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When someone is diagnosed with LBD, is there a life span associated with it?

Ie: If you have LBD, will you only live for a certain # of years? OR, will

you still live just as long, but your quality of life will be depleted?

This is a question that's taken me a few weeks to ask, b/c I might not want

to know the answer. However, I'd rather know than go another night

wondering, " Will my dad be able to walk me down the aisle when I get

married? Will he be around to enjoy his grandkids? Will he live to the ripe

old age that he would have lived to if he didn't have LBD? "

THANKS!

:)

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  • 6 months later...

Also who is keeping tabs on the runny nose bit? Last I heard we were up to 5.

Ev

We have 6 with runny noses.....and I'm not counting Arlene. This seems like a

rather large number out of

our small group.........

Mai-Liis

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Hi, I'm new to the group. My name is Sheila and I

live in Puyallup, Washington.

My mom has Lewy Body Dementia has has a constant runny

nose. I've asked every doctor about it and they look

like I'm crazy or something.

I have a question. My mom is the sweetest person on

earth. She is 78 and has moderate Lewy Body.

She came to live with me from St. Louis in June after

my step-father died of a heart attack. He had

parkinson's for about ten years. I know now that he

covered for her quite a bit because she seems to be

going downhill fast.

All s..t hit the fan yesterday and today because I had

a contractor come and try to make her a bedroom and

bath that was wheelchair ready. Also an outside exit.

She is not in a wheelchair yet, but has fallen three

times this month. She got angry with us kids thinking

that we were stealing from her. I have power of

attorney (thank God) but I just don't know what to do,

how much time she has left, and if in that time, she

will be able to live at home. I really lost it today

when her personality changed and she started cursing

and accusing me of things.

I gave her a shower, turned on some mountain music,

(we are native Kentucky) and dh took her to the doctor

for me.

When she got back, she apologized and told me she

loved me and that I was her mommy now and didn't want

to leave me.

I was taking a salary set up by her attorney of fifty

dollars a day (my brother wanted me to get only ten

dollars a day, but the attorney said that was such an

insult that he wouldn't even write up an agreement for

that amount). Anyway, today I informed the family

that I was taking either one-hundred to one-fifty a

day or she could go live with them.

I got an e-mail back saying to take the money, and my

sister offered to take her for three months in June.

She has about forty five thousand cash and about

seventy-five in a home. I am forty six years old and

my husband might be taking a job in Berlin Germany

that I was going to let him go and stay here and take

care of mom.

Well, what an intro. It's good to get things off my

chest. Usually she is just very demanding, but when

the personality change happens, I can't take it. I

have fibromyalgia, post-tramatic stress syndrome, and

migraines. The PTSD is from her first husband trying

to kill us all during our childhood. Somehow he knew

I wasn't his, (we did a DNA study just last week to

see if I am really her's) it turns out she had a one

afternoon stand with a co-worker and I am the result.

I don't how he knew but he did and we ended up running

for our lives when I was nine years old.

So, needless to say, when she starts getting mean, I

can't take it.

I really need to know what to expect. No doctor will

tell me. I don't know if she is going to outlive her

money or not, and how and when she will pass on.

Sheila

--- Mai-Liis wrote:

>

> Also who is keeping tabs on the runny nose bit?

> Last I heard we were up to 5.

> Ev

>

>

>

> We have 6 with runny noses.....and I'm not

> counting Arlene. This seems like a rather large

> number out of

> our small group.........

> Mai-Liis

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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Sheila,

If you're willing to work 24, non-stop shifts

for $150 / day, I have a job for you! Starts

next Monday. I'll come and get you. :>

fyi: Emotional swings, sometimes wild,

appear to be part of the course.

Expect it to be bad, until proper

medications & dosages are applied. When

the dosages get out of wack, the evil / mean

side will appear again.

Get help now, before you get sick. Don't

wait. Spend your mom's money on her

with health care givers. (Its her money,

she made it, didn't she, spend it on

her, now, while she can enjoy the $$.)

If any of your relatives complain,

have them try being a care giver for

a few days, and see if they can cope

with it! I predict none can or will be

able to handle it.

