.M. Central Daylight Time,

octoryrose@... writes:

- I'm so sorry to hear about your mom! This is so tough!

FIRST you need to read this:

False Guilt

Passage from the book " No More Words " by Reeve Lindburgh (PS and as

reminded me of a quote Sandie on this board wrote: " We are only

responsible for the effort, not the result. " )

_http://health.http://healthhttp://heahttp://health.http://health.htt_

(http://health.groups.yahoo.com/group/LBDcaregivers/message/51209?l=1)

OK... that aside...

Does your mom have a Lewy-savvy doctor? she needs help with those meds

they're giving her... Many loved ones can't take Ativan and Haldol is a

definite No-No.... but some adjustments need to be made b/c your mom needs

something for those scary hallucinations.Does yo

Where do you live? I'll see if there's a Lewy Savvy doctor in your area...

>

> I posted a while back about my Mom I'm here in Tx Dallas area, and my

Mom has Lewy Bodies. She was living at home with me, and hallucinating non

stop, mostly about getting married, inheriting millions, that sort of thing,

sometimes scary things about getting killed, etc. You may remember me, I

haven't posted in a while.

>

> She was hallucinating and broke her foot a little over a month ago in

the house, we got locks for all the doors in the house where she couldn't get

out. She gets aggitated and angry when she couldn't get out.

>

> One week ago, last Mon. I woke at 8:00 a.m. to find her in her bedroom

floor from a fall. I had given her Ativan the night before as she would not

calm down and wouldn't go to sleep and was highly aggitated from not

getting to get out to escape or call 911 for help!

>

> I knew then it was time she had to go to the psch hosp. and home. Took

her to McKinney ER they did every test possible, nothing wrong with her, she

was totally out of it in the hospital as usual, she has not been able to

hold a normal conversation with me in weeks or months. They and I determined

she needed to go to the psch hospital to get her med's fixed and to a

nursing home permentaly as I can not deal with my Lupus, my sickness and her up

24 hours a day hallucinating or trying to escape or being a danger any

longer. It killed me but it has to be done.

>

> She was there for 7 days, and I found her a NH nearby me, and they were

moving her today at 1, by ambulance. Psch hosp. called me at 1 and said she

fell and they had to observe her for a few hours, but not hurt. I had gone

to visit her during visiting hours which were M - W - F - Sun 5:45 to

6:45. The 3 times I visited her, she was wobbly, out of it, constant

hallucinations, I brought this upto the staff and they just notated it and not

much

else, but tell me the pscyhatrist had upped her Seroquel from 50 mg. to 100

mg. then to 125mg. and started her Zoloft 25 mg. Thats basically what they

did.

> I told them she was still hallucinating like crazy and getting worse!!!

>

> She was moved anyway today around 6 I was at the NH and the lady wheeled

her to her room, and she looked at me and said, CALL KATIE RIGHT NOW I

WANT TO TALK TO KAYLEE TO SEE IF SHE HAS DROWN OR NOT!!! She has had this

thing going for 2 or 3 days! is my daughter, Kaylee is my granddaughter.

I called my daughter and said, LET ME TALK TO KAYLEE NOW, GRANNY WANTS TO

TALK TO HER. She talked to Kaylee, her 5 yr. old great granddaughter and was

a little bit satisfied she was OK. Then she said, LETS GET OUT OF HER NOW.

I said, well, this is your bed here and maybe your tired and want to take

a nap? She was furious with me, and told me she was going to get out of

there no matter what. And she was mad cause I placed her in a NH and told me I

could leave. I got her a pillow, and ordered her evening meal, she was

eating that but not talking to me. So now she hates me, I know its her LWB

that is talking not her! But still the expressions on her face, the tone of

her voice being so mean and cold and hard, her frail body sitting there with

those things coming out, HURTS! She told me to bring her TV up there and

clock! She talks to her boyfriend through the TV. Her roommate is quiet and

has issues, and the room is like 100 degrees in there. Her roommate and

family were listening to all this going on. I always tell her I love her and

did

this time and this was the first time she didn't tell me it back.

