Re: Scared sick!!!!!!!!!1

[Guest guest]

In a message dated 7/15/2006 11:00:37 PM Central Daylight Time,

boydsplace@... writes:

Hello ,

My mother started with a shuffling walk starting about 6 months ago

and has gotten a little worse since. She had hallucinations start

about 4 weeks ago and got worse over a few days until she called me

one evening terrified that there were teen age kids in her house.

Bill, my husband had hallucinations early on. He was given Aricept, which

helped in the memory and activity area for about a year. He was diagnosed as

having Alzheimer's by a neurologist, but we found a very good

Geriatric/Psychiatrist and he diagnosed Lewey Body Dementia. Now he is on

Razadyne. Started

slow, and is working up on the dosage. But, the Doctor's thinking on any

medication with LBD is that " less is more " This medicine helps curb

Hallucinations.

He is also on Zoloft to help curb anxiety and keep him calm. Both are

working very well. You do have tobe careful of medications with LBD. Some can

send

the patient into a downhill irriversable spiral, that they can't recover

from. My husband was given Risperdal, and I thought it was going to kill him,

so

I slowly backed him off the medication, before it was too late, then found an

excellent doctor.

She was sent (Kaiser) to a Psych for assessment as she was not

sleeping at all for a month and the doctor though it might be

Geriatric Depression. The Psych prescribed seroquel and we started her

on that. He also sent her to a Neurologist. Over two days the

hallucinations stopped and she has slept good all night. The

neurologist then diagnosed her with Lewy Body after some test. He

suggested maybe trying Sinemet for the walking problem (not really

terrible, but has no stamina). He said that could bring back the

hallucinations and it might not even help. We picked up the

prescription but never gave it to her. The poor thing also has

cataracts in her eyes and is waiting for a surgery to help that on the

27th of July, then a month later for the other eye. We did not give

her the Sinemet as we were more concerned about her hallucinations

than the walking at this time. We went back to the Psych (follow up)

and he agreeded we should wait on the Sinemet and keep using the low

dosage of Seriquil at night until after the surgery, then come back to

see him? She does have some short term memory lose that seems to be

getting worse (maybe).

My main concern is, is she getting the right medicines now? Are there

other meds better out there?

I am a 53 year. I am her only caregiver mostly as my only brother has

Parkenson's also, but is doing good (12 years). My brother is retired

and has been living with her for 2 weeks but had to leave for a few

weeks on a planed vacation with his family. He is returning soon and I

have been with her for almost two weeks. He can stay with her for the

summer, but lives in a near by state and should (and must) go home

also. I live near by but have to work for a living and I also have a

family.

I'm so sorry for wasting all your time, but I am so scared about all

of this my stomach is almost always in a knot. I'm not sure what is

the best for my Mom at this time. I'm not even sure I can leave her

alone, and that is a problem. She says " you can go off to work and

I'll be OK " but then she seems " klingy " other times and that is

concerning. She can get around and make herself breakfast and lunch.

Dinner she doesn't want to make anymore and wants to eat pre made

dinners (good ones like Healthy Choice ect, but still pre made). But I

don't know what to do here. I don't really want to remove here from

her house (paid for) and into a care facility?

I hear you about being scared. It's difficult to know what to do. Can you

get trusted help to come in and care for her? Yes, as far as " klingy " goes, my

Dear One follows me all over the house. That is to be expected, because they

are afraid too.

Be sure to have her paper work in order Yesterday! A Will, Power of Attorney

for her legal affairs, Directive to physicians, Power of Attorney for her

medical care. There may be a couple of more that I can't think of right now.

You will learn as you go along, and you will not be as scared of the whole

thing. We got the proper papers from our hospital, and from our Bank.

I don't know……This is too much too fast for me!

Any helpful thought?

Thank you!

Bill B.

My very best to you,

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

[Guest guest]

I don't know why my different print didn't show up in Bill's letter???

Imogene

In a message dated 7/15/2006 11:33:53 PM Central Daylight Time,

Iward27663@... writes:

In a message dated 7/15/2006 11:00:37 PM Central Daylight Time,

boydsplace@... writes:

Hello ,

My mother started with a shuffling walk starting about 6 months ago

and has gotten a little worse since. She had hallucinations start

about 4 weeks ago and got worse over a few days until she called me

one evening terrified that there were teen age kids in her house.

