Jump to content
RemedySpot.com

Re: New to Lewyville

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hi Alyssa...Welcome to the group. I'm so sorry you have to join us though. I

am a fledgling member myself and am so impressed by the information that the

" professional " members can provide. I am sure they will be much more helpful

since many have their loved ones living with them as well. I could not handle

having my father (age 58) living with me. Like you, I have young children at

home (4 to be exact) and I am only (can I say " only? " ) 37.

If it makes you feel better to know you are not alone, then I am here for you.

My dad went through almost exactly your dad's situation last summer. I can

entirely relate to your frustration and anger. I lost my sister three years ago

to breast cancer and my dad was divorced, so I am also the main person

responsible for my dad. For months he went from emergency rooms to a mental

hospital where they drugged him up so badly he almost died. Luckily he came out

of it but it took weeks for the medications to wear off. Currently he is on

Seroquel 3x a day and has had good luck with it. His hallucinations and

delusions have seemed to have gone away. He's still confused and often " child

like " but he is not terrified as he was before of " the strangers in his house

trying to take him to the dark side. " While I tried to keep him near me in CA,

he simply couldn't afford it. My uncle (his brother) was kind enough to take

him into his Washington home. I warned my uncle that my

dad is high maintenance and can be tiring. It's been 4 months and my uncle is

seeing how hard it is...and my uncle is 55 and has NO children in the house! He

and my aunt are contemplating putting my dad in assisted living in Oregon. It's

just so hard.

To make your situation worse, you are mad at your dad for your childhood. You

are thinking " Why should I bother taking care of you? " but all the knowing you

should do it. I totally understand. My dad wasn't a bad dad, but he was a very

selfish and materialistic man. He left my mom when I was 12 and I didn't see

him very often for years after that. When I was running all over CA trying to

take care of my dad's belongings, dogs, finances, health, dr. appointments,

insurance, medications, etc...I got a little resentful. Then it would be when

he was having tender moments (very common, I think) that he would cry and tell

me how much he loved me and how he was scared...and I would forgot about it all.

I am not sure if your dad is there yet, but he may get to that point. But it

will change again and he will ask me where all his money is (implying that I'm

taking it..a joke, considering there is so little to take) and why I won't let

him drive...etc..The emotions roller

coaster. It is very tiring.

You definitely need to get your dad into a nursing home or assisted living

facility. I would not recommend having him live with you with two small kids at

home. It's already too stressful just with the kids. Is there anything even an

hour from you? Since you said local places had huge waiting lists? How far is

Florida from your home in Virginia? Could you stay where you are but move him

there? Or is that too far? Is there anyone else around to help? Could you

place him farther away and still put him on all the waiting lists of the closer

facilities? Then you could move him once a room is available? I know this is

the most challenging part of it all. I had a horrible time trying to place my

dad...not only was he aggressive but he was too young. No facility wanted him.

Luckily it has worked out so far and he's not aggressive anymore.

From what I've learned from this wonderful group is that LBD is rather

unpredictable. It has no definite stages and often patients can become worse

then better then worse, etc..I've been told to look at stage of Alzheimer's for

general expectations, but that again, LBD, is often not as predictable. While

my dad is probably mid-way through it...He's still got full body control, walks

with no assistance, but is rather confused and emotional. I believe he will get

worse. First his body will start to break down...possible tripping and falling.

Then more confused. Then large body functions slow to no walking, unable to

dress and little speech. Then no speaking or ability to feed self and

eventually death. Again, I'm no expert as many on this group are. Just an idea

as to what you may expect.

I would ask another doctor about the seroquel. It has worked for my dad. And

get another doctor if you can. Maybe another neurologist, general physician and

a psychiatrist?? It was a psychiatrist in one of the nursing homes that really

helped me understand the disease better...plus, this group helps a lot too.

