Re:Thanks everyone!

[Guest guest]

Hi Debbie,

My mom is the one with LBD in our family.

SHe had just moved in with us when she became incontinent and that

event (of losing bladder control) coincided with her hitting me. I

beleive they were linked.

Within 5 weeks, I had placed her into the home where she had been

attending 'day care' while I worked. It was an unusually smooth

transition brought on my her familiarity with the people and the

place. It was harder on me than her.

Re: your promise never to place him anywhere...I understand that this

is an issue of integrity for you. I know how much you want to keep

that promise. But, but, I KNEW when Mom's behavior switched to

aggression and paranoid hallucinations that my childrens mental

health and physical welfare became my top priority, and I had to put

Mom in. However, think about your dad's concerns: fear of

abandonment, loss of dignity, his pride, as the disease progresses,

these become more your issues than his.He will not KNOW that he has

been placed. He is already confused about where " home " is, he will

not fear the abandonment anylonger, because he will not remember he

is somewhere besides your home. He will not fear his loss of dignity,

because he will be focused internally, rather than about what others

think and how he appears. My mother was afraid of being the " kind of

person " who is in a home. Her pride became a non issue in the face of

her needs.

You are right, anger is a difficult part of all this. And yet, in

placing my mom, it allowed me to not be angry, to move beyond that

and resume a loving relationship with her because I was not in that

position of 24/7 caregiver. I was not sleep deprived and bleary eyed.

It was better for all of us. She brightens when I go to see her which

is every other day or so, and she enjoys some aspects of her life. I

know I did the right thing at the right time. You will too. But don't

be afraid to hire help, and when the time comes, do not think of

placing your dad as a " broken promise " but as a continuation of the

promise to keep caring for him. After all, his goal in extracting

that promise was basically- " don't leave me " and you will not. Bless

you. Leigh

>

> Debbie,

>

> I handled most stuff except Mom hitting me. It was my limit. And

when she starting using her cane as a weapon, I warned her and

expected her to remember. I warned her again and said I would take

her cane away.

>

> Finally she raised it one more time and I took it away and said now

she would have to use the walker. She " couldn't find " her cane for a

number of days. I didn't mince words. I told her I had it and she

couldn't have it back because she hit people with it. And now she

would have to use the walker.

>

> Course she denied hitting anyone and I did what I did with my

kids. Sorry, yes you did and now you can't have it. It didn't take

long and she did use the walker which really worked better anyway as

it balanced her. And she couldn't use the walker for a weapon like

she could the cane.

>

> I had to be concerned she would use it on others including my

grandkids when she got angry and I didn't want anyone to get hurt.

>

> That was how I solve my problems.

>

> Hope this helps and I do know how difficult this is and take it a

day at a time.

>

> Donna R

>

> Do you want to read more about Lewy Body? You can also read the

Thistle, the LBD Newsletter. Just click on:

>

> http://www.lewybodydementia.org

>

>

> Re:Thanks everyone!

>

> Hi Everyone,

> Just got done reading the last digest I rec'd (#2785). I've been

> reading lately instead of posting. Please forgive me up front

> because I will probably ramble. Thank you for listening.

> I'm not doing too well. I'm frustrated and at my wits end. I feel

> like I'm being a big baby because after reading this last digest,

my

> problems seem minor compared to some of yours. However, I need to

> vent and ask questions.

> May God be with and Bless you all who are dealing with this

disease.

> I Thank you all, but there are a few people who have been extremly

> helpful with info. I would like to thank you personaly (I hope you

> know who you are), I just can't seem to find the emails I printed

> out with your names. Just too much going on. Know what I mean?

> Guess I'm hoping some of you can give me some insight and advice. I

> try to make Dad do as much for himself as possible at this point...

> Since he's still capable. I don't " baby " him. Am I wrong?

