Today

March 17, 2005

I read your unfolding story which SO much admiration.

My dad has LBD - diagnosed Feb 2002. It's been a roller coaster ride, but my

dad isn't a great coper and we never mentioned the word Dementia to him - he

would have freaked out and just couldn't have coped. So really we've not been

too able to discuss LBD with him at all.

In the begining his diagnosis was Vascular Dementia and we named it just

Vascular Disease, explained it was tiny mini strokes and he could accept that.

Yet here you are in full charge of the information regarding your illness and

being able to have a laugh at it - isn't that wonderful? Easy for me to say I

know - but believe me you ARE wonderful! An inspiration to most of us here who

are carers but have no first hand knowledge of the disease itself.

I found that bit intersting where you say you never take your husbands word for

things but have to be shown proof.....that makes so much sense of our years with

my dad, too too often before he was diagnosed he questioned and quarelled over

the simplest things.......all we felt was frustration because we hadn't a clue

there was something bigger going on.

Anyway Patti, you enjoy your break that's coming with your sister & trust her to

just be your guide & carer for a while give over control and let her take the

reins, it's lovely that's she's flying to be with you and flying you back to her

place - what a wonderful break for you and in the best of care.....do try &

enjoy to the fullest.......take lots of photos and have a lovely album to look

back on.

Hope it goes well - best wishes.

Kathleen - Scotland.

Today

I want to tell you a funny story which if anyone else did it that

didn't have LBD well they would just die. My caregiver took me

shopping to day for new clothing to wear on a trip in June. We were

there quite a lengthy time and both had to use the restroom before we

left. So I sood by the carts while she went and she stood by them

while I went. I walked into the restroom and went into an empty

stall. Did my business and then tried to figure out how to flush the

toilet. It wouldn';t flush. I wiggled a few things then saw some

electric wires and left well enough alone. I walked ou and off to my

left was a man tugging at his britches. and I tought how

embarrrassing for him then I saw the Urinals and just kept right on

walking as I realized I was the one who was in the wrong place. I

thought it was so funny. I should have been embarrassed, but I

wasn't. I was just tickled. Now that is weird! Not like the old me at

all.

You all have been talking about hearing things and seeing things

differently than others. although I am not hallucinatory at the time

I do hear things differently than my husband. We often argue about

what shows they say is coming on and when and he is always right.

He gets upset because I won't take his word for it and he is right

nearly all the time, but sitll I have to be shown and proved that I

am wrong. Well after all I am from the Show-Me state...LOL No I know

it is the disease and I am slipping rather quickly. I am trying to

hang on though for as long as I can

I have a trip planned in June to go visit with my suister in Oregon.

She is coming to collect me and fly with me to her home. I am

planning on staying for 2 months. I hope all works out ok. She is a

nurse and is aware of what is goinng on with me.

I want so much to see the ocean, but I fear once I get there I will

just want to stay inside like I do here. I hope not I hope I am able

to enjoy the thigs she is planning on us doing together...I guess I

will wait and see....Hugs...Patti

Welcome to LBDcaregivers.

March 17, 2005

Patti,

Thank you so much for sharing your story.

Hugs,

Margee

March 18, 2005

Patti,

You are such a neat lady! A good sense of humor is so essential.

I so much hope that you are enjoy your visit to the ocean with your sister..

Thanks for sharing your story.

Dann

Patti wrote: