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barbara,

 

i wouldnt recommend suddenly stopping any medication, 

 

many meds thata are taken on a regular basis have in their instructions to never

stop suddenly or to wean off if necessary.  many mes are very dangerous to stop

suddenly ,  bp meds,  causing dangerous bp levels, anxiery meds, getting

ansiety out of control,  pain mangement getting apin out of manageable control

again, making it diffiult to do anyithing with contorlling hte pain,

 

i would think yes this could cause her change of metnal status and

hallucinations,   also she could have na infection of uti as lbd'ers tend to

get utis and the only way we reconginized is is the change in daddys' mood,

attutiude etc. 

i would definetly check on this and then state that no changes of medicatiaon

should be authoirzed without speicific consent of HER DOCTOR AND YOU . also have

her checked for a uti and possilby a blood draw to see if she does have an

infection. 

 

hugs. sharon

Subject: Re: stopping meds

To: LBDcaregivers

Date: Saturday, February 5, 2011, 4:35 PM

 

Hi Barbara,

My mom has had a bug or two while in care and they never stopped her meds. I’d

talk to the head nurse about this. I don’t think they should be making medical

decisions about your mom without consulting you or you dad. Best,

Courage

From: Barbara Austen

Sent: Saturday, February 05, 2011 5:29 PM

To: LBDcaregivers

Subject: stopping meds

I read nearly everything that comes across this list, and find it extremely

helpful, although I keep quiet most of the time. However, I have a question for

the collective wisdom of the group.

My mother (age 79) is in a " memory unit " as they call it, at a continuing care

center. There is a quarantine of the unit because of a gastrointestinal bug

going around. Mom has not had the reguritation and diarrhea associated with the

bug, but she has evidently complained of an upset stomach. From what she tells

me (and remember, she has LBD) they stopped her medications when she mentioned

her nausea. And surprise, today she scared the hell out of my father when she

started talking about people coming into her room and rearranging things and

doing strange things to her dolls (she is a doll collector). She has had this

type of hallucination before, but not recently. I am beginning th think that she

is acting " wacky " (as my father called it) because she was off her meds,

although I have not been able to confirm that with the nurses. Getting any

information from these folks is like pulling teeth. Anyway, she takes effexor,

sinimet, excelon, and seroquel.

My questions are these. When people get an intestinal bug, is it typical to

stop all meds?

Second, could the abrupt cessation of medication have brought on the

hallucations?

Thanks for all the help and comfort this group brings.

Barbara, daughter of Betsy

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Barbara,

Here's my thoughts on it. I cannot think of a reason they would stop your

mother's meds and I'd call and speak to the Floor RN or Nursing Station and

ask about this right away. I understand about pulling teeth so get some

mental pliers and be persistent.

Your mother COULD have a mild case of it and just have a temp (or not) and

nausea without the other extreme symptoms. It could also cause some bizarre

thinking. My mil had it twice from the senior living complex she lived in

and got the pneumonia from it as well the second time (sometimes goes along

with it). She was so loopy the second time around she barely remembers

anything except having to do a fecal sample (the things that stick in our

minds huh?) She was talking some strange stories though! She was in the

hospital for 6 days and then sent to rehab to recover and regain her

strength. I almost had to stage a sit in to get the fecal test ordered at

the hospital to verify if she had it or not but really glad I did because

she tested positive. Horrible stuff. Her place did not report as

required, but I didn't know this when I called the Public Health Nurse to

find out how family and caregiver and I might clean her apartment, her

wheelchair and the car we used to transport her to the ER and avoid getting

sick ourselves.

Hope you find some solid answers,

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Barbara Austen

Sent: Saturday, February 05, 2011 2:30 PM

To: LBDcaregivers

Subject: stopping meds

I read nearly everything that comes across this list, and find it extremely

helpful, although I keep quiet most of the time. However, I have a question

for

the collective wisdom of the group.

