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Re: I Think The Time Has Come/ April

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Oh dear April, it's all so typical here. I think your

FIL slept until noon, because your MIL gave him the

extra dosage of Sominex the night before, because he

was threatening her for it. I am not sure if Sominex

comes in pill form or liquid, but one of the tricks

here when our LOs threaten to have an extra dosage of

medication is to give them a Tic Tac or Vitamin Pill

in place of it and they usually don't know the

difference. If it's liquid, substitute it with honey

or something liquidy. I'm not sure how a LO would

react to Sominex, it could make them very confused,

since they are highly sensitive to medications and

your FIL was reacting to the first dosage and that is

why he was threatening. There are only certain

medications for sleeping that are compatible for LBD.

It is a good thing that the guns are locked up. I sure

hope that you have all made sure that they are and any

other weapons he can use, such as cuttlery in the

house or anything that can be used as a weapon. It is

not a joke that they can use these things, because

they are not in their right mind. It should be taken

very seriously.

Also, one of the symptoms of LBD besides visual

hallucinations is smell and smelling smoke is one of

the common hallucinations. Your mother needs to play

along with it. My husband also smells smoke from time

to time and I have dialed POPCORN that gives the time

on the phone and pretended to talk with the fire dept.

about it. That is all you need to do to make them feel

something has been done. They can not reason about the

fire truck showing up. My husband doesn't care after

the call has been made. Others have other things that

they do, I actually read where someone went on the

roof with a hose to relieve the LO. Your mother will

have to act some things out. I know it sounds weird,

but sometimes to alleviate the urgency for them, you

need to become a part of the hallucination to put an

end to it. Also, there is taste, touch and hearing

hallucinations too, besides the visual hallucinations.

April, it is only going to get worse before it gets

better, but your mother will have to play the game,

tell little white lies, it's survival for the

caregiver.

I hope this helps you a little to realize it is only

LBD doing it's thing and your MIL is not alone.

Hugs, Jan

--- aswest1021 wrote:

> Hi Everyone,

>

> I just returned from having lunch with my husband.

> He had spoken to

> his mom earlier today. She informed him that she

> had an awful night

> with my FIL last night/early morning. He awakened

> my MIL around 2

> a.m. saying he couldn't sleep. He wandered all

> throughout the house

> for awhile, then he started demanding that my MIL

> give him some more

> sleeping medication. He takes some sort of medicine

> right before

> bedtime that helps him relax so he'll sleep better.

> She refused

> because he'd already taken the prescribed dosage.

> My MIL said my

> FIL started screaming at her saying, " Give me my

> medicine now! " He

> went into the bathroom and tore through nearly every

> drawer in there

> looking for it. She said she got very nervous about

> the way he was

> acting and even told herself that if he had found a

> gun, he probably

> would have shot her. Now, how scary is that? My

> MIL finally caved

> in and gave him some Sominex and he, supposedly,

> went to sleep

> eventually.

>

> My MIL said he got up this morning and just wasn't

> acting quite

> right. She said she gave him some cereal because

> she didn't have

> time to make him anything. After awhile, she came

> to the conclusion

> that he was still asleep, so she took him and put

> him back to bed.

> At noon today, he was still asleep in bed and he

> usually gets up

> around 7 a.m.

>

> Yesterday, as they were getting ready to walk out

> the door to go to

> church, my FIL had a bout of diarrhea, so my MIL had

> to clean him

> up. She had to call my BIL down to stay with my

> FIL, so my she

> could go on to church. She also mentioned that my

> FIL thought he

> smelled smoke yesterday and made my BIL climb up

> into the attic to

> make sure something wasn't on fire; all was fine.

> When my BIL told

> my FIL that everything checked out, my FIL said,

> " Are you calling me

> a liar? " He's actually said that many times before.

> It's as though

> he feels that no one believes him.

>

> I definitely believe the time has come for my MIL to

> either get

> someone to come in and help her or to put my FIL in

> an assisted

> living facility. She simply cannot keep up at this

> pace. My heart

> just breaks for her each time I hear about what

> she's having to

> endure. My FIL will see a neurologist here in

> Atlanta by the name

> of Dr. Factor on April 25th for a second

> opinion. I hope he

> will be able to encourage my MIL to find some help.

> If she keeps

> going like this, she will not be around in the next

> several years.