Bill, my husband had hallucinations early on. He was given Aricept, which

helped in the memory and activity area for about a year. He was diagnosed

as

having Alzheimer's by a neurologist, but we found a very good

Geriatric/Psychiatrist and he diagnosed Lewey Body Dementia. Now he is on

Razadyne. Started

slow, and is working up on the dosage. But, the Doctor's thinking on any

medication with LBD is that " less is more " This medicine helps curb

Hallucinations.

He is also on Zoloft to help curb anxiety and keep him calm. Both are

working very well. You do have tobe careful of medications with LBD. Some

can send

the patient into a downhill irriversable spiral, that they can't recover

from. My husband was given Risperdal, and I thought it was going to kill

him, so

I slowly backed him off the medication, before it was too late, then found

an

excellent doctor.

She was sent (Kaiser) to a Psych for assessment as she was not

sleeping at all for a month and the doctor though it might be

Geriatric Depression. The Psych prescribed seroquel and we started her

on that. He also sent her to a Neurologist. Over two days the

hallucinations stopped and she has slept good all night. The

neurologist then diagnosed her with Lewy Body after some test. He

suggested maybe trying Sinemet for the walking problem (not really

terrible, but has no stamina). He said that could bring back the

hallucinations and it might not even help. We picked up the

prescription but never gave it to her. The poor thing also has

cataracts in her eyes and is waiting for a surgery to help that on the

27th of July, then a month later for the other eye. We did not give

her the Sinemet as we were more concerned about her hallucinations

than the walking at this time. We went back to the Psych (follow up)

and he agreeded we should wait on the Sinemet and keep using the low

dosage of Seriquil at night until after the surgery, then come back to

see him? She does have some short term memory lose that seems to be

getting worse (maybe).

My main concern is, is she getting the right medicines now? Are there

other meds better out there?

I am a 53 year. I am her only caregiver mostly as my only brother has

Parkenson's also, but is doing good (12 years). My brother is retired

and has been living with her for 2 weeks but had to leave for a few

weeks on a planed vacation with his family. He is returning soon and I

have been with her for almost two weeks. He can stay with her for the

summer, but lives in a near by state and should (and must) go home

also. I live near by but have to work for a living and I also have a

family.

I'm so sorry for wasting all your time, but I am so scared about all

of this my stomach is almost always in a knot. I'm not sure what is

the best for my Mom at this time. I'm not even sure I can leave her

alone, and that is a problem. She says " you can go off to work and

I'll be OK " but then she seems " klingy " other times and that is

concerning. She can get around and make herself breakfast and lunch.

Dinner she doesn't want to make anymore and wants to eat pre made

dinners (good ones like Healthy Choice ect, but still pre made). But I

don't know what to do here. I don't really want to remove here from

her house (paid for) and into a care facility?

I hear you about being scared. It's difficult to know what to do. Can you

get trusted help to come in and care for her? Yes, as far as " klingy " goes,

my

Dear One follows me all over the house. That is to be expected, because

they

are afraid too.

Be sure to have her paper work in order Yesterday! A Will, Power of

Attorney

for her legal affairs, Directive to physicians, Power of Attorney for her

medical care. There may be a couple of more that I can't think of right now.

You will learn as you go along, and you will not be as scared of the whole

thing. We got the proper papers from our hospital, and from our Bank.

I don't know……This is too much too fast for me!

Any helpful thought?

Thank you!

Bill B.

My very best to you,

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

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

[Guest guest]

Hi Bill

Welcome to the best support group. I'm sorry you had to find us under these

circumstances but you came to the right place.

You were lucky her neurologist knew about Lewy Body and gave her the right

test. He is going to be your best ally. My advice to you is to keep a

journal on her actions. Anytime you see a change write it down. Bring the

journal

with you to the doctors. This will help both you and them regulate her

meds. It will also indicate what works and what doesn't. GO SLOW AND SMALL.

What I mean is start with small doses and work up if the med is working. It

sounds as if the Seroquel is working for your Mom. Mine couldn't take it.

If you think you're scared so is she. She knows something is wrong but not

sure what it is.

I had to explain to my Mom at least a dozen times what was wrong. She would

understand for a minute then forget again.