V/R Pat

PS: I think most care givers from

agencies cost $15 - $22 / hour

for in home care.

Sheila wrote:

> Hi, I'm new to the group. My name is Sheila and I

> live in Puyallup, Washington.

>

> My mom has Lewy Body Dementia has has a constant runny

> nose. I've asked every doctor about it and they look

> like I'm crazy or something.

>

> I have a question. My mom is the sweetest person on

> earth. She is 78 and has moderate Lewy Body.

>

> She came to live with me from St. Louis in June after

> my step-father died of a heart attack. He had

> parkinson's for about ten years. I know now that he

> covered for her quite a bit because she seems to be

> going downhill fast.

>

> All s..t hit the fan yesterday and today because I had

> a contractor come and try to make her a bedroom and

> bath that was wheelchair ready. Also an outside exit.

> She is not in a wheelchair yet, but has fallen three

> times this month. She got angry with us kids thinking

> that we were stealing from her. I have power of

> attorney (thank God) but I just don't know what to do,

> how much time she has left, and if in that time, she

> will be able to live at home. I really lost it today

> when her personality changed and she started cursing

> and accusing me of things.

>

> I gave her a shower, turned on some mountain music,

> (we are native Kentucky) and dh took her to the doctor

> for me.

>

> When she got back, she apologized and told me she

> loved me and that I was her mommy now and didn't want

> to leave me.

>

> I was taking a salary set up by her attorney of fifty

> dollars a day (my brother wanted me to get only ten

> dollars a day, but the attorney said that was such an

> insult that he wouldn't even write up an agreement for

> that amount). Anyway, today I informed the family

> that I was taking either one-hundred to one-fifty a

> day or she could go live with them.

>

> I got an e-mail back saying to take the money, and my

> sister offered to take her for three months in June.

> She has about forty five thousand cash and about

> seventy-five in a home. I am forty six years old and

> my husband might be taking a job in Berlin Germany

> that I was going to let him go and stay here and take

> care of mom.

>

> Well, what an intro. It's good to get things off my

> chest. Usually she is just very demanding, but when

> the personality change happens, I can't take it. I

> have fibromyalgia, post-tramatic stress syndrome, and

> migraines. The PTSD is from her first husband trying

> to kill us all during our childhood. Somehow he knew

> I wasn't his, (we did a DNA study just last week to

> see if I am really her's) it turns out she had a one

> afternoon stand with a co-worker and I am the result.

> I don't how he knew but he did and we ended up running

> for our lives when I was nine years old.

> So, needless to say, when she starts getting mean, I

> can't take it.

>

> I really need to know what to expect. No doctor will

> tell me. I don't know if she is going to outlive her

> money or not, and how and when she will pass on.

>

> Sheila

>

> --- Mai-Liis wrote:

> >

> > Also who is keeping tabs on the runny nose bit?

> > Last I heard we were up to 5.

> > Ev

> >

> >

> >

> > We have 6 with runny noses.....and I'm not

> > counting Arlene. This seems like a rather large

> > number out of

> > our small group.........

> > Mai-Liis

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________

>

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Thanks ,

I've already had shinges in my mouth and ears three

times and herpes number one in my nose and face twice

since June from all the stress. I take antivirals for

life, and now have a new rash from stress that I'm on

antibiotics for four weeks.

I asked my psychiatrist to put me in the mental

hospital and he told me I had to be suicidal.

I also have a 24 year old son who lives with us who

has social anxiety, OCD and is bipolor. When he gets

manic, I want to just die. I see a psychiatrist once

a week and he thinks I'm on the brink of a breakdown.

I had one ten years ago after I almost died in a car

crash and my sons were burned in a house fire.

My mom has OCD too, I'm sure, because she has always

been rigid and was not intelligent enough or educated

enough (only went to sixth grade) to understand enough

to make decisions. So she never made a decision. She

would just let nature take it's course. Now, she

doesn't know how to make any decisions, and can't

anyway.

I couldn't believe it when my brother (who gives away

thousands of dollars for wedding gifts) told me to

take ten dollars a day as caregiver. I've only been

taking fifty a day, and haven't even taken all that.

