Re: From Raquel -Is this the end?

September 18, 2008

My experience with hospice was wonderful. My grandmother lived with me and

I utilized their services right to the end - in fact, they were with us as

she left this world, gently. We didn't do anything to prolong life (such as

IV's or feeding tubes), and they made sure that her pain and discomfort were

well-managed. Without this I have no doubt that her passing would have been

difficult for her; with their help, she simply dozed off and slipped away.

(She was 94 and lucid/cognitive right up to the end, her systems simply

started shutting down.) In spite of the lack of hydration and nourishment,

she felt no pain.

End of this life issues are difficult and families handle it differently.

Our family isn't a " life at any cost " family, and those of us who know

Christ I think would be disappointed if our union with Him and our healthy

new bodies were delayed any longer than necessary . But it is a sensitive

issue and I'm so glad that you have the comfort of knowing Sherman's wishes

in this regard, and your eventual reunion .

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

----- Original Message -----

Dear friends, yesterday I was called from the NH by the speech therapist and

told that Sherman doesn't want to eat and he can't swallow most of anything

anymore. He asked me what I wanted to be done. Sherman and I talked about

this many years ago, when his father was taken to the ER with heart failure

and was intubated before my MIL could get there and tell them that he didn't

want that. He had been in and out of the hospital several times in the

previous months, and just a couple of days before he had told her that if

that happened again, he didn't want any extreme measures so save him. After

he was admitted to the hospital, the family talked to the doctors and got

them to pull out the tube, but it had done so much damage that his throat

and mouth were constantly full of blood and he had a long and painful agony

for over two weeks. After being there, we decided that if that or anything

similar happened to one of us we wouldn't want tubes or anything

that would make suffer just a little longer, and promised each other that

we'd respect the other wishes. A few months ago, we both signed our Health

Care Directives, Sherman naming me as his agent and I naming one of our sons

as mine. So when I was asked that question, my answer was, " No feeding

tube! " , just try to give him what he wants and make sure he swallows. I felt

bad about that but at peace knowing that that is what he would want. Later,

the speech therapist made me sign a paper releasing the NH from any

responsibility if something happens to him.

Neither one of us is afraid of dying -in fact, a few months ago he told me

he felt the end was close and he was looking forward to seeing all his LO

who have passed away and to doing some work on the other side. We know where

we are going and that that is a much better place than this world. We know

we are eternal companions and that, thanks to our Lord's resurrection, we

will be able to get our bodies back in full health and beauty and have our

family with us for eternity. So there is no fear in us -rather joyful

anticipation.

Now, back to Sherman's condition. Do you think he's gotten to the final

stage of LBD? (That's the Dr's opinion) Should I ask for an IV to keep him

hydrated or just let the illness take its normal (it's there anything

" normal " in LBD?) course? Anything they do will add to his suffering and

probably to the length of his life/barely existence. Should I get Hospice

and let them advise me? I haven't yet done that. Is there any difference

between one or the other, or are all hospices about the same?

Please advise according to your own experiences! I'm looking forward to your

answers and thanking you in advance. You are my pillar of strength. My love

to all,

Raquel

September 18, 2008

Dear Raquel,

This is a most difficult time to go through. Thankfully you know Sherman's

wishes and are

prepared to do what you know he would want. An IV will prolong the lingering,

possibly

for a long long time. Personally, knowing Mom's wishes were to do nothing to

prolong life

but just to keep her comfortable, we continued to offer food and drink at the

end. She just

took less and less over a 6 week period, then 3 weeks of eating, drinking almost

nothing.

She was on a small amount of morphine at the end and seemed comfortable.

My fil died of cancer, couldn't eat. A feeding tube was inserted, ended up

causing

irritation and inflammation of his vocal chords so that he needed a tracheotomy

to

breathe. That must have been so uncomfortable, although he seemed OK with it all

before

he became comatose.

You know in your heart what is best for your dear Sherman. Follow your heart

for him. I

am sorry you must now deal with this.

Gibsons BC

Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD.