Educate yourself about Lewy Body. Knowledge is your best bet. There are a

lot of good links that explain Lewy Body and a lot of good advice. I don't

have a link at the bottom of my E-Mail because I don't know how to add them,

but

you will see it on the bottom of most of them. Take care of the legal forms

you need. Power of Atty for both financial and medical. A Living Will is

also important. Do you know her wishes? Look into your local agency of the

elderly for help. They can send you to the right people for assistance.

This group is here to support you and you have not bothered anyone. This

group is here to listen even if its just to vent. You can scream, holler,

laugh (yes I said laugh), or even cry and no one will think the worst of you.

There will be time when humor is best.

Take care of yourself first because you need to be strong on this journey

your Mother is taking.

Again I'm sorry you had to find us but glad you did. God Bless you and your

family,

Jacqui in Florida

[Guest guest]

I selected this paragrath from your letter to, Bill, Jacqui, because that is

just what I did the other night. I think I cried for a couple of hours.

Everything had just piled up and I let it come out. Tension has to be

released,

or bad nerves will erupt.

Imogene

In a message dated 7/16/2006 4:36:03 AM Central Daylight Time,

mamajacqui@... writes:

This group is here to support you and you have not bothered anyone. This

group is here to listen even if its just to vent. You can scream, holler,

laugh (yes I said laugh), or even cry and no one will think the worst of

you.

There will be time when humor is best.

[Guest guest]

Hi Bill. Welcome to the board. Congratulation on finding us --

because you are at the right place. Jacqui gave you some great

advice. I agree with all that she wrote. You're very lucky to have

found a doctor who knows about LBD (most of us here have had doctors

who don't know what the disease is and in turn received the wrong

meds which can be deadly or at least lead to rapid decline).

Some more advice: If staying at her home is what you feel is best

then there are many things you should do to make sure that she is

safe.

* Contact Elder Affairs in your community to start the ball rolling

to request help. Someone will visit your mom's home and review it and

see what needs to be done to make it safe. (E.g. handle bars in the

bathroom)

* You could get Meals on Wheels to deliver meals to your mom.

* Get your mom a " Lifeline " (the thing around her neck to press for

help should she fall)

* You should get your mom a caregiver. When I began this journey with

my mom we found caregivers to be with her during the day when she had

the most activities planned for herself (e.g. church, shopping) and

they were with her to make sure she doesn't fall. My mom too (at the

time) had the shuffling gait and she fell frequently.

* A home health aide to come and do laundry and clean. Or the same

aide can help your mom shower.

* In time, you may need to extend hours for the caregivers. Do your

homework now regarding caregivers (even up to 24 hour caregivers) vs.

an Assisted Living Facility that specialize in dementia. In the

beginning my mom just moved into a regular ALF and they don't provide

the help your mother will eventually need. Don't waste time - just go

to an ALF with dementia unit. Many have high function and low

function dementia areas.

* Definitely get the POA and health care proxy done.

* If you or your brother are handling the bills - go ahead and have

them mailed to your personal address (I wasted time with that too by

having them delivered to her ALF but it led to change of address

twice - a waste of time)

To answer your question YES your mom is on the correct meds. Both

Seroquil and Sinemet are being used by many on this board. But

everyone with this disease is different. My mother can't handle the

Seroquil or any anti-psychotics. But her hallucinations are not scary

so we don't worry about that. My mother declined rapid by receiving

the wrong meds and now in a wheelchair - so maybe Sinemet would help,

but Sinemet also can lead to more hallucinations too - so we don't

worry about that either. The big NO drugs are Haldol and Ativan.

Those drugs lead to RAPID DECLINE - so when your mom is going to the

hospital for her eyes make sure it's in her files that she is

ALLERGIC TO HALDOL AND ATIVAN (these drugs are used like candy in the

hospitals). Quoting from our files section of GOOD drugs " Our

neurologist very carefully said that for surgery Joe could have

Versed [used to make you drowsy and temporary] and Propofal as an

anesthetic. "

Visit the board there is tons of useful information there. I worked

hard in getting our Links Section made into a one-stop research /

shopping area (still a work in progress, but everything mentioned

above is there).

http://health.groups.yahoo.com/group/LBDcaregivers/links

Also my mom's story is on the board if you're interested in reading.