>

> At 9:00 this evening, the young male nurse called with a hysterical tone

to his voice, saying my Mom stabbed him with a pencil, threw a bottle at

him and is running up and down the halls and trying to get out the front

door. This place is the only place I could find and they knew all about her

LEWY BODY and they have WANDER GUARD only. They were more than willing to get

her into rehab and then permanent home here. So he was panicked and I was

panicked, he said, can you come up here. I told him, I would but she was

very mad at me and I had to leave earlier. That it might not be a good idea.

He said, can you talk to her, so I talked to her and she was slurring her

words. Oh yeah, he said he also just gave her a HALDOL shot. She was telling

me they or he or someone was trying to rape her and she HAD TO GET OUT OF

THERE!! Anxious as all get out. Said, they put something in her eyes and

were trying to kill her and she was leaving!! I tried to talk to her telling

he r did the nurse give you a shot? She said no. I said, well can you

please go to bed now? She didn't answer me and I said, it will be OK, just try

to be calm and get to bed or sleep. I told her I needed to talk to the

nurse. She said, ok, and gave me the phone, I apologised to him so sorry this

was happening. My son and his girlfriend just came from there at 10:00 and

she was in bed asleep now and he said a prayer with her.

>

> So I am wondering now, since she is so so bad off with this diseae and I

really don't think any medicine is going to work on her. Will the NH take

her back to the psch hospital tomorrow or wait to see how she will do a day

or two from now? If any of you have any ideas? I am a nervous wreck. They

already know she can't come home to me, as she is a danger over here, and

the police have been called, she called 911 twice and the police don't want

to come out here all the time, and she took off down the street at 2 in the

morning 2 weeks ago and my son found her way down the block as someone had

told her to come that way!! We have a pool in the backyard and I have a

horrible fear she might sneak out when someone might leave the door open (7

people in my house), and she could drown. So this house is not a safe place

for her at all. When the psch hosp. told me last week, her ins. wasn't

paying for 3 days of her stay there, I said, she has no money to pay all that,

she sa id, don't worry about it we'll write it off. I said, what if you

can't keep her for over 2 weeks or the NH won't keep her, then what? She said,

You don't even want to know!!! Scared me to death, and I said, what? She

said, TERRELL STATE HOSPITAL!!! I said what is so horrible? She said, we

won't go there now. So if this is my mother's last option, I will be very

scared for her I won't know what to do.

>

> Thanks for listening and answering me back,

>

>

[Guest guest]

linda, 

 

what a WONDRFUL son/grandson he is,   giving him a pat on teh shoulder from me

and an extra hug for you.   also if the aggression continues, have her

rechecked for uti recommned culturing it, this is frequent cause of unuusaul

aggressoin.  hugs. sharon

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

" We are only

responsible for the effort, not the result. " )

_http://health. http://healthhtt p://heahttp: //health. http://health. htt_

(http://health. groups.yahoo. com/group/ LBDcaregivers/ message/51209? l=1)

OK... that aside...

Does your mom have a Lewy-savvy doctor? she needs help with those meds

they're giving her... Many loved ones can't take Ativan and Haldol is a

definite No-No.... but some adjustments need to be made b/c your mom needs

something for those scary hallucinations. Does yo

Where do you live? I'll see if there's a Lewy Savvy doctor in your area...

>

> I posted a while back about my Mom I'm here in Tx Dallas area, and my

Mom has Lewy Bodies. She was living at home with me, and hallucinating non

stop, mostly about getting married, inheriting millions, that sort of thing,

sometimes scary things about getting killed, etc. You may remember me, I

haven't posted in a while.

>

> She was hallucinating and broke her foot a little over a month ago in

the house, we got locks for all the doors in the house where she couldn't get

out. She gets aggitated and angry when she couldn't get out.

>

> One week ago, last Mon. I woke at 8:00 a.m. to find her in her bedroom

floor from a fall. I had given her Ativan the night before as she would not

calm down and wouldn't go to sleep and was highly aggitated from not

getting to get out to escape or call 911 for help!

>

> I knew then it was time she had to go to the psch hosp. and home. Took

her to McKinney ER they did every test possible, nothing wrong with her, she

was totally out of it in the hospital as usual, she has not been able to

hold a normal conversation with me in weeks or months. They and I determined

she needed to go to the psch hospital to get her med's fixed and to a

nursing home permentaly as I can not deal with my Lupus, my sickness and her up

24 hours a day hallucinating or trying to escape or being a danger any

longer. It killed me but it has to be done.