The rest of the siblings get angry that I spend money

on mom (bed, chair) because they will not have any

left when she dies. She's only worth about

one-hundred ten thousand anyway, and that has to be

divided six ways if she died today so I don't

understand what they are all worried about.

I know they are all going to hate me when she dies and

there is no money left.

Sheila

-- Saunders

wrote:

> Sheila,

> If you're willing to work 24, non-stop shifts

> for $150 / day, I have a job for you! Starts

> next Monday. I'll come and get you. :>

>

> fyi: Emotional swings, sometimes wild,

> appear to be part of the course.

> Expect it to be bad, until proper

> medications & dosages are applied. When

> the dosages get out of wack, the evil / mean

> side will appear again.

>

> Get help now, before you get sick. Don't

> wait. Spend your mom's money on her

> with health care givers. (Its her money,

> she made it, didn't she, spend it on

> her, now, while she can enjoy the $$.)

> If any of your relatives complain,

> have them try being a care giver for

> a few days, and see if they can cope

> with it! I predict none can or will be

> able to handle it.

> V/R Pat

> PS: I think most care givers from

> agencies cost $15 - $22 / hour

> for in home care.

>

> Sheila wrote:

>

> > Hi, I'm new to the group. My name is Sheila and I

> > live in Puyallup, Washington.

> >

> > My mom has Lewy Body Dementia has has a constant

> runny

> > nose. I've asked every doctor about it and they

> look

> > like I'm crazy or something.

> >

> > I have a question. My mom is the sweetest person

> on

> > earth. She is 78 and has moderate Lewy Body.

> >

> > She came to live with me from St. Louis in June

> after

> > my step-father died of a heart attack. He had

> > parkinson's for about ten years. I know now that

> he

> > covered for her quite a bit because she seems to

> be

> > going downhill fast.

> >

> > All s..t hit the fan yesterday and today because I

> had

> > a contractor come and try to make her a bedroom

> and

> > bath that was wheelchair ready. Also an outside

> exit.

> > She is not in a wheelchair yet, but has fallen

> three

> > times this month. She got angry with us kids

> thinking

> > that we were stealing from her. I have power of

> > attorney (thank God) but I just don't know what to

> do,

> > how much time she has left, and if in that time,

> she

> > will be able to live at home. I really lost it

> today

> > when her personality changed and she started

> cursing

> > and accusing me of things.

> >

> > I gave her a shower, turned on some mountain

> music,

> > (we are native Kentucky) and dh took her to the

> doctor

> > for me.

> >

> > When she got back, she apologized and told me she

> > loved me and that I was her mommy now and didn't

> want

> > to leave me.

> >

> > I was taking a salary set up by her attorney of

> fifty

> > dollars a day (my brother wanted me to get only

> ten

> > dollars a day, but the attorney said that was such

> an

> > insult that he wouldn't even write up an agreement

> for

> > that amount). Anyway, today I informed the family

> > that I was taking either one-hundred to one-fifty

> a

> > day or she could go live with them.

> >

> > I got an e-mail back saying to take the money, and

> my

> > sister offered to take her for three months in

> June.

> > She has about forty five thousand cash and about

> > seventy-five in a home. I am forty six years old

> and

> > my husband might be taking a job in Berlin Germany

> > that I was going to let him go and stay here and

> take

> > care of mom.

> >

> > Well, what an intro. It's good to get things off

> my

> > chest. Usually she is just very demanding, but

> when

> > the personality change happens, I can't take it.

> I

> > have fibromyalgia, post-tramatic stress syndrome,

> and

> > migraines. The PTSD is from her first husband

> trying

> > to kill us all during our childhood. Somehow he

> knew

> > I wasn't his, (we did a DNA study just last week

> to

> > see if I am really her's) it turns out she had a

> one

> > afternoon stand with a co-worker and I am the

> result.

> > I don't how he knew but he did and we ended up

> running

> > for our lives when I was nine years old.

> > So, needless to say, when she starts getting mean,

> I

> > can't take it.

> >

> > I really need to know what to expect. No doctor

> will

> > tell me. I don't know if she is going to outlive

> her

> > money or not, and how and when she will pass on.

