Re: welcome to azzie

[Guest guest]

In a message dated 1/7/02 9:06:14 PM Central Standard Time,

psaunders@... writes:

> These patients don't seem to require sleep, and since they don't " recall "

> being up all the time, its not a big deal for them to skip sleep. The rest

> of us (care givers) are not so lucky

Amen to that, . I think my LO still has an idea of how much he didn't

sleep, and oh boy, does he catch up during the day!! Nonetheless, life must

go on, and I awaken him when necessary to attend to whatever. Actually, he

DOES need the sleep he misses. But it sure does cut into MY qual time when I

have to wait all day long to see what shape he will be in. Sadly, it used to

seem the more he slept voluntarily, the worse off he would be, and that

doesn't seem to have changed.

Geez, what it takes to live with this animal . . .

Cheryl LL

[Guest guest]

In a message dated 1/7/02 8:55:35 PM Central Standard Time, mikk@...

writes:

> Cheryl, I got a chuckle from the way you described your nights. They are SO

> NOT funny but the way you put holding on to your bedsheet did make me

> smile. Lou is up and down, up to stand and then immediately goes thru

> great difficulty getting back into his favorite fetal position. Is that

> common? Also the round and round the bed pulling the sheets and blankets

> until

Mik I have no idea how common, except for in this house! But sounds like you

are enduring the same sort of thing. Last night was a MUCH better night as I

sent him back to the guest room. Confiscated his keys, of course, which must

be why I NEVER AWAKENED EVEN ONE TIME!! Aaaaaahhhhh

When I called the massage therapist today to cancel, she said she has

observed very subtle changes in Bob - called them " more childish " especially

as he approached me after sessions. Is it Me? Don't think so, but

appreciate her input.

Cheryl

[Guest guest]

, I am so, so sorry that things are so bad with . Gratefully, we

are not there (yet) and I can only agonize over how awful it must be for you.

Bob is only occasionally delusional, although I realize that it comes in so

many different forms. I hope so strongly that for you there will be a

reasonable combining of the past and present. Cheryl

[Guest guest]

You all are going to have to move to another bed/room

sooner or later if you want to keep your strength up during

the waking hours. If you don't you'll get run down and

sicken. (Whose going to take care of you both?)

These patients don't seem to require sleep, and since they

don't " recall " being up all the time, its not a big deal for

them to skip sleep. The rest of us (care givers) are not

so lucky. Seroquel & sinemet will not work for ever. :<

I think I would recommend the move early while the

patient can still tolerate the change...Baby monitors

are usefull if you need to move to a distant room. Just

make sure you don't get the cheap brands from radio shack

that spit out a ton of static.

Pat

mik32503 wrote:

> You will learn so much from reading everyone's post and know that you

> and your mother are not alone even tho we feel that way. We cannot

> describe to someone who is not living with LBD what it is like.

> Everyone asks how Lou is and I tell then not good but I can never

> truly explain to them what he does and how he behaves 24/7. You do

> feel alone and have less and less in common with other people. My

> heart is so torn apart for the loss of the person I once had, the

> companionship, the conversation, the walks, the adventures. Their

> are glimpses know and again but less and less in the last year.

>

> Cheryl, I got a chuckle from the way you described your nights. They

> are SO NOT funny but the way you put holding on to your bedsheet did

> make me smile. Lou is up and down, up to stand and then immediately

> goes thru great difficulty getting back into his favorite fetal

> position. Is that common? Also the round and round the bed pulling

> the sheets and blankets until redirected, and not always happily,

> back to bed. A few times he didn't know it was me and wasn't happy

> about " someone " telling him what to do. Then there's the help needing

> in the toilet.........

>

> , can you tell me what the doctor reduced the sinemet and other

> drugs to? Lou is taking the 25mg Seroquel and it helps at night but

> the hallucinations have increased overall. I am reluctant to

> increase the Seroquel but may.

>

> Mik

>

>

>

[Guest guest]

Mik,

You asked what adjustments the doctor made in 's medications. Until last

week, was on 10 mg Aricept and 25 mg Seroquel. The doctor increased the

Seroquel to 50 mg to try to get rid of the terrible hallucinations 's having

now.