I am not sure if I helped at all. Like I said, I'm new to the group. My dad

was just diagnosed in July of 2005 (although I think he's had it for at least 3

years). I don't often post emails because I am not sure how much I know compare

to others, but I can clearly relate to everyone's frustrations, yet love for

their family.

Take Care, in CA

Alyssa Greek wrote:

Hello everyone,

I just joined this group a couple of days ago and I am so glad to have

finally found some other people who are dealing with this craziness too...My

name is Alyssa, I'm 33 years old and I have been taking care of my dad for the

last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and

Amantadine, was able to continue working and lived by himself until last April.

Then he started seeing aliens. I mean he really went off the deep end. He even

concocted this brilliant story to go along with the hallucinations about how

there was a parallel earth that was older than this one that we are on, and it

took 7 days to get there but the aliens wouldn't let him go there for whatever

reason...Then he insisted that they were taking my car apart in the driveway and

were installing a rocket launcher in my trunk, he even picked up a floor lamp

and held it like it was a gun and told me to " stand back! This thing's got a

hell of a recoil! " The day before, he

actually held one of his best friends at gunpoint! (Yes, he had guns all around

at this time, he had been an avid hunter, and no, there are no weapons around

him now) but still, all this came out of the blue. We ended up having to commit

him, and he stayed in a psych ward for 21 days. We were told that it was just an

adverse reaction to the PD meds he had been on, and when he got out, he seemed

better, mentally at least- he could barely walk from the myriad of drugs they

had tried out on him. I took him to live with me in Florida and subsequently

lost my job and had to quit school because of this.

Will somebody please write to me and tell me if this is the norm? Dad's

neurologist doesn't give a flip about him, never returns my calls, he's

apparently one of those Dr.s who are in it for the $$. He just recently

re-diagnosed dad with LBD about a month ago, and when I asked him what that

meant (ie.- how is it treated, what can we expect?) he just looked at me and

shook his head and said that it would be ugly.

I feel like I'm losing my mind too, I have two children, 4 and 10, and

taking dad on in the first place was hard because he was very abusive to my

sister and I when we were young. He was a real cad, cheated on my mother for the

last 10 years of their marriage, and my family thinks I'm nuts for taking him

in, they really don't want anything much to do with him, they feel like he is

reaping what he sowed, or that it's Karma or something of the like but there is

nobody else to do it and he is my father....

Right now, I'm about to go pick him up from a mental hospital because

his insurance won't pay for him to stay any longer (he's been there a week

today). And get this- the people there didn't even know what Lewy Body Dementia

is...I had to write it down for the nurse and tell her to Google it and to make

sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly

says on their website, NOT to give it to elderly patients who are sufferring

from dementia related psychosis, and every other DLB website that I have seen

has had some sort of precautionary statement warning that DLB patients are

especially at risk of severe adverse reactions to neuroleptics. I tell this to

the Dr.at the hospital and he says that Seroquel is the drug that they are

authorized to use to treat hallucinations and that his psychiatrist can monitor

how the drug will affect him from here on out. Do any of you know anything about

the effectiveness (or lack thereof) of Seroquel? Any

suggestions would be appreciated. I also found out today that to get him into a

nursing home or asst living facility around here, I would need to get on a

waiting list and right now the wait is more than a year. (I live in very very

rural Courtland, VA) I'm thinking of moving back to FL where there are a lot

more nursing homes and such...

You are all in my prayers.

Alyssa Greek

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Link to comment
Share on other sites

Guest guest

Dear Alyssa,

I think it is very important for you to take into account how your father's

illness will affect your young children. While it is admirable of you to want

to be of some help, you might be wise to listen to your family members about

this. You can be an advocate without becoming a caregiver, and often you can be

much more effective in this role. One thing most of us caregivers don't have is

perspective. We are often too close to the problem to handle it well. Your

father will be eligible for programs more immediately if he has no assets, and

no one to jump in and take responsibility for him. You are wise to find

information through the website on drugs and ask advice here, but to try to take

him on yourself, is going to take you down a road of no return. You can still

have a merciful heart and love him because he is your father, without

sacrificing your family in the process. Those kids need you.