> >

> > Sheila

> >

> > --- Mai-Liis wrote:

> > >

> > > Also who is keeping tabs on the runny nose

> bit?

> > > Last I heard we were up to 5.

> > > Ev

> > >

> > >

> > >

> > > We have 6 with runny noses.....and I'm not

> > > counting Arlene. This seems like a rather large

> > > number out of

> > > our small group.........

> > > Mai-Liis

> > >

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> > __________________________________________________

> >

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Sheila,

You shouldn't be a care giver. Your

health isn't strong enough. (Your mom

will survive longer than you! )

re: The money and inheritances, screw'em.

Those dollars are for your mom's needs, not

the children. They can and should make their

own way in life and prepare for their own old

age as well as your uneducated mom has...IMHO.

You are in a tough spot and you are going to

have to make unpopular decisions with

your mom and sibblings. Make them early,

to minimize the pain, agony, and adverse

long term affects on your life, then move

on to the next problem. More are coming. :<

(This disease doesn't take prisoners,

you should treat it with the same hard

convictions.)

How's your husband taking all this? What's

going to be left for him after you dedicate

all waking hours to your demanding patient?

V/R Pat

Sheila wrote:

> Thanks ,

>

> I've already had shinges in my mouth and ears three

> times and herpes number one in my nose and face twice

> since June from all the stress. I take antivirals for

> life, and now have a new rash from stress that I'm on

> antibiotics for four weeks.

>

> I asked my psychiatrist to put me in the mental

> hospital and he told me I had to be suicidal.

>

> I also have a 24 year old son who lives with us who

> has social anxiety, OCD and is bipolor. When he gets

> manic, I want to just die. I see a psychiatrist once

> a week and he thinks I'm on the brink of a breakdown.

> I had one ten years ago after I almost died in a car

> crash and my sons were burned in a house fire.

>

> My mom has OCD too, I'm sure, because she has always

> been rigid and was not intelligent enough or educated

> enough (only went to sixth grade) to understand enough

> to make decisions. So she never made a decision. She

> would just let nature take it's course. Now, she

> doesn't know how to make any decisions, and can't

> anyway.

>

> I couldn't believe it when my brother (who gives away

> thousands of dollars for wedding gifts) told me to

> take ten dollars a day as caregiver. I've only been

> taking fifty a day, and haven't even taken all that.

> The rest of the siblings get angry that I spend money

> on mom (bed, chair) because they will not have any

> left when she dies. She's only worth about

> one-hundred ten thousand anyway, and that has to be

> divided six ways if she died today so I don't

> understand what they are all worried about.

>

> I know they are all going to hate me when she dies and

> there is no money left.

>

> Sheila

>

> -- Saunders

> wrote:

> > Sheila,

> > If you're willing to work 24, non-stop shifts

> > for $150 / day, I have a job for you! Starts

> > next Monday. I'll come and get you. :>

> >

> > fyi: Emotional swings, sometimes wild,

> > appear to be part of the course.

> > Expect it to be bad, until proper

> > medications & dosages are applied. When

> > the dosages get out of wack, the evil / mean

> > side will appear again.

> >

> > Get help now, before you get sick. Don't

> > wait. Spend your mom's money on her

> > with health care givers. (Its her money,

> > she made it, didn't she, spend it on

> > her, now, while she can enjoy the $$.)

> > If any of your relatives complain,

> > have them try being a care giver for

> > a few days, and see if they can cope

> > with it! I predict none can or will be

> > able to handle it.

> > V/R Pat

> > PS: I think most care givers from

> > agencies cost $15 - $22 / hour

> > for in home care.

> >

> > Sheila wrote:

> >

> > > Hi, I'm new to the group. My name is Sheila and I

> > > live in Puyallup, Washington.

> > >

> > > My mom has Lewy Body Dementia has has a constant

> > runny

> > > nose. I've asked every doctor about it and they

> > look

> > > like I'm crazy or something.

> > >

> > > I have a question. My mom is the sweetest person

> > on

> > > earth. She is 78 and has moderate Lewy Body.

> > >

> > > She came to live with me from St. Louis in June

> > after

> > > my step-father died of a heart attack. He had

> > > parkinson's for about ten years. I know now that

> > he

> > > covered for her quite a bit because she seems to

> > be

> > > going downhill fast.

