Re: am I wrong....

[Guest guest]

Hi, Pammie,

This issue is kind of a tough one. Each situation is so different. I was

the primary caregiver for my father with all the decision making authority. I

decided not to tell my mother the whole story about dad's illness for a long

time. I eventually did when I thought the time was right. There was

nothing my mother could do about it so I didn't see any reason for her to have

to

be miserable about it any longer than necessary. I didn't like to use the

" dementia " word around my dad because that was the thing he dreaded the most if

he were to ever get sick. I referred to it as Lewy Body Disease when needed.

It is such an individual decision depending on the family dynamic. It was

the best decision for my mother, but it might not be for someone else. Other

people here will have input also to help you make the best decision for your

family.

Hugs,

Piper

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

My Dear Pammie, I don't know what others have written, but it is my opinion

that you are not wrong.

Believe me! Dementia is horrible, terrible, a hideous killer. It isn't just

because we are getting old. It depletes a person of all dignity. It takes the

last few years a person has and turns it into a nightmare.

Love you darling,

Imogene

In a message dated 4/23/2008 1:34:02 PM Central Daylight Time,

kickbuttbooks@... writes:

I have " guilt " and I need to get it off of my chest....sigh..... I have

consciously made the choice to not tell my dad about mothers true

" condition " . He

just thinks that she is trying to get over the UTI's and the fall at Easter.

He obviously knew about the hallucinations last summer but they only lasted

a

few moths and were gone once the Risperdol was started. The Dr. that

prescribed the Risperdol never said anything to him about LBD.

I sincerely feel that it will be detrimental in his recovery of his own

illnesses and he is healing so well, really looks like a new man. He is 9

years

younger than mother and loves her madly. I am afraid that he will give up

and

go down hill, maybe even poor himself back into a " bottle " . He is a

recovering

alcoholic.

I did recently mention " dementia " but didn't go into any details. He, like

I

did up until I joined this group, really doesn't think dementia is as bad as

it really is. It's just " part of getting old " , he said.

What to you guys think? Am I wrong?

Hugs, Pammie, proud daughter of the " Little Queen " , 76 years old, Diagnosed

with LBD in the fall of 2007, currently taking Avapro, Aricept, Risperdal,

Foltrin, Verapamil ER, Nexium, Prednisone, Ketoprofen and Boneva.

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

Donna, believe me I Have thought about him being mad at me. But, like Piper

has said, I really feel that there is nothing that my Dad can do about it and

it will only make him worry and depressed and I am scared to death that he

will climb back into a bottle again. It will kill him if he does, no doubt

about it.

I thought I would wait and tell him when the time is right, he is stronger

and there is no hiding it anymore, which could be several more years or it

could be several more months.

<<snip>> I decided not to tell my mother the whole story about dad's illness

for a long

time. I eventually did when I thought the time was right. There was

nothing my mother could do about it so I didn't see any reason for her to

have to

be miserable about it any longer than necessary. I didn't like to use the

" dementia " word around my dad because that was the thing he dreaded the most

if

he were to ever get sick. I referred to it as Lewy Body Disease when needed.

<<snip>>

Hugs, Pammie, proud daughter of the " Little Queen " , 76 years old, Diagnosed

with LBD in the fall of 2007, currently taking Avapro, Aricept, Risperdal,

Foltrin, Verapamil ER, Nexium, Prednisone, Ketoprofen and Boneva.

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

He's her husband. He has a right to know the truth. If my kids kept this

kind of information from me I would not only be angry, but I wouldn't trust

them anymore.

Just my opinion.

((hugs))

Gladys

-- am I wrong....

I have " guilt " and I need to get it off of my chest....sigh..... I have

consciously made the choice to not tell my dad about mothers true " condition

.. He

just thinks that she is trying to get over the UTI's and the fall at Easter.

He obviously knew about the hallucinations last summer but they only lasted

a

few moths and were gone once the Risperdol was started. The Dr. that

prescribed the Risperdol never said anything to him about LBD.

I sincerely feel that it will be detrimental in his recovery of his own

illnesses and he is healing so well, really looks like a new man. He is 9

years

younger than mother and loves her madly. I am afraid that he will give up

and

go down hill, maybe even poor himself back into a " bottle " . He is a

recovering

alcoholic.

I did recently mention " dementia " but didn't go into any details. He, like

I

did up until I joined this group, really doesn't think dementia is as bad as

it really is. It's just " part of getting old " , he said.

What to you guys think? Am I wrong?