>

> She was there for 7 days, and I found her a NH nearby me, and they were

moving her today at 1, by ambulance. Psch hosp. called me at 1 and said she

fell and they had to observe her for a few hours, but not hurt. I had gone

to visit her during visiting hours which were M - W - F - Sun 5:45 to

6:45. The 3 times I visited her, she was wobbly, out of it, constant

hallucinations, I brought this upto the staff and they just notated it and not

much

else, but tell me the pscyhatrist had upped her Seroquel from 50 mg. to 100

mg. then to 125mg. and started her Zoloft 25 mg. Thats basically what they

did.

> I told them she was still hallucinating like crazy and getting worse!!!

>

> She was moved anyway today around 6 I was at the NH and the lady wheeled

her to her room, and she looked at me and said, CALL KATIE RIGHT NOW I

WANT TO TALK TO KAYLEE TO SEE IF SHE HAS DROWN OR NOT!!! She has had this

thing going for 2 or 3 days! is my daughter, Kaylee is my granddaughter.

I called my daughter and said, LET ME TALK TO KAYLEE NOW, GRANNY WANTS TO

TALK TO HER. She talked to Kaylee, her 5 yr. old great granddaughter and was

a little bit satisfied she was OK. Then she said, LETS GET OUT OF HER NOW.

I said, well, this is your bed here and maybe your tired and want to take

a nap? She was furious with me, and told me she was going to get out of

there no matter what. And she was mad cause I placed her in a NH and told me I

could leave. I got her a pillow, and ordered her evening meal, she was

eating that but not talking to me. So now she hates me, I know its her LWB

that is talking not her! But still the expressions on her face, the tone of

her voice being so mean and cold and hard, her frail body sitting there with

those things coming out, HURTS! She told me to bring her TV up there and

clock! She talks to her boyfriend through the TV. Her roommate is quiet and

has issues, and the room is like 100 degrees in there. Her roommate and

family were listening to all this going on. I always tell her I love her and did

this time and this was the first time she didn't tell me it back.

>

> At 9:00 this evening, the young male nurse called with a hysterical tone

to his voice, saying my Mom stabbed him with a pencil, threw a bottle at

him and is running up and down the halls and trying to get out the front

door. This place is the only place I could find and they knew all about her

LEWY BODY and they have WANDER GUARD only. They were more than willing to get

her into rehab and then permanent home here. So he was panicked and I was

panicked, he said, can you come up here. I told him, I would but she was

very mad at me and I had to leave earlier. That it might not be a good idea.

He said, can you talk to her, so I talked to her and she was slurring her

words. Oh yeah, he said he also just gave her a HALDOL shot. She was telling

me they or he or someone was trying to rape her and she HAD TO GET OUT OF

THERE!! Anxious as all get out. Said, they put something in her eyes and

were trying to kill her and she was leaving!! I tried to talk to her telling

he r did the nurse give you a shot? She said no. I said, well can you

please go to bed now? She didn't answer me and I said, it will be OK, just try

to be calm and get to bed or sleep. I told her I needed to talk to the

nurse. She said, ok, and gave me the phone, I apologised to him so sorry this

was happening. My son and his girlfriend just came from there at 10:00 and

she was in bed asleep now and he said a prayer with her.

>

> So I am wondering now, since she is so so bad off with this diseae and I

really don't think any medicine is going to work on her. Will the NH take

her back to the psch hospital tomorrow or wait to see how she will do a day

or two from now? If any of you have any ideas? I am a nervous wreck. They

already know she can't come home to me, as she is a danger over here, and

the police have been called, she called 911 twice and the police don't want

to come out here all the time, and she took off down the street at 2 in the

morning 2 weeks ago and my son found her way down the block as someone had

told her to come that way!! We have a pool in the backyard and I have a

horrible fear she might sneak out when someone might leave the door open (7

people in my house), and she could drown. So this house is not a safe place

for her at all. When the psch hosp. told me last week, her ins. wasn't

paying for 3 days of her stay there, I said, she has no money to pay all that,

she sa id, don't worry about it we'll write it off. I said, what if you

can't keep her for over 2 weeks or the NH won't keep her, then what? She said,

You don't even want to know!!! Scared me to death, and I said, what? She

said, TERRELL STATE HOSPITAL!!! I said what is so horrible? She said, we

won't go there now. So if this is my mother's last option, I will be very

scared for her I won't know what to do.