> > >

> > > All s..t hit the fan yesterday and today because I

> > had

> > > a contractor come and try to make her a bedroom

> > and

> > > bath that was wheelchair ready. Also an outside

> > exit.

> > > She is not in a wheelchair yet, but has fallen

> > three

> > > times this month. She got angry with us kids

> > thinking

> > > that we were stealing from her. I have power of

> > > attorney (thank God) but I just don't know what to

> > do,

> > > how much time she has left, and if in that time,

> > she

> > > will be able to live at home. I really lost it

> > today

> > > when her personality changed and she started

> > cursing

> > > and accusing me of things.

> > >

> > > I gave her a shower, turned on some mountain

> > music,

> > > (we are native Kentucky) and dh took her to the

> > doctor

> > > for me.

> > >

> > > When she got back, she apologized and told me she

> > > loved me and that I was her mommy now and didn't

> > want

> > > to leave me.

> > >

> > > I was taking a salary set up by her attorney of

> > fifty

> > > dollars a day (my brother wanted me to get only

> > ten

> > > dollars a day, but the attorney said that was such

> > an

> > > insult that he wouldn't even write up an agreement

> > for

> > > that amount). Anyway, today I informed the family

> > > that I was taking either one-hundred to one-fifty

> > a

> > > day or she could go live with them.

> > >

> > > I got an e-mail back saying to take the money, and

> > my

> > > sister offered to take her for three months in

> > June.

> > > She has about forty five thousand cash and about

> > > seventy-five in a home. I am forty six years old

> > and

> > > my husband might be taking a job in Berlin Germany

> > > that I was going to let him go and stay here and

> > take

> > > care of mom.

> > >

> > > Well, what an intro. It's good to get things off

> > my

> > > chest. Usually she is just very demanding, but

> > when

> > > the personality change happens, I can't take it.

> > I

> > > have fibromyalgia, post-tramatic stress syndrome,

> > and

> > > migraines. The PTSD is from her first husband

> > trying

> > > to kill us all during our childhood. Somehow he

> > knew

> > > I wasn't his, (we did a DNA study just last week

> > to

> > > see if I am really her's) it turns out she had a

> > one

> > > afternoon stand with a co-worker and I am the

> > result.

> > > I don't how he knew but he did and we ended up

> > running

> > > for our lives when I was nine years old.

> > > So, needless to say, when she starts getting mean,

> > I

> > > can't take it.

> > >

> > > I really need to know what to expect. No doctor

> > will

> > > tell me. I don't know if she is going to outlive

> > her

> > > money or not, and how and when she will pass on.

> > >

> > > Sheila

> > >

> > > --- Mai-Liis wrote:

> > > >

> > > > Also who is keeping tabs on the runny nose

> > bit?

> > > > Last I heard we were up to 5.

> > > > Ev

> > > >

> > > >

> > > >

> > > > We have 6 with runny noses.....and I'm not

> > > > counting Arlene. This seems like a rather large

> > > > number out of

> > > > our small group.........

> > > > Mai-Liis

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > > removed]

> > > >

> > > >

> > >

> > > __________________________________________________

> > >

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Thanks Pat.

I know now that I have no business being a caregiver.

However, before my step-dad died, they had planned to

move here and put a little cottage in our back yard.

I had no idea they were as ill are they were. I

hadn't seen them in three years and they lived

three-thousand miles away. Three weeks before their

move here, he died. No one had noticed that my mom

was sick, until I saw her and got the dx. Total

denial. So I was stuck. They put her on a plane

three weeks after his death and the rest is history.

The one most concerned about the money is my brother

who is recovering from cancer. They are total money

hungry and he is young 56 and knows that he probably

doesn't have but a few more years. He hasn't worked

in years because of his ill health. Although he was

hurt at work, got a huge settlement, owns his own home

and his wife has a pretty good job that he will only

let her work part time.

As far as my poor dh is concerned, he hasn't had sex

but once this year, because I'm too tired or too sick.