My mother (age 79) is in a " memory unit " as they call it, at a continuing

care

center. There is a quarantine of the unit because of a gastrointestinal bug

going around. Mom has not had the reguritation and diarrhea associated with

the

bug, but she has evidently complained of an upset stomach. From what she

tells

me (and remember, she has LBD) they stopped her medications when she

mentioned

her nausea. And surprise, today she scared the hell out of my father when

she

started talking about people coming into her room and rearranging things and

doing strange things to her dolls (she is a doll collector). She has had

this

type of hallucination before, but not recently. I am beginning th think that

she

is acting " wacky " (as my father called it) because she was off her meds,

although I have not been able to confirm that with the nurses. Getting any

information from these folks is like pulling teeth. Anyway, she takes

effexor,

sinimet, excelon, and seroquel.

My questions are these. When people get an intestinal bug, is it typical to

stop all meds?

Second, could the abrupt cessation of medication have brought on the

hallucations?

Thanks for all the help and comfort this group brings.

Barbara, daughter of Betsy

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Hi Barbara,

You have had some excellent advice, to which I could never cover

so well. The only thing that I could think of, of course, was when my

Don was near the end of his life his meds were stopped. I was told

they were useless at his stage in the disease.

I don't know how far along your Mother is, so it is presumptuous of

me to assume that she is in the same stage as my Don. But, if they

think that, then you should be told.

I am sorry for you and what you are going through.

Love a lot,

Imogene

In a message dated 2/6/2011 9:17:25 A.M. Central Standard Time,

barbara_austen@... writes:

Dear Courage, Dorothy and Sharon,

Thank you for responding to my question. It is SO helpful to have real

life

experiences to draw upon, which is why I contacted the list.

The nurse told me yesterday they were going to check Mom for a UTI, but of

course on the weekend at this place there is not doctor on site so the

sample

could not go to the lab. Seems screwy to me, but there you are. I also

have not

received a call back from the nurse (I left a message last night and again

this

morning) to confirm or deny the fact that her meds were stopped for

awhile.

According to Dad, Mom sounded " normal " this morning, so the crisis of

yesterday

has passed but the underlying cause has yet to be determined. I will keep

those

mental pliers handy to make sure I do get an answer.

Barbara

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Dear Courage, Dorothy and Sharon,

Thank you for responding to my question. It is SO helpful to have real life

experiences to draw upon, which is why I contacted the list.

The nurse told me yesterday they were going to check Mom for a UTI, but of

course on the weekend at this place there is not doctor on site so the sample

could not go to the lab. Seems screwy to me, but there you are. I also have not

received a call back from the nurse (I left a message last night and again this

morning) to confirm or deny the fact that her meds were stopped for awhile.

According to Dad, Mom sounded " normal " this morning, so the crisis of yesterday

has passed but the underlying cause has yet to be determined. I will keep those

mental pliers handy to make sure I do get an answer.

Barbara

________________________________

To: LBDcaregivers

Sent: Sat, February 5, 2011 5:35:12 PM

Subject: Re: stopping meds

Hi Barbara,

My mom has had a bug or two while in care and they never stopped her meds. 

I’d

talk to the head nurse about this.  I don’t think they should be making

medical

decisions about your mom without consulting you or you dad.  Best,

Courage

From: Barbara Austen

Sent: Saturday, February 05, 2011 5:29 PM

To: LBDcaregivers

Subject: stopping meds

 

I read nearly everything that  comes across this list, and find it extremely

helpful, although I keep quiet most of the time. However, I have a question for

the collective wisdom of the group.

My mother (age 79) is in a " memory unit " as they call it, at a continuing care

center. There is a quarantine of the unit because of a gastrointestinal bug

going around. Mom has not had the reguritation and diarrhea associated with the

bug, but she has evidently complained of an upset stomach. From what she tells

me (and remember, she has LBD) they stopped her medications when she mentioned

her nausea. And surprise, today she scared the hell out of my father when she

started talking about people coming into her room and rearranging things and

doing strange things to her dolls (she is a doll collector). She has had this

type of hallucination before, but not recently. I am beginning th think that she

is acting " wacky " (as my father called it) because she was off her meds,

although I have not been able to confirm that with the nurses. Getting any

information from these folks is like pulling teeth. Anyway, she takes effexor,

sinimet, excelon, and seroquel.

My questions are these.  When people get an intestinal bug, is it typical to

stop all meds?

Second, could the abrupt cessation of medication have brought on the

hallucations?

Thanks for all the help and comfort this group brings.

Barbara, daughter of Betsy

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Hello Barbara,

Reading your post I just had to reply back. I so wish I could

help you and I'm sure others can offer help.

