Re: stopping meds

[Guest guest]

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

[Guest guest]

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