> Dad, diagnosed with LBD about a month ago is still walking and

> feeding himself. I or another person prepare all his meals. We had

> to take all knobs off the stove because he will try to cook for

> himself in the middle of the night (even though he's been fed very

> well). He doesn't turn burners off (I'm afraid of fire). He is

> incontinent most the time (day and night)and even though I have

> diapers for him, most the time he refuses or forgets to put them on

> (usually refusing). He's still a very proud and " Stubborn " man! The

> house stinks because he pee's all over the place and then blames it

> on people who aren't even there. He won't sleep in his bed, he

say's

> there is a " couple " in there (even after I show him nobody is

> there). He also insist we are not at his house and packs bags to go

> home or elsewhere. He says he (we) need to go upstairs (no

upstairs,

> single story ranch house). He will show me where the steps are and

> he actually see's them even though they are not there (what do I do

> and how do I respond?).

> He is a large man (240) and I'm a mid size woman (140). He

sometimes

> gets physical and tries to fight me or hit me with his cane! He has

> hurt me a couple times (don't think purposely though), so I brushed

> it off... I just don't know what to do anymore.

> I've always promised him I wouldn't put him in a home and I don't

> want to break my promise. I just feel like we are both angry at

each

> other a good portion of the time. Actually, one moment he acts as

> though he hates me and the next moment he's very nice and sweet to

> me! Mine is more frustration and not knowing how to deal than anger!

> Dad was recently put on new meds... The drugs he was put on

> are " Quetiapine " 25mg; 1 tab 3x day for mood stabilization and

> hallutionations and 100 mg at bedtime for sleep and hallutionations

> (seems to have worked fairly well). Is this the same drug as

Sinemet?

> Then we were to start Rivastigmine Tartrate 1.5mg; four days later

> (what a disaster)? He was suppose to start this one at 1x a day and

> then increase after a 7 day period (then increase again 2x's more

> after each 7 days)... but after just 3 days on the drug he got more

> aggressive, violent and hallucinations were totally " out of

control "

> (more than before)! I immediately took him off of it. I will call

> the VA on Wed. (only day the Doc's & Pharmacist at Loma VA in

> S CA are there for info)! Two days ago we started him on Divalproex

> NA 250mg EC tab (2x day). This one is supposedly for mood too. He

> seems to be responding to this one ok.

> I haven't seen these specific drugs mentioned on this site. Just

> wondering if anyone knows anything about these drugs and if they

are

> just generics for brand names mentioned here? We have gone through

> the VA and were told they were the newest and greatest drugs for

> LBD.

> Hugs and Best of Wishes for you all in the New Year,

> Debbie

> PS. is my Father

>

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Boy! your response was well written. I remember my dad asking us to

promise " not to put him in a home " My sister was strong enough to

say she would not promise but she would do what was best for him...

We too tried to keep him at home with my mom but he ran away 3x with

the paranoia and he became a danger to himself and others... So we

went through assisted living, 2 nh and finally a fabulous dementia

care facility where he is loved and taken care of and yes we still

visit him so we have not abandoned him we just realize on our own we

could not take care of him. We would ( and have) followed him to

hell and back because we love him so much and I thank God every day

that we found this facility and there are people who can do what

they do to ease a little of the pain this disease causes.

As a note: we have contacted Yale Pathology and have it set up so

when my dad dies they can autopsy his brain for research. It

involves apx 1 hour and a small incision in the back of the head.

The only cost is for transport by the funeral home (and 2 homes I

contacted agreed to waive any additional transport fee) So if

nothing else at least we can use this disease to help in developing

research. The other recomendation I have would be to make sure the

OBIT states " died from Lewy Body Disease " so people can read and ask

questions -- education is our best tool..

> >

> > Debbie,

> >

> > I handled most stuff except Mom hitting me. It was my limit.

And

> when she starting using her cane as a weapon, I warned her and

> expected her to remember. I warned her again and said I would

take

> her cane away.

> >

> > Finally she raised it one more time and I took it away and said

now

> she would have to use the walker. She " couldn't find " her cane

for a

> number of days. I didn't mince words. I told her I had it and she

> couldn't have it back because she hit people with it. And now she

> would have to use the walker.

> >

> > Course she denied hitting anyone and I did what I did with my

> kids. Sorry, yes you did and now you can't have it. It didn't

take

> long and she did use the walker which really worked better anyway

as

> it balanced her. And she couldn't use the walker for a weapon

like

> she could the cane.

> >

> > I had to be concerned she would use it on others including my

> grandkids when she got angry and I didn't want anyone to get hurt.

> >

> > That was how I solve my problems.