What got me was when your mother told you that they

stopped her medicines, and u didn't know if it was true or

not. I had that same thing from my mother a week ago.

When I went to visit she had been " out of it " hallucinating,

drowsy, I can look in her EYES and see something is WRONG!

Just by looking in her eyes at times, they look distant, far

away for instance. She told me the gave her two doses of

her medicines that morning at different times. So I didn't

know whether to believe her or not. I don't trust this home

that much either. Its not a horrific home, and its always clean,

smells good, the staff are nice and good, my mother is almost

always clean clean. But there are times I have questions, and

I almost always ask them. But behind the scenes I wonder if

they give people dope medicine to put them to sleep. Anyway,

she just hadn't acted right at all when she told me about the

2 doses of medicine that morning. Same thing here, its like

pulling teeth to get any straight forward answers from them!

In fact, I was at the home Thursday, we have had a huge ice/snow

storm here, but my husband drove me up there 10 min. away, 5

mph., as she had very few clothes left and I do her laundry, so I

had to take her clothes, and I have not met her dr. in the 7 months

she's lived here and so I went to the desk and saw her night nurse

so asked him about the INCONTINENCE pill they were supposed to

have told the dr. about 2 weeks ago. He hem hawed around acting

dumb, and I saw what looked to be a dr. sitting at the desk and he

was Indian which I knew her drs. last name was indian name. Well,

I talked loud and clear and very plain spoken to nurse and I noticed

the dr. looking up at me with a wonder that who is she? Finally after

a few minutes of the nurse trying to find her file, and telling me

no they have not stopped her incontinence pill, I said WHY NOT?

that it had been almost 2 weeks and I want the DOCTORS PHONE

NUMBER to call him since he is only there on Thursdays and I have

never met him. Well, low and behold, the dr. was her dr. the nurse

told me, oh yeah, this is your mother's dr. Oh Really??? He knew

that was her dr. all the while, but hem hawed around to me. So

I told the dr. plain and clear that I belong to a LEWY BODY DEMENTIA

group and INCONTIENCE pills are a big NO NO that they can cause

more hallucinations and he agreed and said he is taking her off that

one. I went on to ask him about pain medicine she is on, ULTRAM,

and asked him if she would get addicted to it? He said, the way it

is in nursing homes, it doesn't matter if the patients DO GET HOOKED

or addicted to pain meds as they live there, they aren't going anywhere

and they have to keep them pain free so living in there is just fine.

I said, ok and went on. I really don't know what to think of that

statement, as I don't take pain med's only if my Lupus is out of control

horrible, which it can be several times a year, and I may have

one Hydrocodone, low low dose of 250 and then I never have another

one, I will also take Ibprofen 800 mg. one pill. I never take those

kind of pills but one only and for one day and then I won't take

another one for months. I just tend to not want to take these med's

but for others I know lots of people who take these and much much

more just to survive and I feel so sorry for ones out there who suffer

in so much pain they can't even function at all unless to take a pill

to get out of pain. I would too if I had to live in constant pain like

my mother does too.

Well enough chatting, and you hang in there, I'm in Texas where

are you from? Sounds like you are going through things I'm going

through with my Mom. My Mom did fall and break her arm in

the home 2 months ago and it has been horrible for her.

God bless!

in Texas

p.s. To answer your questions (I'm not a nurse or professional), just

see what goes on with my own mother day in day out at the home,

I believe if they took her off all her med's for even one day, it would

throw her for a loop, she would end up extremely whacky. And I

think with any new medicines added, it can throw them in a loop.

Just what I've experienced with my own precious mother who is

like a little girl most of the time now, bless her heart, I love her

so much! I leave there some days thinking its like seeing about

a daughter of mine instead of a mother, she is so vunerable in her

condition and at her age. God be with our loved ones! Amen!

I pray to God each and every day all through the day and especially

when I go up there and see her in this condition with broke arm,

lewy body, hallucinating, for God to keep her calm, God to keep

her safe, God to love her and be right next to her, and Jesus to

hold on tight to her each and every day, and especially when I'm

not up there watching her, asking her nurses questions, her aides

questions, helping to feed her, on and on.

