RE: diagnosis

February 23, 2005

I was dealing with telling a physician and telling him was difficult...I can

only imagine how difficult a time others are having.

Simmel

>From: advancedemp21@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: diagnosis

>Date: Wed, 23 Feb 2005 11:34:14 EST

>

>Thank Goddess for optimism in dealing with LBD. I had spoken to Dr. " E "

>one

>week prior and was aware of Dad's formal diagnosis. As I sat in the lobby

>and waited to be called in, I thought about the irony. How do you tell

>someone with demensia that they have demensia?

>Grace

>

February 23, 2005

The more that I live, hear and experience LBD through my Dad the more

convinced that I am that at least in HIS case, it doesn't matter because there's

nothing wrong with him, why can't you all understand the conspiracy? I think

that my level of patience and ability to stay grounded is going to be much

tougher on me than on him, 'cause he's oblivious!

Grace

February 23, 2005

Grace, I have that problem with my Mom. She cannot remember what her

diagnosis is and she is determined that it's something she can cure with

exercise. I calmly remind her what's going on and it makes her sad.

But since she KNOWS something is happening to her and I'm determined to

not lie to her.

So, how do you tell them? Kindly and over and over and over perhaps?

diagnosis

Thank Goddess for optimism in dealing with LBD. I had spoken to Dr.

" E " one

week prior and was aware of Dad's formal diagnosis. As I sat in the

lobby

and waited to be called in, I thought about the irony. How do you tell

someone with demensia that they have demensia?

Grace

February 23, 2005

To & Grace,

Kathleen here - Scotland. With my dad he was first diagnosed as having Vascular

Dementia. But my dad was always of a worrying and fretful personality, not good

at dealing with any sort of trauma or traumatic situation so we sort of told him

he had something called Vascular DISEASE......we knew the word Dementia would

terrify him.

We were able to explain that Vascular Disease was akin to hardening of the

arteries at the brain, blocking blood flow periodically, and of course not

getting the freshly oxygenated blood round the brain was what made him forgetful

and his balance bad. It was one year later by the time our Consultant decided

it was Lewy Body.......but by that time my dad was having frightening

hallucinatory bouts etc. and couldn't 'cope' with any new - and to him -

frightening information. So we stuck with telling him the " plumbing to his

brain was blocked a bit " and he was happy enough for that.

I guess it's all down to the individual, personally I would most certainly want

to know all the details if it was me being diagnosed but we were able to

correctly evaluate that my dad couldn't quite deal with it all and would have

worried and fretted terrible and he most certainly would have freaked at the

word Dementia. I actually had an altercation with a pushy visiting Social

Worker who was using her rule book and telling me that hiding things from the

patient wasn't really to their advantage and she wouldn't discourage the use of

the word Dementia and certainly intended using it with my dad in our home - I

had her swiftly removed.

I understand what the rule book is about but any trained Social Worker should

surely be able to asses the personality herself and take on board the

information from the family who are LIVING THIS DISEASE and at least listen to

it, this particular person was completely riding rough-shod over our requests

and was making my dad distinctly nervous. What riled me even more was that our

wonderful Consultant Physco-Geriatrician who we value immensely had no problem

at all realising that giving my dad all the facts wasn't the correct thing for

HIM.......he most happily treated my dad in the more cushioned manner we thought

appropriate.

Anyway, I'm rattling on a bit here - that Social Worker bit always manages to

rile me - but I guess you need to know what your loved ones can take in by way

of diagnosis, some people want & need to know it all but with others it can be a

kindness to perhaps be less blunt.......we certainly never wanted to LIE to my

dad but we did know what he would and wouldn't cope with and did our best with

what we had. Even now that he's in care we still talk about " ....this old

Vascular Disease..... " and what it's doing to him, he's still under the same

wonderful Consultant and he also still chats to him about his brain giving off a

few short circuits.....all of this is just less frightening language than the

word Dementia - well to my dad anyway.

Take care both - Kathleen.

diagnosis

Thank Goddess for optimism in dealing with LBD. I had spoken to Dr.

" E " one

week prior and was aware of Dad's formal diagnosis. As I sat in the

lobby

and waited to be called in, I thought about the irony. How do you tell

someone with demensia that they have demensia?

Grace

February 23, 2005

Hah - that made me laugh right out loud..!!

Your so right Grace, my dad for the first 18 months after diagnosis thought he

wasn't paranoid - but the world WAS out to get him!!

Thank god we can smile..!!

Kathleen.

Re: diagnosis

The more that I live, hear and experience LBD through my Dad the more

convinced that I am that at least in HIS case, it doesn't matter because

there's

nothing wrong with him, why can't you all understand the conspiracy? I think

that my level of patience and ability to stay grounded is going to be much

tougher on me than on him, 'cause he's oblivious!

Grace

February 23, 2005

I absolutely agree - in my Dad's mind, he is just like he always

was, but sometimes he's unusually confused. Even a zipper mystifies

him. But to him, the former engineer, he knows he can figure things

out and it always catches him by surprize that his 'figure-outer' is

not working as he expects.

> The more that I live, hear and experience LBD through my Dad the

more

> convinced that I am that at least in HIS case, it doesn't matter

because there's

> nothing wrong with him, why can't you all understand the

conspiracy? I think

> that my level of patience and ability to stay grounded is going to

be much

> tougher on me than on him, 'cause he's oblivious!

> Grace

>

February 23, 2005

With my Dad, I walk a very fine line. He doesn't want the fact that

he has dementia brought up every time he is confused. In fact, his

perception is so bad that he things that even though he has trouble

changing the channel on his tv, that he should be allowed to drive.

I've learned to bring it up as infrequently as possible, but to be

extremely honest when it's necessary. His dignity is extremely

fragile, and I can't be 100% honest with him 100% of the time. So,

when he has his clothes on backwards, I simply suggest he take them

off and help him reverse them. But this week, when we talked about

taking a vacation (with family or a hired caregiver), I was 100%

honest with him that someday in the not too distant future he would

be unable to travel at all, and that we needed to make it happen now

before it was beyond his ability.

So, balance is the key. The thinker is not 100% intact, but the

feeler sure is.

> Thank Goddess for optimism in dealing with LBD. I had spoken to

Dr. " E " one

> week prior and was aware of Dad's formal diagnosis. As I sat in

the lobby

> and waited to be called in, I thought about the irony. How do

you tell

> someone with demensia that they have demensia?

> Grace

>

February 23, 2005

angela,

it is very very difficult to convince our loved ones not to do things that are

safe for them anymore. i was fortuanat as dad had vision distortion and after a

few backing up into things episodes he quit driving on his own.

logic is hard to use on lbd patients, and they get so upset because they know

something is worng and cant do much about it , but try to use logic on the spur,

like give him two simple options but make the one you want sound great, for

example dad why dont you let me chaffeur you, i would love your company,

instead of you driving, might help i hope, hugs sharon m

Date: 2005/02/23 Wed PM 06:32:58 EST

To: LBDcaregivers

Subject: Re: diagnosis