It's in the Files section. (also in the Files section is the list of

good meds / bad meds for those with LBD)

http://health.groups.yahoo.com/group/LBDcaregivers/files/

Also suggested reading and listings of referred doctors, etc. is

listing in the Database section.

http://health.groups.yahoo.com/group/LBDcaregivers/database

Glad you found us, Bill. We're here to help you in this journey.

; 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) and as of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

(See files, links, databases, photos of members, and search previous

posts)

[Guest guest]

Well,

I am helping with my Mom right now by myself. I'm not sure I really

need to be here all the time as she gets around pretty well right now.

She also has not had hallicunations in 4 weeks. She seems to get

nausia sometimes in the morning. Not all the time. Not sure what that is.

I'm taking my vacation right now to help out till my brother gets back

on Thrusday. He will stay the rest of the summer I guess. I'm living

with my mom right now.

" Scared sick " is the title of this topic. I seem to be having more

problems myself as I go through this problem the last week and a half.

I go through periods of relief when a doctor says it's going OK, but

return to my normal state of a big knot in my stomach most of the

time. I try to take her for a ride in the car when I can and that

relieves some of my and her tensions.

I guess all the uncertanty of medications etc, weight pretty heavy on

me. The biggest fear factor is what to do with her and how can we

possibly pay for " caregivers " on her income and ours. She owns a

pretty expensive house ($600,000 plus) but that is about it. If we

sell it, then where will we " have to " put her? All these questions are

really tearing me up. I guess this is my problem. I wish I knew if

anything was available from Medicare etc.

I really apreciate your comments that you have given so far. I really

can't tell you how much help it is just to vent a little. I'm not sure

how much it will help. I'm sure I'm not the only one out there!!

Thank you very very much!!

Bill

Scared

>

>

> This group is here to support you and you have not bothered anyone.

This

> group is here to listen even if its just to vent. You can scream,

holler,

> laugh (yes I said laugh), or even cry and no one will think the

worst of

> you.

> There will be time when humor is best.

>

>

>

>

>

>

>

[Guest guest]

Welcome Bill,

The thing to remember is that your not alone in this struggle. Your story

sounds a lot like mine. My father-in-law was diagnosed in January of this year

but we knew something was wrong back in 2004. They share a lot of similarities.

I'm sorry that you find yourself in Lewyville, but the caregivers here are

awesome. The best part is that several of these angels have experienced LBD

longer and know all the ins and outs of this dreaded disease.

Hang in there and when you feel uptight get online and we'll be here for you.

Ask what you will and NEVER think that you waste our time. We are here for each

other. That's the glory of this group.

Tori

Part-time caregiver to Dizz my FIL (father-in-law) diagnosed with LBD 1/06,

saw signs since 2004, kidney failure 2/06, NH (nursing home) 3/06 until kicked

out by insurance, currently at home driving MIL crazy! LOL He is also a

diabetic, history of prostate cancer, artificial spinxter implanted (device that

one must pinch in order to empty his bladder), just started Alpha- Lipoic Acid,

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

Yahoo! Music Unlimited - Access over 1 million songs.Try it free.

[Guest guest]

Bill,

I can tell you that you are not alone in feeling overwhelmed with

the decision making process and worrying about the outcome. Often

times we have to make them in the midst of a crisis and then the

stress is magnified.

I can tell you that your mother is very lucky to have a caring son

who is so concerned about her. Just imagine if she had to fend for

herself at this time. Try to keep in mind that as with the rest of

life, some decisions that you make may work out the first time, but

if not, you can always readjust and go to plan B...that is life.

There are no right or wrong answers. You are only trying to do what

you think is going to be the most workable solution.

It sounds like your mother is managing fairly well now. But as you

have said, it is important to try to figure out what your options

are.

We have all been down the road you are on and most are still on it.

With LBD, you do get some relief as at times, they stabilize...then

the roller coaster starts up again.

But if the end objective is to see that your LO is cared for and

safe, it helps put your things in perspective. (Although not always

so simple to make the decisions.) You are doing the best you can.

I hope you find peace along this journey.

Daughter of Bill, 91

>

> Well,

> I am helping with my Mom right now by myself. I'm not sure I really

> need to be here all the time as she gets around pretty well right

now.