I read nearly everything that comes across this list, and find it

extremely

helpful, although I keep quiet most of the time. However, I have a

question for

the collective wisdom of the group.

My mother (age 79) is in a " memory unit " as they call it, at a continuing

care

center. There is a quarantine of the unit because of a gastrointestinal

bug

going around. Mom has not had the reguritation and diarrhea associated

with the

bug, but she has evidently complained of an upset stomach. From what she

tells

me (and remember, she has LBD) they stopped her medications when she

mentioned

her nausea. And surprise, today she scared the hell out of my father when

she

started talking about people coming into her room and rearranging things

and

doing strange things to her dolls (she is a doll collector). She has had

this

type of hallucination before, but not recently. I am beginning th think

that she

is acting " wacky " (as my father called it) because she was off her meds,

although I have not been able to confirm that with the nurses. Getting any

information from these folks is like pulling teeth. Anyway, she takes

effexor,

sinimet, excelon, and seroquel.

My questions are these. When people get an intestinal bug, is it typical

to

stop all meds?

Second, could the abrupt cessation of medication have brought on the

hallucations?

Thanks for all the help and comfort this group brings.

Barbara, daughter of Betsy

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no problem and i knw for me i am standig next to you in spirit to give you teh

strength to be pushy to et what you need, hugs. sharon 

Subject: Re: stopping meds

To: LBDcaregivers

Date: Sunday, February 6, 2011, 9:17 AM

 

Dear Courage, Dorothy and Sharon,

Thank you for responding to my question. It is SO helpful to have real life

experiences to draw upon, which is why I contacted the list.

The nurse told me yesterday they were going to check Mom for a UTI, but of

course on the weekend at this place there is not doctor on site so the sample

could not go to the lab. Seems screwy to me, but there you are. I also have not

received a call back from the nurse (I left a message last night and again this

morning) to confirm or deny the fact that her meds were stopped for awhile.

According to Dad, Mom sounded " normal " this morning, so the crisis of yesterday

has passed but the underlying cause has yet to be determined. I will keep those

mental pliers handy to make sure I do get an answer.

Barbara

________________________________

To: LBDcaregivers

Sent: Sat, February 5, 2011 5:35:12 PM

Subject: Re: stopping meds

Hi Barbara,

My mom has had a bug or two while in care and they never stopped her meds. 

I’d

talk to the head nurse about this.  I don’t think they should be making

medical

decisions about your mom without consulting you or you dad.  Best,

Courage

From: Barbara Austen

Sent: Saturday, February 05, 2011 5:29 PM

To: LBDcaregivers

Subject: stopping meds

 

I read nearly everything that  comes across this list, and find it extremely

helpful, although I keep quiet most of the time. However, I have a question for

the collective wisdom of the group.

My mother (age 79) is in a " memory unit " as they call it, at a continuing care

center. There is a quarantine of the unit because of a gastrointestinal bug

going around. Mom has not had the reguritation and diarrhea associated with the

bug, but she has evidently complained of an upset stomach. From what she tells

me (and remember, she has LBD) they stopped her medications when she mentioned

her nausea. And surprise, today she scared the hell out of my father when she

started talking about people coming into her room and rearranging things and

doing strange things to her dolls (she is a doll collector). She has had this

type of hallucination before, but not recently. I am beginning th think that she

is acting " wacky " (as my father called it) because she was off her meds,

although I have not been able to confirm that with the nurses. Getting any

information from these folks is like pulling teeth. Anyway, she takes effexor,

sinimet, excelon, and seroquel.

My questions are these.  When people get an intestinal bug, is it typical to

stop all meds?

Second, could the abrupt cessation of medication have brought on the

hallucations?

Thanks for all the help and comfort this group brings.

Barbara, daughter of Betsy

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Dear ,

Yes, our situations are similar. Thank goodness my Mom hasn't broken her arm! I

cannot imagine the challenges that brings.

I still have no straight answer from the nurses, although I am expecting a call

this morning. There is no indication in her chart, so I am told, to indicate her

meds were stopped. It is so hard with Mom when she tells me something and I

cannot believe her. Usually I can tell if it is a hallucination, but not always.

Like she still insists she does not get her Activia every day, but last week I

saw one of the aides actually track her down to give it to her. That is why I

cannot trust the " no meds " statement. But it is still driving me crazy.

