RE: My Father and LBD

[Guest guest]

Your mother is going thru the same as I, with him not knowing her, thinks I

leave and others who look the same

are here. He doesn't trust them and hates me for leaving him.

(which I don't ever do). Lately he seems to take in stride,don't

get as agitated as he used to. It's very hard. I know how your

mother feels. I feel for her. LOL Pat,SC

--------------------------------------------------------------

My Father was diagnosed with Parkinson's about 5 years ago. Beginning in August

of this past year he began to deteriorate further and in the last few months the

cognitive deterioration has been fast moving and difficult to manage. An

agonist for the Sinamet he was taking was thought to have caused a severe

outburst at that time and he was hospitalized to remove him from that medication

and add one to control his hallucinations.

About 2 years ago LBD was mentioned by a psychiatrist, but the Parkinson's Dr.

did not think it was part if Dad's disease at that time. We have since had to

come to terms with the fact that he has both Parkinson's and LBD. Dad is on a

tremendous amount of medication and nothing seems to be working at this point.

He lives at home with my mother and is having increasing episodes of

hallucinations and confusion. At these times he appears to be mixing a variety

of events past, present and imagined together to form his reality. He is at

times very aggitated. At times he does not believe she is his wife and refuses

to listen to her. He has had some paranoia about her leaving him etc. My

siblings and I are realizing with Mom that the days that she can care for him at

home may be numbered. Any suggestions, help, feedback on ways to deal with Dad,

help my mother and help us all cope would be wonderful.

Welcome to LBDcaregivers.

[Guest guest]

We have been able to care for my FIL in his home with a 24 hour

caregiver. She's been wonderful. He seems to be at least as far

along as your Father. It is expensive. We're in California and it

runs about $140 per day. Putting him in an Alzheimer's home though

is also expensive - about $3000 per month. It's a very nice place

but 4 share a bathroom and 2 share a room. They are staffed 1 to 8

patients. Besides us wanting to keep him at home in familiar

surroundings, we're not sure how they would deal with the various

aspects of this disease. This is working at least. We know he is

safe. He gets help getting up and down, going to the bathroom,

getting up at night and she is very patient with his various moods

and confusion. Recently he was paranoid about her but for the moment

we have worked thru that.

Good luck

SEPJ

> My Father was diagnosed with Parkinson's about 5 years ago.

Beginning in August of this past year he began to deteriorate

further and in the last few months the cognitive deterioration has

been fast moving and difficult to manage. An agonist for the

Sinamet he was taking was thought to have caused a severe outburst

at that time and he was hospitalized to remove him from that

medication and add one to control his hallucinations.

>

> About 2 years ago LBD was mentioned by a psychiatrist, but the

Parkinson's Dr. did not think it was part if Dad's disease at that

time. We have since had to come to terms with the fact that he has

both Parkinson's and LBD. Dad is on a tremendous amount of

medication and nothing seems to be working at this point. He lives

at home with my mother and is having increasing episodes of

hallucinations and confusion. At these times he appears to be

mixing a variety of events past, present and imagined together to

form his reality. He is at times very aggitated. At times he does

not believe she is his wife and refuses to listen to her. He has

had some paranoia about her leaving him etc. My siblings and I are

realizing with Mom that the days that she can care for him at home

may be numbered. Any suggestions, help, feedback on ways to deal

with Dad, help my mother and help us all cope would be wonderful.

[Guest guest]

I am sure your father is angry because of his inability to do things he use

to do. Letting it not agitate you and your mother is the trick. I found that

as much as I could I would just go along with whatever my mother said as

long as it was not going to hurt her or anyone else. Also changing the

subject if you can.

M

>From: jtimmons12@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: My Father and LBD

>Date: Tue, 24 Feb 2004 19:12:35 +0000

>MIME-Version: 1.0

>X-Sender: jtimmons12@...

