Bob,
My father is 78 years old with PD. He was admitted to a hospital about 3
1/2 years ago because of chest pains, up until that time my mom took care
of him at home (It was taking a big toll on her). He went down hill as
soon as he was taken from her care, before entering the hospital he was
still walking (a struggle, but walking) and feeding himself. They did
not get him up out of bed, etc.
A doctor told us that dad was not getting enough food and would have to
be placed on a feeding tube. The doctor told us that he was not giving
up on the hopes that he could improve, we did not know any better and
thought that meant that he would only be on the feeding tube for a short
while (wrong). From the hospital he went to a nursing home and has been
there ever since, with a feeding tube at night.
I'm sick about this decision that we made - I know that dad would not
want to live like this, in fact he asked me if I could help him die,
shortly after entering the nursing home, but I kissed his forehead and
told him I couldn't do that, he hadn't been drifting in and out of
reality, due to medication, maybe I could have had someone document what
he was saying and help grant his wish. I told my mom but she said "I
can't take his feeding tube away now and just let him starve to death".
I wish I had been smart enough (nor one of my 5 bothers or sisters) to
have dad fill write out his wishes long before he had to enter the
nursing home. I live with dad's voice everyday asking me to help him
pass on - but knowing I can do nothing but let him slowly suffer. For a
while after entering the nursing home he could feed himself soft foods, and
then he needed assistance and now I don't believe he is eating any real
food. Mom goes every day to help feed him, if he can eat. He can not
talk at all - he tries once in awhile but it is all gurggly - so he stops
- his fingers are curled up into his hands so he can not write - there is
no way to communicate with him - I don't know how much he understands - I
hope it is not much - but my gut tells me it is more than I think. (it's
hell, excuse me)
I know this is more than you wanted to hear and depressing - but anyone
that is listening - please have your loved ones fill out a living will -
if we had not hooked my dad up to a feeding tube, he may be in a better
place by now.
If there is anyone who knows how I can help my father move on in life,
with out any kind of documentation from him - please let me know!!
Thanks for listening - Bette
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On Mon, 24 Jun 1996, ROBERT NORMAN ADAMS wrote:
> I am not sure if the first message I sent got through-if so ignore this
> message.
> I would appreciate any information you have concerning end stage
> with dementia where the swallowing is so severe as to require a feeding tube
> to stay alive. We would like to know what others have experienced so as
> to better plan for the future.
> thanks. Bob Adams
>
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///// Name: Bette Ford
~O^O~ Message Phone: (360) 694-6981
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