Re: How much should the elderly MSA patient betold

[Guest guest]

To Barb Stanley

I also agree your father should not be kept in the dark about his condition.

Depending on the degree of his dementia, he could be told in as straightforward and unvarnished way as possible. At 75 years there is not much he hasn't figured out. He should also have the option of knowing the outcome as he may have things he wants to say to certain loved ones and otherwise get his affairs in order."

Barb POnd

[Guest guest]

I can say, that whether the patient be myself, my husband or one of our sons, I think that the patient should know all of the details.

What do you gain by keeping the patient in the dark? Your dad may well be wondering what is happening to him? Why won't his wife and child talk to him?

You are the ones he has depended upon for years for the truth and now at the what may be greatest step in his life, you may well be keeping secrets.

My thoughts,

Marilyn in TN

Reply-To: shydrager

Date: Tue, 28 May 2002 18:26:29 -0400

To: <shydrager >

Subject: How much should the elderly MSA patient betold

All - Thanks you for the information and encouragement. Being relatively new to MSA, I have countless questions and will try not to make a pest of myself. However, the most pressing question at this time is whether or not to tell my dad, who is 75, that he has MSA. He's been in a nursing home for about two weeks and is undergoing therapy. Our hope would be to bring him at some point, but don't know if that will happen - his doctor doesn't think so. Anyway, he is in reasonable good spirits most of the time and we don't want to depress him - he does have some dementia, but is alert about 75% of the time. He is immobile and today had to be placed on oxygen for most of the day, and had a catheter put in as he is no longer able to urinate. Knowing that the decision is ultimately my moms, we would appreciate some opinions as to whether or not to tell him the seriousness of his condition.

Thanks

Barb S. in land

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[Guest guest]

Marilyn,

I agree with you in most cases. There may be some extenuating cases

where a few should not be told, but I can not think of any at this

time. The patient may worry themself into an earlier grave by not

knowing. There are legal things that should also be taken care of as

early as possible. Charlotte knew in 1995 that she had MSA and lived

until late 2001.

Take care, Bill Werre

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

and Marilyn wrote:

> I can say, that whether the patient be myself, my husband or one of

> our sons, I think that the patient should know all of the details.

>

> What do you gain by keeping the patient in the dark? Your dad may

> well be wondering what is happening to him? Why won't his wife and

> child talk to him?

>

> You are the ones he has depended upon for years for the truth and now

> at the what may be greatest step in his life, you may well be keeping

> secrets.

>

> My thoughts,

>

> Marilyn in TN

[Guest guest]

It may be that you can find a way to inform your father about the basics of

his illness without giving him unnecessary and unfortunately disheartening

details regarding the probable stages of degenerative changes related to his

actual prognosis. In short, he probably ought to know that he has a

terminal condition -- but he may not need or wish to be told all of the

expected complication unless he specifically asks or at least until he

encounters them and wants explanations/details. At his age, he probably

already has reasonable expectations of his own impending mortality, with or

without the confirmation that he has a terminal illness. He may not want or

need to know more than that, but it should probably be his choice to ask or

not ask.

Jerry Cash

Re: How much should the elderly MSA patient betold

Marilyn,

I agree with you in most cases. There may be some extenuating cases

where a few should not be told, but I can not think of any at this

time. The patient may worry themself into an earlier grave by not

knowing. There are legal things that should also be taken care of as

early as possible. Charlotte knew in 1995 that she had MSA and lived

until late 2001.

Take care, Bill Werre

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

and Marilyn wrote:

> I can say, that whether the patient be myself, my husband or one of

> our sons, I think that the patient should know all of the details.

>

> What do you gain by keeping the patient in the dark? Your dad may

> well be wondering what is happening to him? Why won't his wife and

> child talk to him?

>

> You are the ones he has depended upon for years for the truth and now

> at the what may be greatest step in his life, you may well be keeping

> secrets.

>

> My thoughts,

>

> Marilyn in TN

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

I firmly believe once you are an adult, you should be

treated that way. You might however point out that some people with

MSA live with it for twenty years or more, that would make him 100.