We may need to also start eliminating the dopamine agonist (Mirapex) that

takes now, since it does contribute to cognitive problems. I just dread when he

can no longer walk on his own, as he does now. Before he was diagnosed with

LBD, his former neurologist increased the Mirapex and Sinemet, which brought on

an almost zombie like state, where couldn't talk or walk. It was

frightening. After was on Aricept, we were able to increase the Mirapex

without the same problems, but the doctor warned me that we might come to a

point when we would have to decide between mobility and cognizance.

As the folks on this board talked about hallucinations, I thought I understood

because had some really strange hallucinations, like jeeps driving into our

pond and firetrucks circling the fires that were actually behind the ridge and

out of sight. Now, he's seeing people all over the house, and I know what

people have been talking about. This is horrible. He gets so upset when we

tell him we can't see the people. He says he can't sit in his chair because a

man is sitting there and won't leave. If I wave my hand through where the " man "

is, gets upset because I'm making fun of him (not my intent at all). These

people are so real to him, he just can't accept that they aren't there. I can't

agree that they are there, because he would then expect me to help get rid of

them (they tell him that they live in our house). I can't tell him they are not

there because he " sees " them so clearly that he can't accept they aren't real.

So, I tell him I know they seem real to him but that I can't see them. Even

this frustrates him. It seems to be a no win situation.

Those of you who have LOs who see " people " around the house, how do you handle

it? I don't want to make feel bad or that I don't care, but I can't do

anything to help get rid of people who just aren't there! I'm praying the

increase in Seroquel has the desired effect.

Mik, I was reluctant to increase 's medications, mostly because I don't want

to rush to where the meds are no longer effective. I just can't deal with these

hallucinations. I'm on 60 mg of Celexa, and still am teary and having trouble

coping.

Hope you make the right decision for Lou and you. I only hope that those who go

through this after us can benefit from our learning experience!

[Guest guest]

>

> Those of you who have LOs who see " people " around the house, how do you handle

it? I don't want to make feel bad or that I don't care, but I can't do

anything to help get rid of people who just aren't there! I'm praying the

increase in Seroquel has the desired effect.

There is no convincing them they aren't there. They will enlist the

aid and opinion of others, dismissing anyone that disagrees.

This seems to be a phase, ours lasted many months.

(Drove my father crazy. He gave up talking about it or

trying to convince mom otherwise. (I don't know if its

the disease or due to medication sensitivity. But it seems to

lessen after a time. (Good luck getting through that period.)

[Guest guest]

We have been somewhat luckier then others with dad seeing things that are not

there. He sees good things, like little girls, dogs, horses, etc. There have

been accessions where he sees snakes. That really scares him. I get his

attention and tell him to look at my face to distract him from what he is

seeing and then I walk him in his wheel chair to take him away from what he

is seeing and it seems to work. The It is like having a child and having to

change the situation to change a negative into a positive. The Dr. told us at

the time as long as he is not seeing frightening things to let it be.

Dad is farther along in the decease then most here. When he started seeing

things we just played along with him and it seemed to comfort him. Remember,

What they see is real to them!! As time passed he would realize what he saw

was not real.

Dad is in a nursing home now. Their are days where he lives in the past. He

has a truck to move, to gas up the truck, or just get on the road. There have

been days where he acts like he has a rope or string in his hands and is busy

throwing it out then rolling it back in around his fingers. You can get his

attention and eye contact for a few minutes and his is back at it again. Then

the next day he is fine.

My heart goes out to all of you. An important thing to remember here is to

take care of yourselves. This road only gets harder as the decease

progresses.

Debbie

[Guest guest]

In a message dated 2002-01-08 12:24:38 AM Eastern Standard Time,

keakw@... writes:

> So, I tell him I know they seem real to him but that I can't see them. Even

> this frustrates him. It seems to be a no win situation.

>

Isn't everything we experience now no win? I refer to his hallucinations as

his Parkinson people which, so far, satisfies him as I do not have

Parkinsonism, he realizes I don't see them. Lately, they do not seem to be

too frightening to him, but they seem to come and go so much that sometimes

when he gives me a message I later find it is actually valid.

Ev