New to Lewyville

Hello everyone,

I just joined this group a couple of days ago and I am so glad to have

finally found some other people who are dealing with this craziness too...My

name is Alyssa, I'm 33 years old and I have been taking care of my dad for the

last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and

Amantadine, was able to continue working and lived by himself until last April.

Then he started seeing aliens. I mean he really went off the deep end. He even

concocted this brilliant story to go along with the hallucinations about how

there was a parallel earth that was older than this one that we are on, and it

took 7 days to get there but the aliens wouldn't let him go there for whatever

reason...Then he insisted that they were taking my car apart in the driveway and

were installing a rocket launcher in my trunk, he even picked up a floor lamp

and held it like it was a gun and told me to " stand back! This thing's got a

hell of a recoil! " The day before, he

actually held one of his best friends at gunpoint! (Yes, he had guns all

around at this time, he had been an avid hunter, and no, there are no weapons

around him now) but still, all this came out of the blue. We ended up having to

commit him, and he stayed in a psych ward for 21 days. We were told that it was

just an adverse reaction to the PD meds he had been on, and when he got out, he

seemed better, mentally at least- he could barely walk from the myriad of drugs

they had tried out on him. I took him to live with me in Florida and

subsequently lost my job and had to quit school because of this.

Will somebody please write to me and tell me if this is the norm?

Dad's neurologist doesn't give a flip about him, never returns my calls, he's

apparently one of those Dr.s who are in it for the $$. He just recently

re-diagnosed dad with LBD about a month ago, and when I asked him what that

meant (ie.- how is it treated, what can we expect?) he just looked at me and

shook his head and said that it would be ugly.

I feel like I'm losing my mind too, I have two children, 4 and 10, and

taking dad on in the first place was hard because he was very abusive to my

sister and I when we were young. He was a real cad, cheated on my mother for the

last 10 years of their marriage, and my family thinks I'm nuts for taking him

in, they really don't want anything much to do with him, they feel like he is

reaping what he sowed, or that it's Karma or something of the like but there is

nobody else to do it and he is my father....

Right now, I'm about to go pick him up from a mental hospital because

his insurance won't pay for him to stay any longer (he's been there a week

today). And get this- the people there didn't even know what Lewy Body Dementia

is...I had to write it down for the nurse and tell her to Google it and to make

sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly

says on their website, NOT to give it to elderly patients who are sufferring

from dementia related psychosis, and every other DLB website that I have seen

has had some sort of precautionary statement warning that DLB patients are

especially at risk of severe adverse reactions to neuroleptics. I tell this to

the Dr.at the hospital and he says that Seroquel is the drug that they are

authorized to use to treat hallucinations and that his psychiatrist can monitor

how the drug will affect him from here on out. Do any of you know anything about

the effectiveness (or lack thereof) of Seroquel? Any

suggestions would be appreciated. I also found out today that to get him into

a nursing home or asst living facility around here, I would need to get on a

waiting list and right now the wait is more than a year. (I live in very very

rural Courtland, VA) I'm thinking of moving back to FL where there are a lot

more nursing homes and such...

You are all in my prayers.

Alyssa Greek

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

How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates.

Link to comment
Share on other sites

Guest guest

,

You wrote an excellent letter to, Alyssa. You told your story, and that is

what we are all looking for. We are learning from each other's experiences.

I am fairly new to the List and I do welcome both of you.

I appreciated your input very much.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 4/11/2006 1:49:25 AM Central Daylight Time,

cmarzocco@... writes:

Hi Alyssa...Welcome to the group. I'm so sorry you have to join us though.

I am a fledgling member myself and am so impressed by the information that

the " professional " members can provide. I am sure they will be much more

helpful since many have their loved ones living with them as well. I could not

handle having my father (age 58) living with me. Like you, I have young

children at home (4 to be exact) and I am only (can I say " only? " ) 37.