I would be insulted if someone withheld information from me on the basis

they felt I was incompetent.

At 5/29/02 01:15 PM Wednesday, you wrote:

It may be that you can find a way

to inform your father about the basics of

his illness without giving him unnecessary and unfortunately

disheartening

details regarding the probable stages of degenerative changes related to

his

actual prognosis. In short, he probably ought to know that he has

a

terminal condition -- but he may not need or wish to be told all of

the

expected complication unless he specifically asks or at least until

he

encounters them and wants explanations/details. At his age, he

probably

already has reasonable expectations of his own impending mortality, with

or

without the confirmation that he has a terminal illness. He may not

want or

need to know more than that, but it should probably be his choice to ask

or

not ask.

Jerry Cash

Re: How much should the elderly MSA patient

betold

Marilyn,

I agree with you in most cases. There may be some extenuating

cases

where a few should not be told, but I can not think of any at this

time. The patient may worry themself into an earlier grave by

not

knowing. There are legal things that should also be taken care of

as

early as possible. Charlotte knew in 1995 that she had MSA and

lived

until late 2001.

Take care, Bill Werre

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

and Marilyn wrote:

> I can say, that whether the patient be myself, my husband or one

of

> our sons, I think that the patient should know all of the

details.

>

> What do you gain by keeping the patient in the dark? Your dad

may

> well be wondering what is happening to him? Why won't his wife

and

> child talk to him?

>

> You are the ones he has depended upon for years for the truth and

now

> at the what may be greatest step in his life, you may well be

keeping

> secrets.

>

> My thoughts,

>

> Marilyn in TN

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

I firmly believe once you are an adult, you should be

treated that way. You might however point out that some people with

MSA live with it for twenty years or more, that would make him 100.

I would be insulted if someone withheld information from me on the basis

they felt I was incompetent.

At 5/29/02 01:15 PM Wednesday, you wrote:

It may be that you can find a way

to inform your father about the basics of

his illness without giving him unnecessary and unfortunately

disheartening

details regarding the probable stages of degenerative changes related to

his

actual prognosis. In short, he probably ought to know that he has

a

terminal condition -- but he may not need or wish to be told all of

the

expected complication unless he specifically asks or at least until

he

encounters them and wants explanations/details. At his age, he

probably

already has reasonable expectations of his own impending mortality, with

or

without the confirmation that he has a terminal illness. He may not

want or

need to know more than that, but it should probably be his choice to ask

or

not ask.

Jerry Cash

Re: How much should the elderly MSA patient

betold

Marilyn,

I agree with you in most cases. There may be some extenuating

cases

where a few should not be told, but I can not think of any at this

time. The patient may worry themself into an earlier grave by

not

knowing. There are legal things that should also be taken care of

as

early as possible. Charlotte knew in 1995 that she had MSA and

lived

until late 2001.

Take care, Bill Werre

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

and Marilyn wrote:

> I can say, that whether the patient be myself, my husband or one

of

> our sons, I think that the patient should know all of the

details.

>

> What do you gain by keeping the patient in the dark? Your dad

may

> well be wondering what is happening to him? Why won't his wife

and

> child talk to him?

>

> You are the ones he has depended upon for years for the truth and

now

> at the what may be greatest step in his life, you may well be

keeping

> secrets.

>

> My thoughts,

>

> Marilyn in TN

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Hi Aletta,

Sure, in an ideal world all adults would be emotionally capable of handling the information we all know

he now faces in terms of his medical condition -- and should be told (actually first party by the physician who diagnosed). Unfortunately, her father may have emotional limitations that his physician has apparently already taken into consideration inasmuch as he was not given the same information the daughter was given. At this point, she can decide that question for her father - or she could simply ask him if wants "all the truth and nothing but the truth".