>

> Dear friends, yesterday I was called from the NH by the speech therapist and

told that

Sherman doesn't want to eat and he can't swallow most of anything anymore. He

asked me

what I wanted to be done. Sherman and I talked about this many years ago, when

his

father was taken to the ER with heart failure and was intubated before my MIL

could get

there and tell them that he didn't want that. He had been in and out of the

hospital several

times in the previous months, and just a couple of days before he had told her

that if that

happened again, he didn't want any extreme measures so save him. After he was

admitted

to the hospital, the family talked to the doctors and got them to pull out the

tube, but it

had done so much damage that his throat and mouth were constantly full of blood

and he

had a long and painful agony for over two weeks. After being there, we decided

that if

that or anything similar happened to one of us we wouldn't want tubes or

anything

> that would make suffer just a little longer, and promised each other that

we'd respect

the other wishes. A few months ago, we both signed our Health Care Directives,

Sherman

naming me as his agent and I naming one of our sons as mine. So when I was asked

that

question, my answer was, " No feeding tube! " , just try to give him what he wants

and make

sure he swallows. I felt bad about that but at peace knowing that that is what

he would

want. Later, the speech therapist made me sign a paper releasing the NH from any

responsibility if something happens to him.

> Neither one of us is afraid of dying -in fact, a few months ago he told me he

felt the end

was close and he was looking forward to seeing all his LO who have passed away

and to

doing some work on the other side. We know where we are going and that that is a

much

better place than this world. We know we are eternal companions and that, thanks

to our

Lord's resurrection, we will be able to get our bodies back in full health and

beauty and

have our family with us for eternity. So there is no fear in us -rather

joyful anticipation.

> Now, back to Sherman's condition. Do you think he's gotten to the final stage

of LBD?

(That's the Dr's opinion) Should I ask for an IV to keep him hydrated or just

let the illness

take its normal (it's there anything " normal " in LBD?) course? Anything they do

will add to

his suffering and probably to the length of his life/barely existence. Should I

get Hospice

and let them advise me? I haven't yet done that. Is there any difference between

one or the

other, or are all hospices about the same?

> Please advise according to your own experiences! I'm looking forward to your

answers

and thanking you in advance. You are my pillar of strength. My love to all,

> Raquel

>

September 18, 2008

Raquel: I am glad that you know his wishes and that he was able to talk with

you about it. If he has indicated he thinks the end is coming and isn't

uncomfortable about it, it appears that he is ready.

In my husband's case, although we had signed living wills long ago, we had never

done DNRs. Throughout the later part of the illness, I was asked many times to

do it, and just couldn't face it, and by that time, he was too far gone to know

what it was. After two hospitalizations for severe infection, the doctors told

me the could do nothing more for him and sent him back to the NH. Once there,

Hospice and the NH staff really pushed me to sign the DNR for him, which I

finally did. They indicated he was very near death and thought it would be that

day, and they began to withhold food and water. However, it wasn't that day nor

for four more days that I had to watch him what I thought was suffering, but

they said it wasn't. He was on morphine and oxygen and his mouth was swabbed.

The hardest thing I have ever done was to make that decision, as I felt I was

playing God. I knew he would never get better, and I knew he was ready to go,

the kids

agreed, so that's what happened. He was asleep most of the time but would cry

out when they moved him very frequently. I think he waited until our middle

daughter got there at 3 p.m. on Saturday, and then at about 9:30 that night,

after all the family that could come had been there. he slipped away. They

insisted there was no discomfort.

If you and he both are comfortable with the the decision, I would probably go

ahead and call Hospice. Of course, they will not do anything to prolong his

life, and will try to do all they can to make things comfortable for him. If

there was any chance for recovery, it would be an easy decision to do as much as

possible, but there isn't, so we know there is no point in keeping someone

artifically alive.

Whatever you decide, know that everyone is with you on your decision.

June C.

Subject: From Raquel -Is this the end?