Also, he is thinking about taking a job in Europe and

I'm staying here to take care of mom. It's a good

thing we have a strong marriage. We've been married

twenty-seven years in April. He lost his mother and

grandmother this year along with my step-father. I

told him I would leave mom with my brother a month at

a time and live with him in Europe a month at a time.

He hasn't got the job yet, but I think he could have

it if he wants it. Two of his co-workers are there

now. It's such a good opportunity, we've always

wanted to live in Europe and this is our chance.

Since mom is in the moderate stage, I just don't know

if she will forget us. I have promised her no nursing

home unless I just can't take care of her daily

hygiene or if she completely forgets who I am.

She is so afraid. She just lost her husband and now

is afraid of losing me too.

I just don't know what the future holds as far as her

health is concerned. She cannot do anything if she is

under stress. Cannot even talk on a telephone. On

good days, she can talk and make sense. She can walk

with a cane but is very unsteady and still takes

showers by herself, as long as I am right by the

shower so I can catch her if she falls.

Sheila

who knows now that my step-father died because he was

her only caregiver and he had advanced parkinsons.

-- Saunders

wrote:

> Sheila,

> You shouldn't be a care giver. Your

> health isn't strong enough. (Your mom

> will survive longer than you! )

>

> re: The money and inheritances, screw'em.

> Those dollars are for your mom's needs, not

> the children. They can and should make their

> own way in life and prepare for their own old

> age as well as your uneducated mom has...IMHO.

>

> You are in a tough spot and you are going to

> have to make unpopular decisions with

> your mom and sibblings. Make them early,

> to minimize the pain, agony, and adverse

> long term affects on your life, then move

> on to the next problem. More are coming. :<

> (This disease doesn't take prisoners,

> you should treat it with the same hard

> convictions.)

>

> How's your husband taking all this? What's

> going to be left for him after you dedicate

> all waking hours to your demanding patient?

> V/R Pat

>

>

__________________________________________________

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Sheila--

1. There are no non-dysfunctional families

2. When Lewy Body shows up, everyone falls apart--each in his or her

own way--but it eases up over time. The sister who made my life hell

when my mother first get really sick now accidentally greets me on

the phone with a Freudian slip, " Hi, it's your daughter D....oh, I

mean your sister D. "

3. According to my neighbors (who were commenting on my plans for my

house), building an extra bedroom and bathroom may cost a lot more

than you planned on

4. $150 a day is dirt cheap but your mother could live for many more

years--will the money hold out

This group doesn't often get into such practicalities but all of the

above is part of LBD too

> >

> > Also who is keeping tabs on the runny nose bit?

> > Last I heard we were up to 5.

> > Ev

> >

> >

> >

> > We have 6 with runny noses.....and I'm not

> > counting Arlene. This seems like a rather large

> > number out of

> > our small group.........

> > Mai-Liis

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

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In a message dated 2002-01-15 12:04:52 PM Eastern Standard Time,

MaiLiis@... writes:

> Worth looking into for

> anyone who has the inclination and time for research.

>

what about the scientists, we're not getting too much help in other areas.

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Thanks for being there. I asked mom is she would want

a feeding tube if the need ever arose. She said no.

I am going to bring this up this weekend when the

family gets together. I know she will think for a

week following that we are trying to get rid of her,

but I just don't want any arguments when the time

comes. We have all agreed not to discuss money. I am

just going to do what I want after I discuss each

decision with her attorney.

I'm on my way now to call the county in St. Louis to

find out how to put her house in my name.

Sheila

--- LewyLady@... wrote:

> Oh my goodness, Sheila! You have a load and a half

> there. Thanks for your

> very newsy introduction. Glad you found this group,

> but so sorry for the

> need.

>

> So far I have been lucky with the personality

> changes. My husband is just

> much more docile than he used to be. So far no ugly

> stuff, unless I initiate

> it in my own irritated state.

>

> Yours is a rare situation financially and

> sibling-wise. (Although your

> subsequent posts show some ambivalence among your

> sibs.) Good for your mom's

> attorney to have an at least minimal understanding

> of your value as a

> caregiver. I would take the sibs at their word,

> enjoy the additional income,

> and let your sister care for your mom next summer.