>

> Thanks for listening and answering me back,

>

>

[Guest guest]

Oh yes, my son LOVES HIS GRANNY!!!

She had such a great day yesterday after that nightmare the night before.

She met the sweet little lady from Ireland and walked around with her. So

I think in time she will find friends and be OK. She will always

hallucinate and be in her " own " Lewy Body world, and I just pray the pschatrist

that comes today that will see her, can adjust her meds to help her.

Thank you!

Love,

[Guest guest]

Hi ,

Oh...I am so glad that your Mom is making friends...and even each talking their

own language they understand each other...there are some blessings along the

way. After your Mom adjusts to her new home and the doctor tweaks her meds to

the best level for her, I pray that she will remain calm for most of the time.

I know this is soooooo hard on you.

Hugs and prayers

Joan

>

> Oh yes, my son LOVES HIS GRANNY!!!

>

> She had such a great day yesterday after that nightmare the night before.

> She met the sweet little lady from Ireland and walked around with her. So

> I think in time she will find friends and be OK. She will always

> hallucinate and be in her " own " Lewy Body world, and I just pray the

pschatrist

> that comes today that will see her, can adjust her meds to help her.

>

> Thank you!

> Love,

>

>

>

[Guest guest]

<snip> give her a shot of the Haldol. I am assuming " Haldol " is the medicine of

choice to " settle " or " calm " a patient down. I am no expert at this. </snip>

Be very careful - most LBD'ers can't handle Haldol - in fact the warning is

listed on LBDA's Emergency Wallet Card.

Read here

Risperdal & Haldol

Message w/ collection of articles re: above

http://health.groups.yahoo.com/group/LBDcaregivers/message/70932

(PS - I know from the message above one of the links is broken... it's no longer

available - so take it if you want - the blurb about Haldol... it was a legit

article just MIA on the WWW)

LBD Medical Alert Wallet Card

This Medical Alert Wallet Card has been developed to help you quickly inform

Emergency Room medical professionals of important medication sensitivites in

LBD. Present this card any time you are hospitalized, require emergency medical

care, or meet with a new physician for the first time.

http://www.lbda.org/feature/1943/lbd-medical-alert-wallet-card.htm

> >

> > I posted a while back about my Mom I'm here in Tx Dallas area, and my

> Mom has Lewy Bodies. She was living at home with me, and hallucinating non

> stop, mostly about getting married, inheriting millions, that sort of thing,

> sometimes scary things about getting killed, etc. You may remember me, I

> haven't posted in a while.

> >

> > She was hallucinating and broke her foot a little over a month ago in

> the house, we got locks for all the doors in the house where she couldn't get

> out. She gets aggitated and angry when she couldn't get out.

> >

> > One week ago, last Mon. I woke at 8:00 a.m. to find her in her bedroom

> floor from a fall. I had given her Ativan the night before as she would not

> calm down and wouldn't go to sleep and was highly aggitated from not

> getting to get out to escape or call 911 for help!

> >

> > I knew then it was time she had to go to the psch hosp. and home. Took

> her to McKinney ER they did every test possible, nothing wrong with her, she

> was totally out of it in the hospital as usual, she has not been able to

> hold a normal conversation with me in weeks or months. They and I determined

> she needed to go to the psch hospital to get her med's fixed and to a

> nursing home permentaly as I can not deal with my Lupus, my sickness and her

up

> 24 hours a day hallucinating or trying to escape or being a danger any

> longer. It killed me but it has to be done.

> >

> > She was there for 7 days, and I found her a NH nearby me, and they were

> moving her today at 1, by ambulance. Psch hosp. called me at 1 and said she

> fell and they had to observe her for a few hours, but not hurt. I had gone

> to visit her during visiting hours which were M - W - F - Sun 5:45 to

> 6:45. The 3 times I visited her, she was wobbly, out of it, constant

> hallucinations, I brought this upto the staff and they just notated it and not

much

> else, but tell me the pscyhatrist had upped her Seroquel from 50 mg. to 100

> mg. then to 125mg. and started her Zoloft 25 mg. Thats basically what they

> did.