For the record, I live in snowy Connecticut. We have had more than six feet in

total over the course of the last month and a half. Thank goodness some melts in

between storms, but you should see the snow banks! My back and arm are very

tired from shoveling.

If I learn anything new about the medication situation, (like it has been

resolved) I will share that info later today.

Barbara

________________________________

To: LBDcaregivers

Sent: Sun, February 6, 2011 10:18:42 AM

Subject: Re: stopping meds

Hello Barbara,

Reading your post I just had to reply back.  I so wish I could

help you and I'm sure others can offer help. 

What got me was when your mother told you that  they

stopped her medicines, and u didn't know if it was  true or

not.  I had that same thing from my mother a  week ago. 

When I went to visit she had been " out of it "   hallucinating,

drowsy, I can look in her EYES and see something  is WRONG!

Just by looking in her eyes at times, they look  distant, far

away for instance.  She told me the gave her  two doses of

her medicines that morning at different  times.  So I didn't

know whether to believe her or not.  I don't  trust this home

that much either.  Its not a horrific home,  and its always clean,

smells good, the staff are nice and good, my  mother is almost

always clean clean.  But there are times I  have questions, and

I almost always ask them.  But behind the  scenes I wonder if

they give people dope medicine to put them to  sleep.  Anyway,

she just hadn't acted right at all when she told  me about the

2 doses of medicine that  morning.    Same thing here, its like

pulling teeth to get any straight forward answers  from them!

In fact, I was at the home Thursday, we have had a  huge ice/snow

storm here, but my husband drove me up there 10  min. away, 5

mph., as she had very few clothes left and I do  her laundry, so I

had to take her clothes, and I have not met her  dr. in the 7 months

she's lived here and so I went to the desk and saw  her night nurse

so asked him about the INCONTINENCE pill they were  supposed to

have told the dr. about 2 weeks ago.  He hem  hawed around acting

dumb, and I saw what looked to be a dr. sitting at  the desk and he

was Indian which I knew her drs. last name was  indian name.  Well,

I talked loud and clear and very plain spoken to  nurse and I noticed

the dr. looking up at me with a wonder that who is  she?  Finally after

a few minutes of the nurse trying to find her  file, and telling me

no they have not stopped her incontinence pill, I  said WHY NOT?

that it had been almost 2 weeks and I want the  DOCTORS PHONE

NUMBER to call him since he is only there on  Thursdays and I have

never met him.  Well, low and behold, the dr.  was her dr. the nurse

told me, oh yeah, this is your mother's dr.  Oh Really???  He knew

that was her dr. all the while, but hem hawed  around to me.  So

I told the dr. plain and clear that I belong to a  LEWY BODY DEMENTIA

group and INCONTIENCE pills are a big NO NO  that they can cause

more hallucinations and he agreed and said he is  taking her off that

one.  I went on to ask him about pain  medicine she is on, ULTRAM,

and asked him if she would get addicted to  it?  He said, the way it

is in nursing homes, it doesn't  matter if  the patients DO GET HOOKED

or addicted to pain meds as they live there, they  aren't going anywhere

and they have to keep them pain free so living in  there is just fine.

I said, ok and went on.  I really don't know  what to think of that

statement, as I don't take pain med's only if my  Lupus is out of control

horrible, which it can be several times a year,  and I may have

one Hydrocodone, low low dose of 250 and then I  never have another

one, I will also take Ibprofen 800 mg. one  pill.  I never take those

kind of pills but one only and for one day and  then I won't take

another one for months.  I just tend to not  want to take these med's

but for others I know lots of people who take  these and much much

more just to survive and I feel so sorry for ones  out there who suffer

in so much pain they can't even function at all  unless to take a pill

to get out of pain.  I would too if I had to  live in constant pain like

my mother does too.

Well enough chatting, and you hang in there, I'm  in Texas where

are you from?  Sounds like you are going  through things I'm going

through with my Mom.  My Mom did fall and  break her arm in

the home 2 months ago and it has been horrible for  her.

God bless!

in Texas

p.s.  To answer your questions (I'm not a  nurse or professional), just

see what goes on with my own mother day in day out  at the home,

I believe if they took her off all her med's for  even one day, it would

throw her for a loop, she would end up extremely  whacky.  And I

think with any new medicines added, it can throw  them in a loop.

