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Dear Jan,

I used to be scared... now I'm just numb - I guess I expect things to happen. 

It's also easier with the support of the wonderful people in this group.  Her

last decline was about 6-8 months ago, and it was a little one, and she's been

holding steady since.  We just keep hoping for the best and for a relatively

easy ride.

Many hugs,

Helene

 

Subject: Re: new

To: LBDcaregivers

Date: Tuesday, November 4, 2008, 4:32 PM

im so sorry helene, for your mom. how do you feel emotionally? has it

scared you as her situation has deteriorated? i think its wonderful

that your aunt is keeping her at home. thats very special of all of

you. luv jan

>

> From: janiceshapiro95 <janiceshapiro95@ ...>

> Subject: new

> To: LBDcaregivers@ yahoogroups. com

> Date: Monday, November 3, 2008, 5:04 PM

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> hello, im new here. my name is jan. my dad was diagnosed with LBD

about

> 2 to 3 years ago. we actually didnt know this till yesterday (long

> story). we had thought he had parkinsons and alzheimers.

>

> BUT...he actually has LBD. all i know is from what i have read up

on

> internet sites. i am so new to this. im in shock, and i am

devastated,

> and i need to talk to someone. if anyone can help me, with some

support

> and info, and what this is really all about i would be so grateful.

> thanks jan

>

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Janice, dear lady, you are feeling hurt as will happen many times before all

this is over. I am so sorry. It is hard to accept that our loved ones can't

help it.

My darling husband of 38 years has accused me of partying all night and

bringing someone home with me. Now that hurts. But, he is paranoid, suspicious,

jealous, and fighting this disease that he doesn't know how to handle. He is

devastated.

One dear girl's father tried to sell her as a prostitute, and she was called

one in front of others. She was crushed, and she has serious health issues.

A nurse comforted her for a long time, as I understand it. She tried to

assure her that it was all part of the disease.

Yes, it's hard to take. But, it will happen and our LO can't help it. The

lesions in their brains do all kinds of crazy thing to them. My husband said,

" I hate this disease " when he had a lucid moment. We all do. It is the ugliest

of all illnesses I do believe. It only gets worse before they are released

from all of it in death.

Darling, I am so sorry for the hurt, but you will square your shoulders and

be brave for your Daddy who loves you dearly.

Love a lot and be strong,

Imogene

In a message dated 11/5/2008 4:15:11 PM Central Standard Time,

janiceshapiro95@... writes:

im so sorry. today my dad said he knows all of his kids and

grandchildren, but he cant remember who fits with who. mn dad is a

doctor, and was an extremely talented man in many fields, including

photography, wood work, and he could converse with ANYONE on ANY

topic. it is devastating to see him like this. the forgetting things

has been for years, but this sudden deterioration has left me

absolutely traumatised.

today he told me he didn't know who i was married to.

and he didn't know the difference between me and my sister.

i am so - i dunno what

jan

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Yes, Jan She passed on October 20th at 12:58 PM

Gladys

-- Re: new

hi gladys. thank you so much for your warm welcome. by your mom being

freed from LBD, do you mean she passed away? luv jan

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

Welcome to LBDcaregivers.

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Jan S,

Mom came to live with me at the end of '98. Her initial diagnosis was

Alzheimers. I never did get a different diagnosis. Back then it was hard to

get much more than " dementia. " I just knew Mom was different than most of the

AD people that were in one of the groups. I started to look and found LBD and

it fit all her symptoms way to well.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: new

hi donna, thank you for writing to me. i admire you so much for

remaining here to help other people. i have another similar situation

but did not have the strength at all to stay on and help once my baby

was no longer with me. anyway... thats another issue.

i am so sorry for the loss of your mom, and can only imagine what you

have been through. how long before she passed away, was she diagnosed?

what was it like looking after her?

luv jan

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Dear Jan,

We all understand the feelings you are having... it is so hard to watch the

decline.  We are all here for you.  Knowing there is this kind of support has

helped me so much in dealing with Mom's situation.

Many hugs,

Helene

>

> From: janiceshapiro95 <janiceshapiro95@ ...>

> Subject: Re: new

> To: LBDcaregivers@ yahoogroups. com

> Date: Tuesday, November 4, 2008, 4:32 PM

>

>

>

>

>

>

> im so sorry helene, for your mom. how do you feel emotionally? has

it

> scared you as her situation has deteriorated? i think its wonderful

> that your aunt is keeping her at home. thats very special of all of

> you. luv jan

>

>

> >

> > From: janiceshapiro95 <janiceshapiro95@ ...>

> > Subject: new

> > To: LBDcaregivers@ yahoogroups. com

> > Date: Monday, November 3, 2008, 5:04 PM

> >

> >

> >

> >

> >

> >

> > hello, im new here. my name is jan. my dad was diagnosed with LBD

> about

> > 2 to 3 years ago. we actually didnt know this till yesterday

(long

> > story). we had thought he had parkinsons and alzheimers.

> >

> > BUT...he actually has LBD. all i know is from what i have read up

> on

> > internet sites. i am so new to this. im in shock, and i am

> devastated,

> > and i need to talk to someone. if anyone can help me, with some

> support

> > and info, and what this is really all about i would be so

grateful.

> > thanks jan

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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