>Received: from n27.grp.scd.yahoo.com ([66.218.66.83]) by mc4-f5.hotmail.com

>with Microsoft SMTPSVC(5.0.2195.6824); Tue, 24 Feb 2004 11:13:57 -0800

>Received: from [66.218.67.192] by n27.grp.scd.yahoo.com with NNFMP; 24 Feb

>2004 19:13:13 -0000

>Received: (qmail 18567 invoked from network); 24 Feb 2004 19:13:09 -0000

>Received: from unknown (66.218.66.217) by m10.grp.scd.yahoo.com with QMQP;

>24 Feb 2004 19:13:09 -0000

>Received: from unknown (HELO mtiwmhc11.worldnet.att.net) (204.127.131.115)

>by mta2.grp.scd.yahoo.com with SMTP; 24 Feb 2004 19:13:08 -0000

>Received: from 204.127.135.59 ([204.127.135.59]) by

>worldnet.att.net (mtiwmhc11) with SMTP id

><200402241912351110001rr5e>; Tue, 24 Feb 2004 19:12:35 +0000

>Received: from [12.77.122.148] by 204.127.135.59;Tue, 24 Feb 2004 19:12:35

>+0000

>X-Message-Info: JGTYoYF78jGcImSNZXbeyJs7zr4veG4T

>X-eGroups-Return:

>sentto-2141318-25603-1077649991-cat86443=hotmail.com@...

>X-Apparently-To: LBDcaregiversegroups

>Message-Id:

>X-Mailer: AT & T Message Center Version 1 (Feb 13 2004)

>X-Authenticated-Sender: anRpbW1vbnMxMkBhdHQubmV0

>X-eGroups-Remote-IP: 204.127.131.115

>X-Yahoo-Profile: jtimmons12

>Mailing-List: list LBDcaregivers ; contact

>LBDcaregivers-owner

>Delivered-To: mailing list LBDcaregivers

>Precedence: bulk

>List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe >

>Return-Path:

>sentto-2141318-25603-1077649991-cat86443=hotmail.com@...

>X-OriginalArrivalTime: 24 Feb 2004 19:13:57.0355 (UTC)

>FILETIME=[59EE73B0:01C3FB0A]

>

>My Father was diagnosed with Parkinson's about 5 years ago. Beginning in

>August of this past year he began to deteriorate further and in the last

>few months the cognitive deterioration has been fast moving and difficult

>to manage. An agonist for the Sinamet he was taking was thought to have

>caused a severe outburst at that time and he was hospitalized to remove him

>from that medication and add one to control his hallucinations.

>

>About 2 years ago LBD was mentioned by a psychiatrist, but the Parkinson's

>Dr. did not think it was part if Dad's disease at that time. We have since

>had to come to terms with the fact that he has both Parkinson's and LBD.

>Dad is on a tremendous amount of medication and nothing seems to be working

>at this point. He lives at home with my mother and is having increasing

>episodes of hallucinations and confusion. At these times he appears to be

>mixing a variety of events past, present and imagined together to form his

>reality. He is at times very aggitated. At times he does not believe she

>is his wife and refuses to listen to her. He has had some paranoia about

>her leaving him etc. My siblings and I are realizing with Mom that the

>days that she can care for him at home may be numbered. Any suggestions,

>help, feedback on ways to deal with Dad, help my mother and help us all

>cope would be wonderful.

_________________________________________________________________

Dream of owning a home? Find out how in the First-time Home Buying Guide.

http://special.msn.com/home/firsthome.armx

[Guest guest]

Hello, Sorry about your father's diagnosis. This as you will learn is a terrible

disease for the patient and the family. My mother has LBD and Parkinson's

syndrome. The hardest part for the family, in my opinion, is dealing with the

hallucinations and altered reality. I was told by my mother's psychiatrist that

we were not to argue or try to change her mind about her " reality. " This would

only make her more confused and angry. It is like accepting feelings as facts.

They are not to be argued with! Working around them is a real challenge, and

sometimes impossible.

After 2 years, my mother is finally medicated in such a way that she is not

being difficult anymore. She is not having anymore hallucinations. So hope

can be on the horizon for you and your family. My mother got a little

aggressive taking Sinamet, so we backed way off, but she is still taking it. I

would rather have her walk a little stiff, than have her be aggressive. As in

most things, many meds have trade offs. I believe this disease can be

managed. We got the most mileage from seeing a psychiatrist who is tuned in

to LBD. The neurologist was really only wanting to treat the Parkinsons, but

our biggest caregiving problem was her behavior. The psychiatrist believed

that the family was just as important as the patient, and we should be

considered too, so that we could go on with our lives in the middle of this

crisis, which I believe this disease is. This was really important for us.

Wishing you calm in the middle of this storm and hope you can find the help

you need to be able to help your father and your mother get through this with

dignity.