To: LBDcaregivers

Date: Thursday, September 18, 2008, 11:41 AM

Dear friends, yesterday I was called from the NH by the speech therapist and

told that Sherman doesn't want to eat and he can't swallow most of anything

anymore. He asked me what I wanted to be done. Sherman and I talked about this

many years ago, when his father was taken to the ER with heart failure and was

intubated before my MIL could get there and tell them that he didn't want that.

He had been in and out of the hospital several times in the previous months, and

just a couple of days before he had told her that if that happened again, he

didn't want any extreme measures so save him. After he was admitted to the

hospital, the family talked to the doctors and got them to pull out the tube,

but it had done so much damage that his throat and mouth were constantly full of

blood and he had a long and painful agony for over two weeks. After being there,

we decided that if that or anything similar happened to one of us we wouldn't

want tubes or anything

that would make suffer just a little longer, and promised each other that we'd

respect the other wishes. A few months ago, we both signed our Health Care

Directives, Sherman naming me as his agent and I naming one of our sons as mine.

So when I was asked that question, my answer was, " No feeding tube! " , just try

to give him what he wants and make sure he swallows. I felt bad about that but

at peace knowing that that is what he would want. Later, the speech therapist

made me sign a paper releasing the NH from any responsibility if something

happens to him.

Neither one of us is afraid of dying -in fact, a few months ago he told me he

felt the end was close and he was looking forward to seeing all his LO who have

passed away and to doing some work on the other side. We know where we are going

and that that is a much better place than this world. We know we are eternal

companions and that, thanks to our Lord's resurrection, we will be able to get

our bodies back in full health and beauty and have our family with us for

eternity. So there is no fear in us -rather joyful anticipation.

Now, back to Sherman's condition. Do you think he's gotten to the final stage of

LBD? (That's the Dr's opinion) Should I ask for an IV to keep him hydrated or

just let the illness take its normal (it's there anything " normal " in LBD?)

course? Anything they do will add to his suffering and probably to the length of

his life/barely existence. Should I get Hospice and let them advise me? I

haven't yet done that. Is there any difference between one or the other, or are

all hospices about the same?

Please advise according to your own experiences! I'm looking forward to your

answers and thanking you in advance. You are my pillar of strength. My love to

all,

Raquel

September 18, 2008

Raquel,

I completely agree with . I would encourage you to NOT offer

IV hydration to Sherman. The human body can be kept alive a long

time on water alone. Definitely offer ice chips, popsicle bits, and

food as a comfort measure to Sherman (to be taken orally).

If Sherman has decided on brain donation, be sure all the

arrangements have been made and give a heads-up to the brain bank (or

the person/company doing the tissue procurement).

Best wishes,

Robin

> >

> > Dear friends, yesterday I was called from the NH by the speech

therapist and told that

> Sherman doesn't want to eat and he can't swallow most of anything

anymore. He asked me

> what I wanted to be done. Sherman and I talked about this many

years ago, when his

> father was taken to the ER with heart failure and was intubated

before my MIL could get

> there and tell them that he didn't want that. He had been in and

out of the hospital several

> times in the previous months, and just a couple of days before he

had told her that if that

> happened again, he didn't want any extreme measures so save him.

After he was admitted

> to the hospital, the family talked to the doctors and got them to

pull out the tube, but it

> had done so much damage that his throat and mouth were constantly

full of blood and he

> had a long and painful agony for over two weeks. After being there,

we decided that if

> that or anything similar happened to one of us we wouldn't want

tubes or anything

> > that would make suffer just a little longer, and promised each

other that we'd respect

> the other wishes. A few months ago, we both signed our Health Care

Directives, Sherman

> naming me as his agent and I naming one of our sons as mine. So

when I was asked that

> question, my answer was, " No feeding tube! " , just try to give

him what he wants and make

> sure he swallows. I felt bad about that but at peace knowing that

that is what he would

> want. Later, the speech therapist made me sign a paper releasing

the NH from any

> responsibility if something happens to him.

