Hi this is my first time here - my mum is 77 years old and has Parkinsons.
Whilst recent stay in hospital almost at the point of discharge it was discovered she had a problem
with swallowing in fact its turned out to be so bad that she is nil by month completly now.
She has agreed to opt for the PEG feeding - and in fact its happening this afternoon.
I keep asking questions about how things will work (if) (when) she gets home but feel at
the moment i am up against a brick wall.  Everyone keeps telling her when you get home this and when you
get home that - but i just dont know how easy or difficult it will be for her to manage this - im willing to help
when i can - but suppose this will all be looked at after the procedure done - nurses keep telling me im looking
too far ahead…...
Biggest problem i have at the moment is my mum keeps taking a sip of the iced water they leave on her table
think she resists to the point where she can no longer cope with the pink sponge (lollipop things) and takes
a sip.    Is there any other products out there that can leave the mouth feeling cool/refreshed without the
need for a sip of water…  speach therapist suggested the pineapple thing but just wondered if any thing else
I feel so sorry for my mum at the moment - it must be awful being in a room where people are eating meals, getting
cups of tea etc etc - and the ward is really hot - and instinct tells her that a few sips of the iced water is what she
needs.  Ive not got the heart to stop her
anyone out there got any suggestions - tips - advise -
At first i thought this was a good way forward for my mum - but now realising there is a bit more to it
i think she fully understands the implications etc as when she talks about it she says she really has no choice
and she has to try it - but she lapses into conversations where diaticians have said she can still have breakfast dinner and lunch you just cook the stuff heat it up - thats where the conversation ends…..
for the last few weeks she has had the tube via her nose - and everyone says the PEG tube is better
can anyone explain why its better?? in relation to food and medication.
a bit about myself im 47 on my own and have no brothers or sisters - i have a 11 year old daughter.

Hey,

I’m sorry to hear about your mum, I hope you’re all managing best you can .. it can’t be easy.

I am meant to be totally nil by mouth to and I can sympathies with what’s happening for your mum. However .. (please don’t take this the wrong way, and you should always follow your Dr’s advice, blah blah blah) .. she’s 77, she has children, grandchild .. she’s got a horrible disease that will progress and now she can’t eat, there would have come a point where her physical ability to eat slips away. So let her sip ice water! She know’s what the risk is, she knows the its not the best idea .. but all these things make life such hard work, constantly living in a world you can’t take part in any more, it sucks! I’m not saying she would have a three course meal, or even a glass full of water .. but let her suck an ice cube, give her an ice lolly to share with your daughter, get some thickener from your speech therapist and learn together how to make the odd smoothy or something. You want to enjoy all the time you have left together, so enjoy it!

Good luck, to all of you :)

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