> My Father was diagnosed with Parkinson's about 5 years ago. Beginning in

August of this past year he began to deteriorate further and in the last few

months the cognitive deterioration has been fast moving and difficult to

manage. An agonist for the Sinamet he was taking was thought to have

caused a severe outburst at that time and he was hospitalized to remove him

from that medication and add one to control his hallucinations.

>

> About 2 years ago LBD was mentioned by a psychiatrist, but the Parkinson's

Dr. did not think it was part if Dad's disease at that time. We have since had

to

come to terms with the fact that he has both Parkinson's and LBD. Dad is on a

tremendous amount of medication and nothing seems to be working at this

point. He lives at home with my mother and is having increasing episodes of

hallucinations and confusion. At these times he appears to be mixing a

variety of events past, present and imagined together to form his reality. He

is

at times very aggitated. At times he does not believe she is his wife and

refuses to listen to her. He has had some paranoia about her leaving him etc.

My siblings and I are realizing with Mom that the days that she can care for

him at home may be numbered. Any suggestions, help, feedback on ways to

deal with Dad, help my mother and help us all cope would be wonderful.

[Guest guest]

Sounds like we are in the same boat.

My Dad was dg about 5-7 years ago but it was always atypical ... he doesn't have

a tremor - but its the shuffling walk and the small

handwriting. Most meds never helped much and he didn't tolerate them well.

In august he was on Sinemet (3 pills 3x a day) with Permax, nore Lodosyn ..

He had some cognitive disfunction - but it seemed to fluctuate ... also didn't

seem as bad when other people were around (so it was

like we were exagerating it - or HE was faking it ?)

He went into the hospital in August for pneumonia ... and its really been

downhill since.

First of all they gave him Ativan & /or Ambien and that was a no-no ... then they

changed his meds to Sinemet CR and added Comtan

.... then he went to rehab - and he got a UTI so back to the hospital.

By then the mental changes were getting worse. He must dream things and think

they are real ? He called my uncle once to tell him

my neice had died ! (not true) but for days we couldn't convince him (he wanted

his nice suit and shoes for the funeral etc). Event

talking to her on the phone didn't convince him - then one day he forgot about

it.

Thats when we started really thinking LBD ... now he's in the hosptal again for

pneumonia and a c.diff infection and we mentioned it to

the Neuro - he took him off the Permaz and Comtan and added Aricept. But before

that could really kick in - some smart in house doc

tor gave him Haldol (the biggest no no in the WORLD). Well that sent him into a

tailspin. He was in a complete zombie state for 4

days - he was moved to rehab but they can't really rehab a person in zome-state

! He won't eat, talk, take meds or anything. Although

when we come he does seem to know we are there and will eat and take meds from

my mom.

Now he's back in the hospital for a feeding tube.

We too are approaching the reality that we probably won't be able to care for

him at home much longer. Especially as we have no help

! It was just mom and I (and my husband on weekends) ... we had an aid come once

or twice a week to give him a shower (he was

still mobile then) but more often than not she was cancelled.

We haven't sorted the logistics of in-home help - as my mom doesn't want anyone

in HER house - and where would mom sleep if

there was an aid etc... how does that all work ?? But mom wasn't getting any

sleep the last two weeks before this last hosptial go

round i- it was worse than having an infant.

so all in all ... I'm not sure I have much to tell you - except i SOOO know

where you - and I never though anyone else could

understand where *I* am... but I'm finding there are lots like us out there.

BIG HUG

Donna

> My Father was diagnosed with Parkinson's about 5 years ago. Beginning in

August of this past year he began to deteriorate further

and in the last few months the cognitive deterioration has been fast moving and

difficult to manage. An agonist for the Sinamet he

was taking was thought to have caused a severe outburst at that time and he was

hospitalized to remove him from that medication

and add one to control his hallucinations.

>

> About 2 years ago LBD was mentioned by a psychiatrist, but the Parkinson's Dr.

did not think it was part if Dad's disease at that

time. We have since had to come to terms with the fact that he has both

Parkinson's and LBD. Dad is on a tremendous amount of

medication and nothing seems to be working at this point. He lives at home with

my mother and is having increasing episodes of

hallucinations and confusion. At these times he appears to be mixing a variety

of events past, present and imagined together to form

his reality. He is at times very aggitated. At times he does not believe she

is his wife and refuses to listen to her. He has had some

paranoia about her leaving him etc. My siblings and I are realizing with Mom

that the days that she can care for him at home may be

numbered. Any suggestions, help, feedback on ways to deal with Dad, help my

mother and help us all cope would be wonderful.