>

> Thanks for listening.

>

> April

>

>

>

>

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

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Hello April,

Since I just got off of the emotional roller coaster that Jan is talking

about I feel qualified to respond to what you wrote: " Is there truly improvement

on the horizon or are we just kidding ourselves? " If your FIL truly has LBD

you ARE kidding yourselves if you think he will get better, because he won't.

He will " plateau " and then get slightly worse each week/month and you won't

notice it because he will fool your emotions into thinking all is well with the

" SHOWTIME " that LBD LO's are master of. He wasn't " better " or " improved " when

your husband " saw " his Dad. He " saw " SHOWTIME and I'm betting your FIL went

right back to his LBD ways as soon as your husband got into his car.

My Uncle is in the last, long stage of LBD (actually PDD) and he was in the

stage your FIL is in now for TWO YEARS before he dipped silently into this

current stage. It was grueling and emotionally frustrating (read past posts I

wrote) because Mr. B thought nothing was wrong with him and when his friends

would come over they thought I was fibbing to them about his condition. It was

horrible and it almost put me into the hospital.

Your FIL has a bit of a way to go if he has LBD/PDD and the best thing to do

at this point is breathe and try not to get too dizzy from the ride.

Much Peace sent to you and your family, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

UTI since 4/7 not getting any better - took Bactrim

Sleeping most of the day, breathing becoming an issue, asking for oxygen

daily.

Uncle got a Living Trust when he was still living on his own.

* * * * * *

--- aswest1021 wrote:

> Jan,

>

> You wrote, " Things will get worse before they get

> better. "

> Is there truly improvement on the horizon or are we

> just kidding

> ourselves?

>

> By the way, my husband drove over and saw my in-laws

> tonight on his

> way to a meeting. He said my FIL got around

> amazingly well. It's

> astonishing how things can change day to day, moment

> to moment.

>

> April

>

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Sorry, April, I meant for your MIL. If she doesn't

play the game, she will burn out before your FIL. So

things will get worse before they get better for her.

She can not think of things realistically and give

your FIL overdoses of medication, because he demands

it. He does not know what he is doing when he is in a

state of confusion like that. She needs to substitute

a vitamin pill or a candy or honey or molasses or

something syrupy for the liquid instead of giving him

overdoses, because he is demanding. The smoke smell is

a common hallucination smell. One of the caregivers

here at one time had such a hard time with convincing

her LO that there was no smoke, she took the hose and

sparayed the roof. Sometimes you have to get into the

hallucination to put an end to it and it will satisfy

the LO. It is a very rocky road of ups and downs, you

never know where you are at from day to day with your

LO. And sometimes things do appear to get better with

the LO and causes the caregiver to think that maybe

things are getting better and then the dip comes again

and more nightmares. No, the LO can not actually get

better as in overcome the illness, but they can

plateau where things seem to not get any worse for

awhile.

Your last paragraph explains what I am trying to tell

you about the ups and down and emotional roller

coaster of this disease. Unless you see the person

constantly, what you see may not be what your MIL

sees. The comparison from what you saw at your house

recently to what your husband just saw explains that.

I hope this answers some of your questions.

I am sorry that I confused you. Jan

--- aswest1021 wrote:

> Jan,

>

> You wrote, " Things will get worse before they get

> better. "

> Is there truly improvement on the horizon or are we

> just kidding

> ourselves?

>

> By the way, my husband drove over and saw my in-laws

> tonight on his

> way to a meeting. He said my FIL got around

> amazingly well. It's

> astonishing how things can change day to day, moment

> to moment.

>

> April

>

>

>

> >

> > > Hi Everyone,

> > >

> > > I just returned from having lunch with my

> husband.

> > > He had spoken to

> > > his mom earlier today. She informed him that

> she

> > > had an awful night

> > > with my FIL last night/early morning. He

> awakened

> > > my MIL around 2

> > > a.m. saying he couldn't sleep. He wandered all

> > > throughout the house

> > > for awhile, then he started demanding that my

> MIL

> > > give him some more

> > > sleeping medication. He takes some sort of

> medicine

> > > right before

> > > bedtime that helps him relax so he'll sleep

> better.

> > > She refused

> > > because he'd already taken the prescribed

> dosage.

