Print

Print


Marcia,

If you ask John Cottingham to search the archives, I remember many
discussions over the years about this stage that is often reached by PD
patients.  My Dad had a G-tube put in about 4 years ago.  Now, I'm not in
the medical profession, so I don't know what a PEG tube is.  A G tube is for
Gastro. tube feeding directly into the stomach.  My Dad is now 79, PD for
about 35 years.  It's been a slow progression, with some defining moments,
and one of them was when we realized that he was slowly starving to death.

Our family agrees that this was the right move to make.  None of us could
bear to just watch him starve to death, and none of us define our lives as
worth living solely on our ability to EAT.  (Although sometimes I feel like
all I do is cook and eat and clean the kitchen!)  It IS invasive.  It has
brought home health providers into my Mom's life for the first time, and
that has been a good resource to add to Dad's care.  They need to be
replaced periodically, but most of the care has been out-patient.

Dad can still eat by mouth, but it causes saliva production and increased
drooling and we don't let him do it too often.  Occasional smooshy ice
cream, root beer - I made strawberry soup today - and it is sometimes hard
on him.  We have all agreed to partake in particularly tempting foods away
from home - like popcorn, which could be fatal.   Don't tell my Mom, but I
let him chew on a peach to other day and he tasted and spit and only
swallowed juice.

He gets his meds and nutrition all thru the tube.  We have all learned how
to do it.  Grandchildren, starting at about 10 - 12 , if interested, have
been taught, and this gives my Mom a break and gives them interaction with
Grandpa.   Does he wish he had starved to death 4 years ago?   Well,  my
daughter wasn't born yet - and I think it was worth it to him to meet that
pistol, and let her play "doctor"  and watch videos with him.  She has
taught him some computer games.  He reads, watches TV, talks to us, goes on
boat rides when his walking is good.

Now we sometimes wonder how long we have with him, and what will be the
episode that causes his death - probably aspiration or pneumonia - or
whatever.  But I'm glad we chose to keep him with us for these last 4 years.

Sara Byron
daughter of Richard, 79 PD since 1969.
 ----------
Good morning to you all.  Yesterday I came home from a very unsettling visit
with my parents in Cincinnati.  My dad is 79 pd 9 yrs.  In the 2 weeks since
I have seen him he has lost so much weight.  He looked like the some of the
pictures from the concentration camps.  Mother says he has not been able to
eat
or drink except in very limited amounts.  I called the neuro who wants his
internist to see about a barium swallow and then a PEG.  I know there has
been
discussion on the list about this before.  Would you provide me with some
info on the PEG, what is the procedure, can you still eat when you have it,
etc. etc.  This is so upsetting and my heart goes out to this dear man.  I
hope we can get this taken care of.  Thanks for your input.
Marcia
[log in to unmask]