Regards,

Jerry Cash

[Jerry Cash] -----Original Message-----From: Aletta Mes Sent: Wednesday, May 29, 2002 3:55 PMTo: shydrager Subject: RE: How much should the elderly MSA patient betold

I firmly believe once you are an adult, you should be treated that way. You might however point out that some people with MSA live with it for twenty years or more, that would make him 100. I would be insulted if someone withheld information from me on the basis they felt I was incompetent.At 5/29/02 01:15 PM Wednesday, you wrote:

It may be that you can find a way to inform your father about the basics ofhis illness without giving him unnecessary and unfortunately dishearteningdetails regarding the probable stages of degenerative changes related to hisactual prognosis. In short, he probably ought to know that he has aterminal condition -- but he may not need or wish to be told all of theexpected complication unless he specifically asks or at least until heencounters them and wants explanations/details. At his age, he probablyalready has reasonable expectations of his own impending mortality, with orwithout the confirmation that he has a terminal illness. He may not want orneed to know more than that, but it should probably be his choice to ask ornot ask.Jerry Cash-----Original Message-----From: Werre Sent: Wednesday, May 29, 2002 3:04 PMTo: shydrager Subject: Re: How much should the elderly MSA patient betoldMarilyn,I agree with you in most cases. There may be some extenuating caseswhere a few should not be told, but I can not think of any at thistime. The patient may worry themself into an earlier grave by notknowing. There are legal things that should also be taken care of asearly as possible. Charlotte knew in 1995 that she had MSA and liveduntil late 2001.Take care, Bill Werre--------------------------------- and Marilyn wrote:> I can say, that whether the patient be myself, my husband or one of> our sons, I think that the patient should know all of the details.>> What do you gain by keeping the patient in the dark? Your dad may> well be wondering what is happening to him? Why won't his wife and> child talk to him?>> You are the ones he has depended upon for years for the truth and now> at the what may be greatest step in his life, you may well be keeping> secrets.>> My thoughts,>> Marilyn in TNIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi Aletta,

Sure, in an ideal world all adults would be emotionally capable of handling the information we all know

he now faces in terms of his medical condition -- and should be told (actually first party by the physician who diagnosed). Unfortunately, her father may have emotional limitations that his physician has apparently already taken into consideration inasmuch as he was not given the same information the daughter was given. At this point, she can decide that question for her father - or she could simply ask him if wants "all the truth and nothing but the truth".

Regards,

Jerry Cash

[Jerry Cash] -----Original Message-----From: Aletta Mes Sent: Wednesday, May 29, 2002 3:55 PMTo: shydrager Subject: RE: How much should the elderly MSA patient betold

I firmly believe once you are an adult, you should be treated that way. You might however point out that some people with MSA live with it for twenty years or more, that would make him 100. I would be insulted if someone withheld information from me on the basis they felt I was incompetent.At 5/29/02 01:15 PM Wednesday, you wrote:

It may be that you can find a way to inform your father about the basics ofhis illness without giving him unnecessary and unfortunately dishearteningdetails regarding the probable stages of degenerative changes related to hisactual prognosis. In short, he probably ought to know that he has aterminal condition -- but he may not need or wish to be told all of theexpected complication unless he specifically asks or at least until heencounters them and wants explanations/details. At his age, he probablyalready has reasonable expectations of his own impending mortality, with orwithout the confirmation that he has a terminal illness. He may not want orneed to know more than that, but it should probably be his choice to ask ornot ask.Jerry Cash-----Original Message-----From: Werre Sent: Wednesday, May 29, 2002 3:04 PMTo: shydrager Subject: Re: How much should the elderly MSA patient betoldMarilyn,I agree with you in most cases. There may be some extenuating caseswhere a few should not be told, but I can not think of any at thistime. The patient may worry themself into an earlier grave by notknowing. There are legal things that should also be taken care of asearly as possible. Charlotte knew in 1995 that she had MSA and liveduntil late 2001.Take care, Bill Werre--------------------------------- and Marilyn wrote:> I can say, that whether the patient be myself, my husband or one of> our sons, I think that the patient should know all of the details.>> What do you gain by keeping the patient in the dark? Your dad may> well be wondering what is happening to him? Why won't his wife and> child talk to him?>> You are the ones he has depended upon for years for the truth and now> at the what may be greatest step in his life, you may well be keeping> secrets.>> My thoughts,>> Marilyn in TNIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi Aletta,