Just what I've experienced with my own precious  mother who is

like a little girl most of the time now, bless her  heart, I love her

so much!  I leave there some days thinking  its like seeing about

a daughter of mine instead of a mother, she is so  vunerable in her

condition and at her age.  God be with our  loved ones!  Amen!

I pray to God each and every day all through the  day and especially

when I go up there and see her in this condition  with broke arm,

lewy body, hallucinating, for God to keep her  calm, God to keep

her safe, God to love her and be right next to  her, and Jesus to

hold on tight to her each and every day, and  especially when I'm

not up there watching her, asking her nurses  questions, her aides

questions, helping to feed her, on and  on.

I read nearly everything that  comes across this list, and find it 

extremely

helpful, although I keep quiet most of the time. However, I have  a

question for

the collective wisdom of the group.

My mother (age  79) is in a " memory unit " as they call it, at a continuing

care

center.  There is a quarantine of the unit because of a gastrointestinal

bug

going  around. Mom has not had the reguritation and diarrhea associated

with the 

bug, but she has evidently complained of an upset stomach. From what she 

tells

me (and remember, she has LBD) they stopped her medications when she 

mentioned

her nausea. And surprise, today she scared the hell out of my  father when

she

started talking about people coming into her room and  rearranging things

and

doing strange things to her dolls (she is a doll  collector). She has had

this

type of hallucination before, but not  recently. I am beginning th think

that she

is acting " wacky " (as my father  called it) because she was off her meds,

although I have not been able to  confirm that with the nurses. Getting any

information from these folks is  like pulling teeth. Anyway, she takes

effexor,

sinimet, excelon, and  seroquel.

My questions are these.  When people get an intestinal  bug, is it typical

to

stop all meds?

Second, could the abrupt  cessation of medication have brought on the

hallucations?

Thanks  for all the help and comfort this group brings.

Barbara, daughter of  Betsy

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Hi ,

Well...at least you finally met her doctor, but what he said is absolutely

stupid. Yeah...they probably keep people on pain meds so that they are drugged

out of their mind and don't know enough to call the nurse or complain about what

is ailing them. your mom's arm may not be still hurting, and if they do take

her off the pain pills, she is already addicted and going to feel pain for the

first day or so because that is how the addiction works. The doctors words

about them just staying in the NH is not funny at all. The people that are in

the nursing home have every right to live their lives as best as they can

without being drugged up...and giving pain pills so that they sleep most of the

time so that the nurses can just sit around and not have to attend to the daily

things that a patient has going on.

Sorry...just made me so mad that a doctor could say something like that.

>

> Hello Barbara,

> Reading your post I just had to reply back. I so wish I could

> help you and I'm sure others can offer help.

> What got me was when your mother told you that they

> stopped her medicines, and u didn't know if it was true or

> not. I had that same thing from my mother a week ago.

> When I went to visit she had been " out of it " hallucinating,

> drowsy, I can look in her EYES and see something is WRONG!

> Just by looking in her eyes at times, they look distant, far

> away for instance. She told me the gave her two doses of

> her medicines that morning at different times. So I didn't

> know whether to believe her or not. I don't trust this home

> that much either. Its not a horrific home, and its always clean,

> smells good, the staff are nice and good, my mother is almost

> always clean clean. But there are times I have questions, and

> I almost always ask them. But behind the scenes I wonder if

> they give people dope medicine to put them to sleep. Anyway,

> she just hadn't acted right at all when she told me about the

> 2 doses of medicine that morning. Same thing here, its like

> pulling teeth to get any straight forward answers from them!

>

> In fact, I was at the home Thursday, we have had a huge ice/snow

> storm here, but my husband drove me up there 10 min. away, 5

> mph., as she had very few clothes left and I do her laundry, so I

> had to take her clothes, and I have not met her dr. in the 7 months

> she's lived here and so I went to the desk and saw her night nurse

> so asked him about the INCONTINENCE pill they were supposed to

> have told the dr. about 2 weeks ago. He hem hawed around acting

> dumb, and I saw what looked to be a dr. sitting at the desk and he

> was Indian which I knew her drs. last name was indian name. Well,

> I talked loud and clear and very plain spoken to nurse and I noticed

> the dr. looking up at me with a wonder that who is she? Finally after

> a few minutes of the nurse trying to find her file, and telling me

> no they have not stopped her incontinence pill, I said WHY NOT?