> > > My MIL said my

> > > FIL started screaming at her saying, " Give me my

> > > medicine now! " He

> > > went into the bathroom and tore through nearly

> every

> > > drawer in there

> > > looking for it. She said she got very nervous

> about

> > > the way he was

> > > acting and even told herself that if he had

> found a

> > > gun, he probably

> > > would have shot her. Now, how scary is that?

> My

> > > MIL finally caved

> > > in and gave him some Sominex and he, supposedly,

> > > went to sleep

> > > eventually.

> > >

> > > My MIL said he got up this morning and just

> wasn't

> > > acting quite

> > > right. She said she gave him some cereal

> because

> > > she didn't have

> > > time to make him anything. After awhile, she

> came

> > > to the conclusion

> > > that he was still asleep, so she took him and

> put

> > > him back to bed.

> > > At noon today, he was still asleep in bed and he

> > > usually gets up

> > > around 7 a.m.

> > >

> > > Yesterday, as they were getting ready to walk

> out

> > > the door to go to

> > > church, my FIL had a bout of diarrhea, so my MIL

> had

> > > to clean him

> > > up. She had to call my BIL down to stay with my

> > > FIL, so my she

> > > could go on to church. She also mentioned that

> my

> > > FIL thought he

> > > smelled smoke yesterday and made my BIL climb up

> > > into the attic to

> > > make sure something wasn't on fire; all was

> fine.

> > > When my BIL told

> > > my FIL that everything checked out, my FIL said,

> > > " Are you calling me

> > > a liar? " He's actually said that many times

> before.

> > > It's as though

> > > he feels that no one believes him.

> > >

> > > I definitely believe the time has come for my

> MIL to

> > > either get

> > > someone to come in and help her or to put my FIL

> in

> > > an assisted

> > > living facility. She simply cannot keep up at

> this

> > > pace. My heart

> > > just breaks for her each time I hear about what

> > > she's having to

> > > endure. My FIL will see a neurologist here in

> > > Atlanta by the name

>

=== message truncated ===

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

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April, not all LOs are combative, but many are. My

husband also is combative. There are some things that

can cause combativeness even if the person typically

is not combative and that is any kind of infection,

such as a UTI (Urinary Tract Infection) Pneumonia,

Also, Anesthetics and if the medications are wrong and

not compatible with LBD. My husband is normally

combative and the things that he usually is combative

about is toileting, he does not recognize a toilet,

but in the day when he is awake, he can tell me he

needs to go to the bathroom, but when he gets there he

does not want to go in the toilet and will hit at me,

attempt to push me and kick at me to avoid the toilet

and would rather pee on the floor. It is always an

argument. I wouldn't mind if he would just pee in his

diaper, but he pulls them down to pee on the floor and

all over his clothes that are pulled down around his

knees. When he is sleeping he is incontinent and pees

in his diaper, which is so much easier for me. Other

things are when he wants to be independent, but he is

not safe in what he wants to do and I interfere for

his safety, he gets very aggressive with me. He is

obsessive with tearing things out of drawers and

closets and redistributing them to other areas and

forgets where he puts them, so I interfere with that,

because I am tired of playing the witch hunt to find

things and this makes him combative too. Also, if he

forgets he already took his pills and wants more and

insists I need to give him his pills, he is combative.

First, you must deduct if the combativeness is due to

a UTI, which is very common with our LOs, or other

infections or if the LO just had surgery, it could be

due to anesthetics or medications. If the LO is

typically reacting to things that make them combative,

such as my husband, to cope I have learned that when

my husband is combative about the toilet, if I grab

his diapers and pants and pull them up quickly, before

he can hit me from behind him and get him in his

transport chair. (A transport chair is like a wheel

chair, but has 4 small wheels, instead of the two

large wheels and the person can not manipulate it,

they have to depend on someone to push it or they use

their feet to push and get around . Also, it is very

light to get it into a car) Anyway, once I get him out

of the bathroom and into another room and try again in

about 5 minutes, he forgets about he doesn't recognize

a toilet and will then use the toilet. Things can turn

around so fast, so I found if I give it a rest and

return a few minutes later, it usually works. When he

wants to be independent, but safety is involved I have

put a dead bolt on the door, so he can not escape when

no one is assisting him. He can not figure out how to

open it. Or if it is other issues I try to distract

him with something else to get him out of the

situation and if he wants medication, because he

forgot he already had his medication, I give him a

vitamin pill in place of it and he doesn't know the

difference. When he is in his tearing everything out

of drawers and closet frenzy, I have a box for him to

put the things in and tell him we will put them in a

place where you want them after you get them all in

the box and then he is willing to help me put them

back to where they belong, because the box distracts

him from putting the things in other areas.