> > I told them she was still hallucinating like crazy and getting worse!!!

> >

> > She was moved anyway today around 6 I was at the NH and the lady wheeled

> her to her room, and she looked at me and said, CALL KATIE RIGHT NOW I

> WANT TO TALK TO KAYLEE TO SEE IF SHE HAS DROWN OR NOT!!! She has had this

> thing going for 2 or 3 days! is my daughter, Kaylee is my

granddaughter.

> I called my daughter and said, LET ME TALK TO KAYLEE NOW, GRANNY WANTS TO

> TALK TO HER. She talked to Kaylee, her 5 yr. old great granddaughter and was

> a little bit satisfied she was OK. Then she said, LETS GET OUT OF HER NOW.

> I said, well, this is your bed here and maybe your tired and want to take

> a nap? She was furious with me, and told me she was going to get out of

> there no matter what. And she was mad cause I placed her in a NH and told me

I

> could leave. I got her a pillow, and ordered her evening meal, she was

> eating that but not talking to me. So now she hates me, I know its her LWB

> that is talking not her! But still the expressions on her face, the tone of

> her voice being so mean and cold and hard, her frail body sitting there with

> those things coming out, HURTS! She told me to bring her TV up there and

> clock! She talks to her boyfriend through the TV. Her roommate is quiet and

> has issues, and the room is like 100 degrees in there. Her roommate and

> family were listening to all this going on. I always tell her I love her and

did

> this time and this was the first time she didn't tell me it back.

> >

> > At 9:00 this evening, the young male nurse called with a hysterical tone

> to his voice, saying my Mom stabbed him with a pencil, threw a bottle at

> him and is running up and down the halls and trying to get out the front

> door. This place is the only place I could find and they knew all about her

> LEWY BODY and they have WANDER GUARD only. They were more than willing to get

> her into rehab and then permanent home here. So he was panicked and I was

> panicked, he said, can you come up here. I told him, I would but she was

> very mad at me and I had to leave earlier. That it might not be a good idea.

> He said, can you talk to her, so I talked to her and she was slurring her

> words. Oh yeah, he said he also just gave her a HALDOL shot. She was telling

> me they or he or someone was trying to rape her and she HAD TO GET OUT OF

> THERE!! Anxious as all get out. Said, they put something in her eyes and

> were trying to kill her and she was leaving!! I tried to talk to her telling

> he r did the nurse give you a shot? She said no. I said, well can you

> please go to bed now? She didn't answer me and I said, it will be OK, just

try

> to be calm and get to bed or sleep. I told her I needed to talk to the

> nurse. She said, ok, and gave me the phone, I apologised to him so sorry this

> was happening. My son and his girlfriend just came from there at 10:00 and

> she was in bed asleep now and he said a prayer with her.

> >

> > So I am wondering now, since she is so so bad off with this diseae and I

> really don't think any medicine is going to work on her. Will the NH take

> her back to the psch hospital tomorrow or wait to see how she will do a day

> or two from now? If any of you have any ideas? I am a nervous wreck. They

> already know she can't come home to me, as she is a danger over here, and

> the police have been called, she called 911 twice and the police don't want

> to come out here all the time, and she took off down the street at 2 in the

> morning 2 weeks ago and my son found her way down the block as someone had

> told her to come that way!! We have a pool in the backyard and I have a

> horrible fear she might sneak out when someone might leave the door open (7

> people in my house), and she could drown. So this house is not a safe place

> for her at all. When the psch hosp. told me last week, her ins. wasn't

> paying for 3 days of her stay there, I said, she has no money to pay all that,

> she sa id, don't worry about it we'll write it off. I said, what if you

> can't keep her for over 2 weeks or the NH won't keep her, then what? She

said,

> You don't even want to know!!! Scared me to death, and I said, what? She

> said, TERRELL STATE HOSPITAL!!! I said what is so horrible? She said, we

> won't go there now. So if this is my mother's last option, I will be very

> scared for her I won't know what to do.

> >

> > Thanks for listening and answering me back,

> >

> >

>

>

>

>

>

>