Re: How do you know 'end stage'

[Guest guest]

Donna

I've no idea how USA hospice works but sounds to me like you should be able

to ask for him to be able to die at home with hospice care coming in.

We never know for sure with LBD when the final days are here.

Death is a mystery - it could come to any of us at any time!

In the last few days of his life my dad was sleeping 24/7, didn't

communicate and had 'dried up' after bouts of the diarrhoea.

In the last 24 hours he had VERY shallow breathing, looked grey in pallor

and didn't swallow. The breathing was rapid and whisper like. My dad looked

like a skeleton - he was so thin and dehydrated. His cheeks were sunken in

and his eyes glazed over.

Hearing is the last sense to go - so talk, cry, whisper, caress, stroke,

hold .... be close and say all those things you want to say.

I'm thinking of you

Sending you hugs

Sally

[Guest guest]

Sally:

You are absolutely correct. When s father was in his last days I

would look out the window of the hospital and describe things that were

going on. He didn't reply to me. came into the room and I told him

to talk to his dad and he ask him how he was doing. His dad said, " Not so

very good. " We couldn't believe it. He died the next day.

in Texas

Re: How do you know 'end stage'

> Donna

> I've no idea how USA hospice works but sounds to me like you should be

able

> to ask for him to be able to die at home with hospice care coming in.

> We never know for sure with LBD when the final days are here.

> Death is a mystery - it could come to any of us at any time!

> In the last few days of his life my dad was sleeping 24/7, didn't

> communicate and had 'dried up' after bouts of the diarrhoea.

> In the last 24 hours he had VERY shallow breathing, looked grey in pallor

> and didn't swallow. The breathing was rapid and whisper like. My dad

looked

> like a skeleton - he was so thin and dehydrated. His cheeks were sunken in

> and his eyes glazed over.

> Hearing is the last sense to go - so talk, cry, whisper, caress, stroke,

> hold .... be close and say all those things you want to say.

> I'm thinking of you

> Sending you hugs

> Sally

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Hospice is wonderful and they can assess your father and help

determine if now is an appropriate time to enter him in the program.

They deal with everything, including a PEG, so don't hesitate to be

in touch with them. My only regret surrounding my father's death is

that I didn't involve hospice which would have been helpful to him

and to our family. I won't hesitate when I believe my mother is

approaching end stage.

Take Care - Deb

> Well I'm starting to think Dad IS at end stage ... he might not

> have been before - but the Haldol catapulted him there now.

>

> He pretty much just sleeps all day. He seems to know we are there

> ...and tries to say a few words here and there but we usually

can't understand him.

>

> He has a PEG (since the Haldol incident) so he's getting food -

> but he still lost 20 pounds in the last 2 months. I think the PEG

> is they only reason he's still alive.

>

> He is incontinent ... and lately mostly diarrhea too !

>

> The only drugs are Sinemet aricept and the antibiotics ... as far

as I know !

>

> Do you think we would be eligable for Hospice ? Can you have a PEG

with

> hospice ?

>

> Please tell me what ever you can - even if its not pretty - so

> I can prepare my self and the family if this is the case !

> They are in complete denial ... thinking he will be getting over

it and coming

> home soon.

>

> We do want to bring him home - but I don't think he'll be walking

and

> sitting on the porch !

>

>

> HUGS

>

> donna

[Guest guest]

Donna-

Well, hmmm...not quite sure where to start. End stage, always baffled me. I

assumed my dad would be in the same situation as your dad, catatonic,

unresponsive, unable to be contacted. Well, even though he had bouts like that,

up until the night before he passed away he was up and walking around. He made

his way to the lounge in the NH and sat comfortably in a recliner. He was mute,

yet comfortable. He looked like skin hanging from bones. He was dreadfully

thin. He had had only less than a cup of a nutrition drink in over 2 weeks. No

other food, no liquids. The morning he passed away he was awake and alert. He

indicated to the nurse that he didn't want to get out of bed. His mouth was

full of a dark, crusty film. His eyes were still big and blue. He had dark

rings under his eyes yet he was content. Hmmmm - sigh - Finally, with a nurse

present, he shut his eyes, and won his battle. He struggled no more.

So, that is my story. We had Hospice intervene a few days before dad passed

away. We were told they could take dad on as a patient, then re-evaluate after

a while. He could be a patient for up to 6 months, then if they felt he no

longer met the requirements they would release him, and could become a patient

again, if needed. If you feel it is time to contact Hospice, I say do so. You

will have no regrets. Also, I feel they may be able to answer some of your

questions.

Please keep me (us) informed.

My prayers are with you, my heart with your heart-

Sandie

Des Moines, IA