> >

> > Hope this helps and I do know how difficult this is and take it

a

> day at a time.

> >

> > Donna R

> >

> > Do you want to read more about Lewy Body? You can also read the

> Thistle, the LBD Newsletter. Just click on:

> >

> > http://www.lewybodydementia.org

> >

> >

> > Re:Thanks everyone!

> >

> > Hi Everyone,

> > Just got done reading the last digest I rec'd (#2785). I've been

> > reading lately instead of posting. Please forgive me up front

> > because I will probably ramble. Thank you for listening.

> > I'm not doing too well. I'm frustrated and at my wits end. I

feel

> > like I'm being a big baby because after reading this last

digest,

> my

> > problems seem minor compared to some of yours. However, I need

to

> > vent and ask questions.

> > May God be with and Bless you all who are dealing with this

> disease.

> > I Thank you all, but there are a few people who have been

extremly

> > helpful with info. I would like to thank you personaly (I hope

you

> > know who you are), I just can't seem to find the emails I

printed

> > out with your names. Just too much going on. Know what I mean?

> > Guess I'm hoping some of you can give me some insight and

advice. I

> > try to make Dad do as much for himself as possible at this

point...

> > Since he's still capable. I don't " baby " him. Am I wrong?

> > Dad, diagnosed with LBD about a month ago is still walking and

> > feeding himself. I or another person prepare all his meals. We

had

> > to take all knobs off the stove because he will try to cook for

> > himself in the middle of the night (even though he's been fed

very

> > well). He doesn't turn burners off (I'm afraid of fire). He is

> > incontinent most the time (day and night)and even though I have

> > diapers for him, most the time he refuses or forgets to put them

on

> > (usually refusing). He's still a very proud and " Stubborn " man!

The

> > house stinks because he pee's all over the place and then blames

it

> > on people who aren't even there. He won't sleep in his bed, he

> say's

> > there is a " couple " in there (even after I show him nobody is

> > there). He also insist we are not at his house and packs bags to

go

> > home or elsewhere. He says he (we) need to go upstairs (no

> upstairs,

> > single story ranch house). He will show me where the steps are

and

> > he actually see's them even though they are not there (what do I

do

> > and how do I respond?).

> > He is a large man (240) and I'm a mid size woman (140). He

> sometimes

> > gets physical and tries to fight me or hit me with his cane! He

has

> > hurt me a couple times (don't think purposely though), so I

brushed

> > it off... I just don't know what to do anymore.

> > I've always promised him I wouldn't put him in a home and I

don't

> > want to break my promise. I just feel like we are both angry at

> each

> > other a good portion of the time. Actually, one moment he acts

as

> > though he hates me and the next moment he's very nice and sweet

to

> > me! Mine is more frustration and not knowing how to deal than

anger!

> > Dad was recently put on new meds... The drugs he was put on

> > are " Quetiapine " 25mg; 1 tab 3x day for mood stabilization and

> > hallutionations and 100 mg at bedtime for sleep and

hallutionations

> > (seems to have worked fairly well). Is this the same drug as

> Sinemet?

> > Then we were to start Rivastigmine Tartrate 1.5mg; four days

later

> > (what a disaster)? He was suppose to start this one at 1x a day

and

> > then increase after a 7 day period (then increase again 2x's

more

> > after each 7 days)... but after just 3 days on the drug he got

more

> > aggressive, violent and hallucinations were totally " out of

> control "

> > (more than before)! I immediately took him off of it. I will

call

> > the VA on Wed. (only day the Doc's & Pharmacist at Loma VA

in

> > S CA are there for info)! Two days ago we started him on

Divalproex

> > NA 250mg EC tab (2x day). This one is supposedly for mood too.

He

> > seems to be responding to this one ok.

> > I haven't seen these specific drugs mentioned on this site. Just

> > wondering if anyone knows anything about these drugs and if they

> are

> > just generics for brand names mentioned here? We have gone

through

> > the VA and were told they were the newest and greatest drugs for

> > LBD.

> > Hugs and Best of Wishes for you all in the New Year,

> > Debbie

> > PS. is my Father

> >

> >

> >

> >

> >

> >

> >

> >

> > Welcome to LBDcaregivers.

> >

> >

> >