If it makes you feel better to know you are not alone, then I am here for

you. My dad went through almost exactly your dad's situation last summer. I

can entirely relate to your frustration and anger. I lost my sister three

years ago to breast cancer and my dad was divorced, so I am also the main

person

responsible for my dad. For months he went from emergency rooms to a mental

hospital where they drugged him up so badly he almost died. Luckily he came

out of it but it took weeks for the medications to wear off. Currently he is

on Seroquel 3x a day and has had good luck with it. His hallucinations and

delusions have seemed to have gone away. He's still confused and often

" child like " but he is not terrified as he was before of " the strangers in his

house trying to take him to the dark side. " While I tried to keep him near me

in CA, he simply couldn't afford it. My uncle (his brother) was kind enough

to take him into his Washington home. I warned my uncle that my

dad is high maintenance and can be tiring. It's been 4 months and my uncle

is seeing how hard it is...and my uncle is 55 and has NO children in the

house! He and my aunt are contemplating putting my dad in assisted living in

Oregon. It's just so hard.

To make your situation worse, you are mad at your dad for your childhood.

You are thinking " Why should I bother taking care of you? " but all the

knowing you should do it. I totally understand. My dad wasn't a bad dad, but

he

was a very selfish and materialistic man. He left my mom when I was 12 and I

didn't see him very often for years after that. When I was running all over

CA trying to take care of my dad's belongings, dogs, finances, health, dr.

appointments, insurance, medications, etc...I got a little resentful. Then it

would be when he was having tender moments (very common, I think) that he

would cry and tell me how much he loved me and how he was scared...and I would

forgot about it all. I am not sure if your dad is there yet, but he may get

to that point. But it will change again and he will ask me where all his

money is (implying that I'm taking it..a joke, considering there is so little

to

take) and why I won't let him drive...etc..The emotions roller

coaster. It is very tiring.

You definitely need to get your dad into a nursing home or assisted living

facility. I would not recommend having him live with you with two small kids

at home. It's already too stressful just with the kids. Is there anything

even an hour from you? Since you said local places had huge waiting lists?

How far is Florida from your home in Virginia? Could you stay where you are

but move him there? Or is that too far? Is there anyone else around to help?

Could you place him farther away and still put him on all the waiting lists

of the closer facilities? Then you could move him once a room is available?

I know this is the most challenging part of it all. I had a horrible time

trying to place my dad...not only was he aggressive but he was too young. No

facility wanted him. Luckily it has worked out so far and he's not aggressive

anymore.

From what I've learned from this wonderful group is that LBD is rather

unpredictable. It has no definite stages and often patients can become worse

then

better then worse, etc..I've been told to look at stage of Alzheimer's for

general expectations, but that again, LBD, is often not as predictable. While

my dad is probably mid-way through it...He's still got full body control,

walks with no assistance, but is rather confused and emotional. I believe he

will get worse. First his body will start to break down...possible tripping

and falling. Then more confused. Then large body functions slow to no

walking, unable to dress and little speech. Then no speaking or ability to

feed

self and eventually death. Again, I'm no expert as many on this group are.

Just an idea as to what you may expect.

I would ask another doctor about the seroquel. It has worked for my dad.

And get another doctor if you can. Maybe another neurologist, general

physician and a psychiatrist?? It was a psychiatrist in one of the nursing

homes

that really helped me understand the disease better...plus, this group helps a

lot too.

I am not sure if I helped at all. Like I said, I'm new to the group. My

dad was just diagnosed in July of 2005 (although I think he's had it for at

least 3 years). I don't often post emails because I am not sure how much I

know

compare to others, but I can clearly relate to everyone's frustrations, yet

love for their family.