Sure, in an ideal world all adults would be emotionally capable of handling the information we all know

he now faces in terms of his medical condition -- and should be told (actually first party by the physician who diagnosed). Unfortunately, her father may have emotional limitations that his physician has apparently already taken into consideration inasmuch as he was not given the same information the daughter was given. At this point, she can decide that question for her father - or she could simply ask him if wants "all the truth and nothing but the truth".

Regards,

Jerry Cash

[Jerry Cash] -----Original Message-----From: Aletta Mes Sent: Wednesday, May 29, 2002 3:55 PMTo: shydrager Subject: RE: How much should the elderly MSA patient betold

I firmly believe once you are an adult, you should be treated that way. You might however point out that some people with MSA live with it for twenty years or more, that would make him 100. I would be insulted if someone withheld information from me on the basis they felt I was incompetent.At 5/29/02 01:15 PM Wednesday, you wrote:

It may be that you can find a way to inform your father about the basics ofhis illness without giving him unnecessary and unfortunately dishearteningdetails regarding the probable stages of degenerative changes related to hisactual prognosis. In short, he probably ought to know that he has aterminal condition -- but he may not need or wish to be told all of theexpected complication unless he specifically asks or at least until heencounters them and wants explanations/details. At his age, he probablyalready has reasonable expectations of his own impending mortality, with orwithout the confirmation that he has a terminal illness. He may not want orneed to know more than that, but it should probably be his choice to ask ornot ask.Jerry Cash-----Original Message-----From: Werre Sent: Wednesday, May 29, 2002 3:04 PMTo: shydrager Subject: Re: How much should the elderly MSA patient betoldMarilyn,I agree with you in most cases. There may be some extenuating caseswhere a few should not be told, but I can not think of any at thistime. The patient may worry themself into an earlier grave by notknowing. There are legal things that should also be taken care of asearly as possible. Charlotte knew in 1995 that she had MSA and liveduntil late 2001.Take care, Bill Werre--------------------------------- and Marilyn wrote:> I can say, that whether the patient be myself, my husband or one of> our sons, I think that the patient should know all of the details.>> What do you gain by keeping the patient in the dark? Your dad may> well be wondering what is happening to him? Why won't his wife and> child talk to him?>> You are the ones he has depended upon for years for the truth and now> at the what may be greatest step in his life, you may well be keeping> secrets.>> My thoughts,>> Marilyn in TNIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Thanks for your kind remarks. I an glad to see that some others agree if

not completly then at least somewhat.. If the patient were me, I would

worry myself into an early grave trying to figure out why people would not

tell me what is going on.

Marilyn

>

> Reply-To: shydrager

> Date: Wed, 29 May 2002 16:03:34 -0400

> To: shydrager

> Subject: Re: How much should the elderly MSA patient betold

>

> Marilyn,

>

> I agree with you in most cases. There may be some extenuating cases

> where a few should not be told, but I can not think of any at this

> time. The patient may worry themself into an earlier grave by not

> knowing. There are legal things that should also be taken care of as

> early as possible. Charlotte knew in 1995 that she had MSA and lived

> until late 2001.

>

> Take care, Bill Werre

>

> ---------------------------------

>

> and Marilyn wrote:

>

>> I can say, that whether the patient be myself, my husband or one of

>> our sons, I think that the patient should know all of the details.

>>

>> What do you gain by keeping the patient in the dark? Your dad may

>> well be wondering what is happening to him? Why won't his wife and

>> child talk to him?

>>

>> You are the ones he has depended upon for years for the truth and now

>> at the what may be greatest step in his life, you may well be keeping

>> secrets.

>>

>> My thoughts,

>>

>> Marilyn in TN

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>