> She also has not had hallicunations in 4 weeks. She seems to get

> nausia sometimes in the morning. Not all the time. Not sure what

that is.

>

> I'm taking my vacation right now to help out till my brother gets

back

> on Thrusday. He will stay the rest of the summer I guess. I'm

living

> with my mom right now.

>

> " Scared sick " is the title of this topic. I seem to be having more

> problems myself as I go through this problem the last week and a

half.

> I go through periods of relief when a doctor says it's going OK,

but

> return to my normal state of a big knot in my stomach most of the

> time. I try to take her for a ride in the car when I can and that

> relieves some of my and her tensions.

>

> I guess all the uncertanty of medications etc, weight pretty heavy

on

> me. The biggest fear factor is what to do with her and how can we

> possibly pay for " caregivers " on her income and ours. She owns a

> pretty expensive house ($600,000 plus) but that is about it. If we

> sell it, then where will we " have to " put her? All these questions

are

> really tearing me up. I guess this is my problem. I wish I knew if

> anything was available from Medicare etc.

>

> I really apreciate your comments that you have given so far. I

really

> can't tell you how much help it is just to vent a little. I'm not

sure

> how much it will help. I'm sure I'm not the only one out there!!

>

> Thank you very very much!!

>

> Bill

> Scared

>

>

>

> >

> >

> > This group is here to support you and you have not bothered

anyone.

> This

> > group is here to listen even if its just to vent. You can

scream,

> holler,

> > laugh (yes I said laugh), or even cry and no one will think the

> worst of

> > you.

> > There will be time when humor is best.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Bill. A couple more comments. You need to find an Elder Law

Attorney to review your mom's assets and figure out your options. Try

and find an Elder Law Attorney through a referral from someone you

know or respect. (Learned that the hard way myself, picked a random

lawyer from the elder law attorney website and was burned for $2500)

Also, your mom seems self-sufficient now, but it's never too early to

weigh your options for ALF with dementia units. Go to

http://www.aplaceformom.com/ -- they can help. It's a free service

(they get a commission from where your mom ends up.) Although it

turned out that I didn't use them for actual placement, I had

inquired and they gave me tons of useful information. But for me it

turned out to be a little, too late. I'd be curious who on this board

used this place successfully. I did find the woman who worked with me

a little on the pushy side, a salesperson. But so much was happening

at that time, it could have been me. Anyway. Your doing really good

Bill! And take care of yourself! Caregivers tend to neglect their own

needs first - and you need to be healthy so that you can continue

being your mom's best advocate!

; 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) and as of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

(See files, suggested links, databases, photos of members, and search

previous posts)

>

> Well,

> I am helping with my Mom right now by myself. I'm not sure I really

> need to be here all the time as she gets around pretty well right

now.

> She also has not had hallicunations in 4 weeks. She seems to get

> nausia sometimes in the morning. Not all the time. Not sure what

that is.

>

> I'm taking my vacation right now to help out till my brother gets

back

> on Thrusday. He will stay the rest of the summer I guess. I'm living

> with my mom right now.

>

> " Scared sick " is the title of this topic. I seem to be having more

> problems myself as I go through this problem the last week and a

half.

> I go through periods of relief when a doctor says it's going OK, but

> return to my normal state of a big knot in my stomach most of the

> time. I try to take her for a ride in the car when I can and that

> relieves some of my and her tensions.

>

> I guess all the uncertanty of medications etc, weight pretty heavy

on

> me. The biggest fear factor is what to do with her and how can we

> possibly pay for " caregivers " on her income and ours. She owns a

> pretty expensive house ($600,000 plus) but that is about it. If we

> sell it, then where will we " have to " put her? All these questions

are

> really tearing me up. I guess this is my problem. I wish I knew if

> anything was available from Medicare etc.

>

> I really apreciate your comments that you have given so far. I

really

> can't tell you how much help it is just to vent a little. I'm not

sure

> how much it will help. I'm sure I'm not the only one out there!!

>

> Thank you very very much!!

>

> Bill

[Guest guest]

Bill,

I was doing some research and came across this caregiving info and

thought it might be of some help to you. It gives some general

strategies to help you navigate your caregiving role and has a list

of resources. Hope it is helpful.

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392

I hope things are going well for you.

Daughter of Bill, 91

>