Take Care, in CA

Alyssa Greek wrote:

Hello everyone,

I just joined this group a couple of days ago and I am so glad to have

finally found some other people who are dealing with this craziness too...My

name

is Alyssa, I'm 33 years old and I have been taking care of my dad for the

last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex

and

Amantadine, was able to continue working and lived by himself until last

April. Then he started seeing aliens. I mean he really went off the deep end.

He

even concocted this brilliant story to go along with the hallucinations

about how there was a parallel earth that was older than this one that we are

on,

and it took 7 days to get there but the aliens wouldn't let him go there for

whatever reason...Then he insisted that they were taking my car apart in the

driveway and were installing a rocket launcher in my trunk, he even picked

up a floor lamp and held it like it was a gun and told me to " stand back!

This thing's got a hell of a recoil! " The day before, he

actually held one of his best friends at gunpoint! (Yes, he had guns all

around at this time, he had been an avid hunter, and no, there are no weapons

around him now) but still, all this came out of the blue. We ended up having to

commit him, and he stayed in a psych ward for 21 days. We were told that it

was just an adverse reaction to the PD meds he had been on, and when he got

out, he seemed better, mentally at least- he could barely walk from the myriad

of drugs they had tried out on him. I took him to live with me in Florida

and subsequently lost my job and had to quit school because of this.

Will somebody please write to me and tell me if this is the norm? Dad's

neurologist doesn't give a flip about him, never returns my calls, he's

apparently one of those Dr.s who are in it for the $$. He just recently

re-diagnosed

dad with LBD about a month ago, and when I asked him what that meant (ie.- how

is it treated, what can we expect?) he just looked at me and shook his head

and said that it would be ugly.

I feel like I'm losing my mind too, I have two children, 4 and 10, and taking

dad on in the first place was hard because he was very abusive to my sister

and I when we were young. He was a real cad, cheated on my mother for the

last 10 years of their marriage, and my family thinks I'm nuts for taking him

in, they really don't want anything much to do with him, they feel like he is

reaping what he sowed, or that it's Karma or something of the like but there

is nobody else to do it and he is my father....

Right now, I'm about to go pick him up from a mental hospital because his

insurance won't pay for him to stay any longer (he's been there a week today).

And get this- the people there didn't even know what Lewy Body Dementia is...I

had to write it down for the nurse and tell her to Google it and to make

sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly

says on their website, NOT to give it to elderly patients who are sufferring

from dementia related psychosis, and every other DLB website that I have seen

has had some sort of precautionary statement warning that DLB patients are

especially at risk of severe adverse reactions to neuroleptics. I tell this to

the Dr.at the hospital and he says that Seroquel is the drug that they are

authorized to use to treat hallucinations and that his psychiatrist can monitor

how the drug will affect him from here on out. Do any of you know anything

about the effectiveness (or lack thereof) of Seroquel? Any

suggestions would be appreciated. I also found out today that to get him

into a nursing home or asst living facility around here, I would need to get on

a waiting list and right now the wait is more than a year. (I live in very

very rural Courtland, VA) I'm thinking of moving back to FL where there are a

lot more nursing homes and such...

You are all in my prayers.

Alyssa Greek

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Non-text portions of this message have been removed]

Link to comment
Share on other sites

Guest guest

Alyssa - Welcome to the board. You're on the right track, since you

found this board. Congrats! :)

You sure sound like you have your hands full. I hope this board will

help lead you in the direction that is best for you & your dad.

To relieve some of your fears - Seroquil is the OK drug for those

with LBD. You're correct with what you read of the warnings about

neuroleptics - but Seroquil is the weakest of them all and most of us

here will agree that's it's OK for our LO and to help with

hallucinations. With that said, some of our LOs are super sensitive

to drugs - my mother included - Risperidone was a big no-no for my

mother, and I actually saw improvement when the small amount of

Seroquil was removed.

It seems all of our LOs are different in regards to what drugs they

take - which makes this disease difficult to handle...

I just posted my mom's story on the Files section of the board -

under Members Profiles... Maybe the information can help you...