Hugs, Pammie, proud daughter of the " Little Queen " , 76 years old, Diagnosed

with LBD in the fall of 2007, currently taking Avapro, Aricept, Risperdal,

Foltrin, Verapamil ER, Nexium, Prednisone, Ketoprofen and Boneva.

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

Wow...I think there's no way I could have not told my Dad. He is, after all,

the love of my Mom's life.

It was tough on him. He was heartbroken. We've gone through the stages of

grieving that all people go through as they lose a loved one, and in fact, we go

through those same stages even though the dying is protracted. Our LO's die a

slow death. We do denial, anger, bargaining...the whole bit. To not tell

someone the truth is to deny them the grieving process.

Of course, that's just my opinion.

Jannis

" They that wait upon the LORD shall renew their strength; they shall mount up

with wings as eagles; they shall run, and not be weary; they shall walk and not

faint. " -- Isaiah 40:31

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

HI Pam,

We decided not to go into too much detail about LBD with my mom. She was a

champion worrier all of her life and I know that the dx at age 63 would have

just done her in sooner. We did explain things to dad but he lived in denial

for a long time until her symptoms could no longer be denied.

I think that we really have to take the personality of the person and life

circumstances into consideration. Every situation is different and what may

work with one family may not work with another. I don't see a problem with

easing your father into this information.

Courage

am I wrong....

I have " guilt " and I need to get it off of my chest....sigh..... I have

consciously made the choice to not tell my dad about mothers true " condition " .

He

just thinks that she is trying to get over the UTI's and the fall at Easter.

He obviously knew about the hallucinations last summer but they only lasted a

few moths and were gone once the Risperdol was started. The Dr. that

prescribed the Risperdol never said anything to him about LBD.

I sincerely feel that it will be detrimental in his recovery of his own

illnesses and he is healing so well, really looks like a new man. He is 9

years

younger than mother and loves her madly. I am afraid that he will give up and

go down hill, maybe even poor himself back into a " bottle " . He is a recovering

alcoholic.

I did recently mention " dementia " but didn't go into any details. He, like I

did up until I joined this group, really doesn't think dementia is as bad as

it really is. It's just " part of getting old " , he said.

What to you guys think? Am I wrong?

Hugs, Pammie, proud daughter of the " Little Queen " , 76 years old, Diagnosed

with LBD in the fall of 2007, currently taking Avapro, Aricept, Risperdal,

Foltrin, Verapamil ER, Nexium, Prednisone, Ketoprofen and Boneva.

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

My Mother (lives with me) has LBD- she knows what she has and some of

what will come (her doctor was open). I've chosen not to go into all

the gory details any sooner than needed. On her good days she

understands - on her bad days she blames that *** Lewy.

One of my brothers is involved in her care and keeps up on the info.

(he has our Father living with him-other problems) The 2 younger

brothers are in denial- they attempt to stay away or at least not be

alone with her. I think we all have a good idea how much info our loved

ones can handle. - I can't see where worrying would do her any good -we

talk about the current problems and some of what might happen next

Sharon

Mother is on brupropion, mirapex, sinemet, aricept, namenda, abilfy,

fish oil, lethicin, ginko biloba and vitamin e

doing much better than a year ago (before diagnosis)

PS in Grand HAven MI

>

>

> Hi Jannis, I am normally an open and up front person,too, I sure was

with

> Don. But I do realize that there are extenuating circumstances.

> Love a lot,

> Imogene

>

>

>

[Guest guest]

No, you are not wrong. I am very soon going to have to make the " plunge " . I

am waiting until after the visit with the neurologist tomorrow. My fear is

that my Dad will not be able to take care of her as she is forever and he will

elect to put her is a nursing home. It will kill her, Jannis and I am

frightened out of my mind. Yet I cannot care for her 24/7 myself so I cannot

stop him

if this is what he decides to do. I am damn sad about this.....

Hugs, Pammie, proud daughter of the " Little Queen " , 76 years old, Diagnosed

with LBD in the fall of 2007, currently taking Avapro, Aricept, Risperdal,

Foltrin, Verapamil ER, Nexium, Prednisone, Ketoprofen and Boneva.

<<snip>> Yes, Dad was quite depressed when we received her initial diagnosis.

But with love and care and explanation and understanding and reading, he has

accepted that Mom is NOT going to get any better, and he holds no illusions

as to her condition. It took a lot of support and education, but he is now

where he should be. He is preparing for the inevitable, and doing a wonderful

job for a man of 84 years of age. He is incredibly patient with her, he

understands that she has no control over the strange things she does, and I

still

hold with my decision to be honest and open with him. What anyone else decides

to do is their own business.<<SNIP>>

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)