> > Neither one of us is afraid of dying -in fact, a few months ago

he told me he felt the end

> was close and he was looking forward to seeing all his LO who have

passed away and to

> doing some work on the other side. We know where we are going and

that that is a much

> better place than this world. We know we are eternal companions and

that, thanks to our

> Lord's resurrection, we will be able to get our bodies back in full

health and beauty and

> have our family with us for eternity. So there is no fear in us -

rather joyful anticipation.

> > Now, back to Sherman's condition. Do you think he's gotten to the

final stage of LBD?

> (That's the Dr's opinion) Should I ask for an IV to keep him

hydrated or just let the illness

> take its normal (it's there anything " normal " in LBD?) course?

Anything they do will add to

> his suffering and probably to the length of his life/barely

existence. Should I get Hospice

> and let them advise me? I haven't yet done that. Is there any

difference between one or the

> other, or are all hospices about the same?

> > Please advise according to your own experiences! I'm looking

forward to your answers

> and thanking you in advance. You are my pillar of strength. My love

to all,

> > Raquel

> >

September 18, 2008

Raquel, We haven't gotten to Sherman's state yet. I know there are thickened

drinks that are good for them, such as " Ensure " that will slide down and

that is better than solids that he can't handle.

Don and I are in the same frame of mind as you, no tubes, and we too will be

together for eternity. But, I would keep him comfortable. It has been said

that dying people are in a great deal of pain as the organs shut down. MY plan

is to give big doses of Morphine. I know they say not for LBD. He is dying,

and what difference does it make if he is given enough to offset any

reaction, but would keep him quiet and comfortable. My sister had it when she

was

dying and it made all the difference in the world.

Raquel, I am terribly sorry. So sorry dear. (((((Raquel))))))

I love you and am holding you hand through cyber space.

Imogene

In a message dated 9/18/2008 11:42:10 AM Central Daylight Time,

la.melense@... writes:

Dear friends, yesterday I was called from the NH by the speech therapist and

told that Sherman doesn't want to eat and he can't swallow most of anything

anymore. He asked me what I wanted to be done. Sherman and I talked about

this many years ago, when his father was taken to the ER with heart failure and

was intubated before my MIL could get there and tell them that he didn't want

that. He had been in and out of the hospital several times in the previous

months, and just a couple of days before he had told her that if that happened

again, he didn't want any extreme measures so save him. After he was

admitted to the hospital, the family talked to the doctors and got them to pull

out

the tube, but it had done so much damage that his throat and mouth were

constantly full of blood and he had a long and painful agony for over two

weeks.

After being there, we decided that if that or anything similar happened to one

of us we wouldn't want tubes or anything

that would make suffer just a little longer, and promised each other that

we'd respect the other wishes. A few months ago, we both signed our Health Care

Directives, Sherman naming me as his agent and I naming one of our sons as

mine. So when I was asked that question, my answer was, " No feeding tube! " ,

just try to give him what he wants and make sure he swallows. I felt bad about

that but at peace knowing that that is what he would want. Later, the speech

therapist made me sign a paper releasing the NH from any responsibility if

something happens to him.

Neither one of us is afraid of dying -in fact, a few months ago he told me

he felt the end was close and he was looking forward to seeing all his LO who

have passed away and to doing some work on the other side. We know where we

are going and that that is a much better place than this world. We know we are

eternal companions and that, thanks to our Lord's resurrection, we will be

able to get our bodies back in full health and beauty and have our family with

us for eternity. So there is no fear in us -rather joyful anticipation.

Now, back to Sherman's condition. Do you think he's gotten to the final

stage of LBD? (That's the Dr's opinion) Should I ask for an IV to keep him

hydrated or just let the illness take its normal (it's there anything " normal "

in

LBD?) course? Anything they do will add to his suffering and probably to the

length of his life/barely existence. Should I get Hospice and let them advise

me? I haven't yet done that. Is there any difference between one or the

other, or are all hospices about the same?

Please advise according to your own experiences! I'm looking forward to your

answers and thanking you in advance. You are my pillar of strength. My love

to all,

Raquel

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September 18, 2008