Maybe the following sites can help you find placement:

http://www.aplaceformom.com/default.htm

http://www.carepathways.com/?home=yes

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy)

>

> Hello everyone,

>

> I just joined this group a couple of days ago and I am so

glad to have finally found some other people who are dealing with

this craziness too...My name is Alyssa, I'm 33 years old and I have

been taking care of my dad for the last year. He was diagnosed 3

years ago with PD, and was doing ok on Miripex and Amantadine, was

able to continue working and lived by himself until last April. Then

he started seeing aliens. I mean he really went off the deep end. He

even concocted this brilliant story to go along with the

hallucinations about how there was a parallel earth that was older

than this one that we are on, and it took 7 days to get there but the

aliens wouldn't let him go there for whatever reason...Then he

insisted that they were taking my car apart in the driveway and were

installing a rocket launcher in my trunk, he even picked up a floor

lamp and held it like it was a gun and told me to " stand back! This

thing's got a hell of a recoil! " The day before, he

> actually held one of his best friends at gunpoint! (Yes, he had

guns all around at this time, he had been an avid hunter, and no,

there are no weapons around him now) but still, all this came out of

the blue. We ended up having to commit him, and he stayed in a psych

ward for 21 days. We were told that it was just an adverse reaction

to the PD meds he had been on, and when he got out, he seemed better,

mentally at least- he could barely walk from the myriad of drugs they

had tried out on him. I took him to live with me in Florida and

subsequently lost my job and had to quit school because of this.

> Will somebody please write to me and tell me if this is the

norm? Dad's neurologist doesn't give a flip about him, never returns

my calls, he's apparently one of those Dr.s who are in it for the $$.

He just recently re-diagnosed dad with LBD about a month ago, and

when I asked him what that meant (ie.- how is it treated, what can we

expect?) he just looked at me and shook his head and said that it

would be ugly.

> I feel like I'm losing my mind too, I have two children, 4

and 10, and taking dad on in the first place was hard because he was

very abusive to my sister and I when we were young. He was a real

cad, cheated on my mother for the last 10 years of their marriage,

and my family thinks I'm nuts for taking him in, they really don't

want anything much to do with him, they feel like he is reaping what

he sowed, or that it's Karma or something of the like but there is

nobody else to do it and he is my father....

> Right now, I'm about to go pick him up from a mental

hospital because his insurance won't pay for him to stay any longer

(he's been there a week today). And get this- the people there didn't

even know what Lewy Body Dementia is...I had to write it down for the

nurse and tell her to Google it and to make sure the Dr.s knew about

it. AND, thay have him on Seroquel, which explicitly says on their

website, NOT to give it to elderly patients who are sufferring from

dementia related psychosis, and every other DLB website that I have

seen has had some sort of precautionary statement warning that DLB

patients are especially at risk of severe adverse reactions to

neuroleptics. I tell this to the Dr.at the hospital and he says that

Seroquel is the drug that they are authorized to use to treat

hallucinations and that his psychiatrist can monitor how the drug

will affect him from here on out. Do any of you know anything about

the effectiveness (or lack thereof) of Seroquel? Any

> suggestions would be appreciated. I also found out today that to

get him into a nursing home or asst living facility around here, I

would need to get on a waiting list and right now the wait is more

than a year. (I live in very very rural Courtland, VA) I'm thinking

of moving back to FL where there are a lot more nursing homes and

such...

> You are all in my prayers.

> Alyssa Greek

>

>

> ---------------------------------

> How low will we go? Check out Yahoo! Messenger's low PC-to-Phone

call rates.