These are things I have found to help me cope, instead

of the battles and the aggressiveness. It doesn't

always work and there is still the stresses, but it

mostly works and is helpful and that is a relief when

it works. Your MIL will have to find coping skills

that can help her distract the situation or play a

game of strategy and be a step ahead of your FIL or

even as has been said here many times little white

lies, because it is for a safety issue and sometimes

has to be done. Your MIL can not think realistically,

she has to get into your FILs world or she will not

survive. Your FIL can no longer reason and she has to

do that for him and stop following what he says when

it is not safe for him, but make the situation safe

for him with strategy. It is very wearing, but there

are ways to cope. I hope this has helped somewhat.

With LBD, not everyone follows the same pattern, that

is what is so frustrating. Your MIL has a long ways to

go, so she has to start picking up coping skills that

work for her. Generally, LBD is 5 - 7 years, of course

not everyone is going to be right on those years, some

may be earlier and some later. But that is the general

amount of years for LBD.

Take care April.........Jan

--- aswest1021 wrote:

> Thanks for clearing that up, Jan. Wonder why

> smelling smoke is a

> common hallucination? Evidently, my FIL has had

> that before. Also,

> is my FIL's combativeness a symptom of the disease

> or is it a

> reaction to something? I know it really scared my

> MIL. Are there

> ways to avoid it happening again in the future?

>

> April

>

>

>

>

> > > >

> > > > Oh dear April, it's all so typical here. I

> think

> > > your

> > > > FIL slept until noon, because your MIL gave

> him

> > > the

> > > > extra dosage of Sominex the night before,

> because

> > > he

> > > > was threatening her for it. I am not sure if

> > > Sominex

> > > > comes in pill form or liquid, but one of the

> > > tricks

> > > > here when our LOs threaten to have an extra

> dosage

> > > of

> > > > medication is to give them a Tic Tac or

> Vitamin

> > > Pill

> > > > in place of it and they usually don't know the

> > > > difference. If it's liquid, substitute it

> with

> > > honey

> > > > or something liquidy. I'm not sure how a LO

> would

> > > > react to Sominex, it could make them very

> > > confused,

> > > > since they are highly sensitive to medications

> and

> > > > your FIL was reacting to the first dosage and

> that

> > > is

> > > > why he was threatening. There are only certain

> > > > medications for sleeping that are compatible

> for

> > > LBD.

> > > > It is a good thing that the guns are locked

> up. I

> > > sure

> > > > hope that you have all made sure that they are

> and

> > > any

> > > > other weapons he can use, such as cuttlery in

> the

> > > > house or anything that can be used as a

> weapon. It

> > > is

> > > > not a joke that they can use these things,

> because

> > > > they are not in their right mind. It should be

> > > taken

> > > > very seriously.

> > > > Also, one of the symptoms of LBD besides

> visual

> > > > hallucinations is smell and smelling smoke is

> one

> > > of

> > > > the common hallucinations. Your mother needs

> to

> > > play

> > > > along with it. My husband also smells smoke

> from

> > > time

> > > > to time and I have dialed POPCORN that gives

> the

> > > time

> > > > on the phone and pretended to talk with the

> fire

> > > dept.

> > > > about it. That is all you need to do to make

> them

> > > feel

> > > > something has been done. They can not reason

> about

> > > the

> > > > fire truck showing up. My husband doesn't care

> > > after

> > > > the call has been made. Others have other

> things

> > > that

> > > > they do, I actually read where someone went on

> the

> > > > roof with a hose to relieve the LO. Your

> mother

> > > will

> > > > have to act some things out. I know it sounds

> > > weird,

> > > > but sometimes to alleviate the urgency for

> them,

> > > you

> > > > need to become a part of the hallucination to

> put

> > > an

> > > > end to it. Also, there is taste, touch and

> hearing

> > > > hallucinations too, besides the visual

> > > hallucinations.

> > > >

> > > > April, it is only going to get worse before it

>

=== message truncated ===

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

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