> that it had been almost 2 weeks and I want the DOCTORS PHONE

> NUMBER to call him since he is only there on Thursdays and I have

> never met him. Well, low and behold, the dr. was her dr. the nurse

> told me, oh yeah, this is your mother's dr. Oh Really??? He knew

> that was her dr. all the while, but hem hawed around to me. So

> I told the dr. plain and clear that I belong to a LEWY BODY DEMENTIA

> group and INCONTIENCE pills are a big NO NO that they can cause

> more hallucinations and he agreed and said he is taking her off that

> one. I went on to ask him about pain medicine she is on, ULTRAM,

> and asked him if she would get addicted to it? He said, the way it

> is in nursing homes, it doesn't matter if the patients DO GET HOOKED

> or addicted to pain meds as they live there, they aren't going anywhere

> and they have to keep them pain free so living in there is just fine.

> I said, ok and went on. I really don't know what to think of that

> statement, as I don't take pain med's only if my Lupus is out of control

> horrible, which it can be several times a year, and I may have

> one Hydrocodone, low low dose of 250 and then I never have another

> one, I will also take Ibprofen 800 mg. one pill. I never take those

> kind of pills but one only and for one day and then I won't take

> another one for months. I just tend to not want to take these med's

> but for others I know lots of people who take these and much much

> more just to survive and I feel so sorry for ones out there who suffer

> in so much pain they can't even function at all unless to take a pill

> to get out of pain. I would too if I had to live in constant pain like

> my mother does too.

>

> Well enough chatting, and you hang in there, I'm in Texas where

> are you from? Sounds like you are going through things I'm going

> through with my Mom. My Mom did fall and break her arm in

> the home 2 months ago and it has been horrible for her.

>

> God bless!

> in Texas

>

> p.s. To answer your questions (I'm not a nurse or professional), just

> see what goes on with my own mother day in day out at the home,

> I believe if they took her off all her med's for even one day, it would

> throw her for a loop, she would end up extremely whacky. And I

> think with any new medicines added, it can throw them in a loop.

> Just what I've experienced with my own precious mother who is

> like a little girl most of the time now, bless her heart, I love her

> so much! I leave there some days thinking its like seeing about

> a daughter of mine instead of a mother, she is so vunerable in her

> condition and at her age. God be with our loved ones! Amen!

> I pray to God each and every day all through the day and especially

> when I go up there and see her in this condition with broke arm,

> lewy body, hallucinating, for God to keep her calm, God to keep

> her safe, God to love her and be right next to her, and Jesus to

> hold on tight to her each and every day, and especially when I'm

> not up there watching her, asking her nurses questions, her aides

> questions, helping to feed her, on and on.

>

>

>

>

>

>

> I read nearly everything that comes across this list, and find it

> extremely

> helpful, although I keep quiet most of the time. However, I have a

> question for

> the collective wisdom of the group.

>

> My mother (age 79) is in a " memory unit " as they call it, at a continuing

> care

> center. There is a quarantine of the unit because of a gastrointestinal

> bug

> going around. Mom has not had the reguritation and diarrhea associated

> with the

> bug, but she has evidently complained of an upset stomach. From what she

> tells

> me (and remember, she has LBD) they stopped her medications when she

> mentioned

> her nausea. And surprise, today she scared the hell out of my father when

> she

> started talking about people coming into her room and rearranging things

> and

> doing strange things to her dolls (she is a doll collector). She has had

> this

> type of hallucination before, but not recently. I am beginning th think

> that she

> is acting " wacky " (as my father called it) because she was off her meds,

> although I have not been able to confirm that with the nurses. Getting any

> information from these folks is like pulling teeth. Anyway, she takes

> effexor,

> sinimet, excelon, and seroquel.

>

> My questions are these. When people get an intestinal bug, is it typical

> to

> stop all meds?

>

> Second, could the abrupt cessation of medication have brought on the

> hallucations?

>

> Thanks for all the help and comfort this group brings.

>

> Barbara, daughter of Betsy

>

>

>

>

>

>

>

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