>

>

Link to comment
Share on other sites

Guest guest

alyssa,

welcome to our family although it saddens me that you had to find us. feel free

to ask any question, complain, yell scream or whatever you need to do to bake

live easier for him or for you.

i shocked my family also by taking care of my dad, my dad was teh typical

miltary person with a woman in every port. life was ery bad when lewyville was

cting out. he treated me like i was his whore to pimp out. it iwas awful, but

being an only child it was hard to just turn my back to him. life brings us all

different sorts of things or obstacles in our paths. i respect you for what you

are trying to do, i know it is horrible to care for someone you do not respect.

we took care of my dad for 2 and 1/2 years before he died and looking back i

have no regrets, we had to put dad in the nh after he broke his hip and then

kept popping it out of the socket i was unable to care for him at home anymore,

it was very difficult decision but the right one nevertheless. good luck and

hugs, sharon m

Date: 2006/04/10 Mon PM 06:53:42 EDT

To: LBDcaregivers

Subject: New to Lewyville

Hello everyone,

I just joined this group a couple of days ago and I am so glad to have

finally found some other people who are dealing with this craziness too...My

name is Alyssa, I'm 33 years old and I have been taking care of my dad for the

last year. He was diagnosed 3 years ago with PD, and was doing ok on Miripex and

Amantadine, was able to continue working and lived by himself until last April.

Then he started seeing aliens. I mean he really went off the deep end. He even

concocted this brilliant story to go along with the hallucinations about how

there was a parallel earth that was older than this one that we are on, and it

took 7 days to get there but the aliens wouldn't let him go there for whatever

reason...Then he insisted that they were taking my car apart in the driveway and

were installing a rocket launcher in my trunk, he even picked up a floor lamp

and held it like it was a gun and told me to " stand back! This thing's got a

hell of a recoil! " The day before, he

actually held one of his best friends at gunpoint! (Yes, he had guns all around

at this time, he had been an avid hunter, and no, there are no weapons around

him now) but still, all this came out of the blue. We ended up having to commit

him, and he stayed in a psych ward for 21 days. We were told that it was just an

adverse reaction to the PD meds he had been on, and when he got out, he seemed

better, mentally at least- he could barely walk from the myriad of drugs they

had tried out on him. I took him to live with me in Florida and subsequently

lost my job and had to quit school because of this.

Will somebody please write to me and tell me if this is the norm? Dad's

neurologist doesn't give a flip about him, never returns my calls, he's

apparently one of those Dr.s who are in it for the $$. He just recently

re-diagnosed dad with LBD about a month ago, and when I asked him what that

meant (ie.- how is it treated, what can we expect?) he just looked at me and

shook his head and said that it would be ugly.

I feel like I'm losing my mind too, I have two children, 4 and 10, and

taking dad on in the first place was hard because he was very abusive to my

sister and I when we were young. He was a real cad, cheated on my mother for the

last 10 years of their marriage, and my family thinks I'm nuts for taking him

in, they really don't want anything much to do with him, they feel like he is

reaping what he sowed, or that it's Karma or something of the like but there is

nobody else to do it and he is my father....

Right now, I'm about to go pick him up from a mental hospital because

his insurance won't pay for him to stay any longer (he's been there a week

today). And get this- the people there didn't even know what Lewy Body Dementia

is...I had to write it down for the nurse and tell her to Google it and to make

sure the Dr.s knew about it. AND, thay have him on Seroquel, which explicitly

says on their website, NOT to give it to elderly patients who are sufferring

from dementia related psychosis, and every other DLB website that I have seen

has had some sort of precautionary statement warning that DLB patients are

especially at risk of severe adverse reactions to neuroleptics. I tell this to

the Dr.at the hospital and he says that Seroquel is the drug that they are

authorized to use to treat hallucinations and that his psychiatrist can monitor

how the drug will affect him from here on out. Do any of you know anything about

the effectiveness (or lack thereof) of Seroquel? Any

suggestions would be appreciated. I also found out today that to get him into a

nursing home or asst living facility around here, I would need to get on a

waiting list and right now the wait is more than a year. (I live in very very

rural Courtland, VA) I'm thinking of moving back to FL where there are a lot

more nursing homes and such...

You are all in my prayers.

Alyssa Greek

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...