I thought I would write a quick blog about our experience with dad having a PEG tube fitted as there have been quite a few blogs on it lately.
Dad was diagnosed in 2005, we think fairly early on in the disease but I dont think you can ever really tell. For the first 3 years it wasnt too bad. He could still walk a bit (aided) still eat and still talk. My dad was one of those people that never stopped talking (I can remember many a time telling him to stop!) and was always eating! I think my dads two favourite pleasures in life (aside from his family) were eating and talking! Especially about football and his beloved Leyton Orient. Then we noticed he started to struggle to swallow and he had a tendency to 'shovel' in his food - which didnt help the coughing. The coughing turned to occasional vomiting whilst eating and his weight was going down fairly quickly. We were advised to have a PEG tube fitted whilst he was still able to eat a bit.
It was fitted in May 2008. At first it wasnt too bad because he was still able to enjoy some food by mouth. However (and I still now get really upset to think of this) i can still see his face when he no longer could eat and every morning he was just 'hooked' upto a feeding machine like a robot. His face was very 'flat' - one more of his passions was taken away from him. If we went to their house there was a constant 'whirring' of the machine always present.
He regulalry pulled it out which meant lots and lots of visits back to hospital. It got infected. He lost loads and loads of weight. He spent the majority of the last two years of his life in and out of hospital. Once when they couldnt get him back in to theatre he had a tube put down his nose, and because he continously pulled that out as well he had to have 'boxing' gloves on - it was awful.
With hindsight I would not want to put him through that - the thought that someone slowly starveS to death is not that appealing either - but in some ways I feel it just kept him alive - no real quality of life.
Once he could no longer speak that was the end really. I know we had dad a few years longer beacuse of the feeding tube but not sure he wanted it that way. I miss him every minute of every day but I keep positive by thinking that he's now at some huge banquet eating and talking to his hearts content xx