> If your husband does get

> the European job it would a marvelous opportunity

> for BOTH of you. As much

> as your mother needs you, your vows give primacy to

> your relationship with

> him.

>

> As for what to expect with the progression of the

> disease, you should expect

> the unexpected. This disease has a list of " rules "

> but it sure doesn't play

> by them! The fluctuations last anywhere from a few

> minutes to many months.

> Her life expectancy can be short or long, in large

> part dependent upon the

> condition of her general health.

>

> Good luck with all the decisions, Sheila. Know that

> we are here.

> Cheryl

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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oh my cheryl , i knew my shortcuts wud get me n2 truble . I said

" caregiver 4 jd " . make that caregiver for jd & only jd unless i manage 2

get my hands on one of our 5 grandsons (4 and under). 6th is due in

may. It's so hard seeing jd want 2 run & play with them & not being

able 2 . He can't read well enuf 2 keep their attention. 3yr old

gabriel looked at him the other day and said, " papa i just can't

understand what you're saying " . About the only thing he can do with

them is watch their little videos..... and he has a hard time staying

awake for that. But just yesterday i bought some little games for 3 & 4

yr olds. I played with him last night & hope he can catch on enuf to

play with them. The " peanutbutter jelly sandwich " game is gonna work

but " search 4 animals " may be a stretch. I have a lot of the wooden

preschool puzzles which are just too hard for him. Come to think of it

he can probably join in with playdough fun. I'm sure someone will have

some more suggestions.

On Tue, 15 Jan 2002 12:22:46 EST LewyLady@... writes:

Ruth, what is this? You are caregiving FOUR? Hopefully not all LBD?

Cheryl

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I've been thinking all night about my mom's fear of

going into a nursing home. I visited one once, and

one of the ladies there was a wife of a minister and

she loved living there.

My mom is a hard woman to describe. However, she has

always been so sweet, no one ever wanted to upset her

at all. She never spent any money, (was the daughter

and wife of a coalminer) so there really wasn't any

money until she saved every dime she had with her

second marriage. I didn't tell her about a sexual

abuse with her second husband to protect her, and my

niece told me she did the same thing. For some

reason, she has given the appearance of being too

frail to handle any pressure.

I think this is a selfish thing. My father (who

really wasn't my father) spent the first nine years of

my life trying to kill me (hammer through my skull,

gun to my head, rape etc.) and mom was too selfish of

her own abilty to cope without him, that she stayed

with him and denied that he was doing this to me. He

also beat her quite offen and it was only when he

excaped from a mental hospital, my uncle forced us to

get into the car and drove us three states away so he

cound't find us. I guess I just don't understand

battered womans syndrome. Or maybe it's her rigidity

of her OCD that will not allow her to make a decision.

However, the guilt she would give us by putting her

into a nursing home would be horrible. She would die

on purpose just to show us how bad it was.

I have spend my entire life and mental health

protecting her fragile nature. I need to ask my

psychiatrist why I do this.

Sheila

--- LewyLady@... wrote:

> Oh my goodness, Sheila! You have a load and a half

> there. Thanks for your

> very newsy introduction. Glad you found this group,

> but so sorry for the

> need.

>

> So far I have been lucky with the personality

> changes. My husband is just

> much more docile than he used to be. So far no ugly

> stuff, unless I initiate

> it in my own irritated state.

>

> Yours is a rare situation financially and

> sibling-wise. (Although your

> subsequent posts show some ambivalence among your

> sibs.) Good for your mom's

> attorney to have an at least minimal understanding

> of your value as a

> caregiver. I would take the sibs at their word,

> enjoy the additional income,

> and let your sister care for your mom next summer.

> If your husband does get

> the European job it would a marvelous opportunity

> for BOTH of you. As much

> as your mother needs you, your vows give primacy to

> your relationship with

> him.

>

> As for what to expect with the progression of the

> disease, you should expect

> the unexpected. This disease has a list of " rules "

> but it sure doesn't play

> by them! The fluctuations last anywhere from a few

> minutes to many months.

> Her life expectancy can be short or long, in large

> part dependent upon the

> condition of her general health.

>

> Good luck with all the decisions, Sheila. Know that

> we are here.

> Cheryl

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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