PEG tube - our experience

[Louise-Alabaster]

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

[hazelb]

Hi Louise....there are so many different stories about PEG feeding I think it must be a hard decision to have to make. Frank is still eating reasonably but struggles to open his mouth wide enough some times. I cut his food small & sometimes have to mash it up so he can manage it. He doesn't want me to puree it yet but he does sort of choke sometimes...usually when he's "shovelled" too much into his mouth.I then take over & control his feeding. How much longer we can go on like this, I don't know.

He 's lost weight in the last year or so but as he was overweight I'm not too worried yet...just have to keep an eye on it.

Take care & keep smiling Love Hazel B xx

[Louise-Alabaster in reply to hazelb]

As a treat we froze his favourite tipple - Brandy and American - into ice cubes and used to let him have one - it wasnt very alcoholic but he could still taste it - he used to love that!

But the 'shovelling' thing is odd - we didnt realise that was part of it and used to tell him off - I remember obne day we were in Oizza Hut and the waiter poured out dad a glass of wine, and before he had filled my glass dad had necked the whole lot! I must admit that did make us all laugh! We used to try to make comedy out of situations alot - I think you have to a bit or you'll go mad with it! Keep going Hazel you are doing an amazing job xxx

[HannahDaykin]

Hi Louise,

I think one of the hardest things are the constant reminders; the things in the home that you can't ignore are helping your Dad because he has this cruel disease.

I admire your strength, that is so apparent through your writing.

Keep your chin up x

[Louise-Alabaster in reply to HannahDaykin]

I can still hear that feeding machine in my sleep!! And mum and dads flat ended up looking like a ward after a while - all the hoists and stuff, I dont miss any of that. Thanks for your reply you stay strong too xx

[judy1962]

Thank you Louise and may God bless you. Your story is helpful to others making these decisions.

[Louise-Alabaster]

There is no right or wrong answer, just be there all the time, thats the best medicine xxx

[Idris]

Thanks so much for posting this. My Mum hasn't got to the stage of not being able to eat yet, but I can't see it being that far off. My feelings about a PEG are similar to yours - she loves her food, it's one of the few pleasures in life Mum still has. We've already discussed PEG feeding, and agreed that when the time comes, she isn't going to have it. Your post has confirmed that it's the right decision - thanks again.

[Louise-Alabaster in reply to Idris]

Hi Idris - looking back now eating was dads only joy left - once that had gone he gave up I think. Connecting him up to that machine every day was horrible - the horrible noise, he lost loads of weight (he went from about 13 stone to about 9) and it just prolonged the inevitable. I know it may be a controversial thing to say but everybody deserves a quality of life and he had none in the end. Give your mum a big hug from me and I am glad if anything I say helps anyone else. Its only ever our experiences we can share!! x

[Idris in reply to Louise-Alabaster]

Those are my feelings exactly - that without any quality of life, why prolong the inevitable? I don't want to keep my Mum alive against her will just so I can 'have her around' if she doesn't want to be around. It's so hard. Thanks for your comment.

[Kathy]

Dear Louise,

Thanks for posting this in such an open, honest way. It really helps to know what other people's experiences are.

Love Kathy x

[Louise-Alabaster in reply to Kathy]

Hi Kathy

Like I said we can only all share what we went through and what effect it had - there are no right or wrong answers sadly. Sometimes I worry that if I am honest I'll scare people because they will know whats coming. But if it helps people I am glad thanks Kathy xx

[Hidden]

Hi Louise & everybody,

I have found this very helpful indeed. My mother is still eating cut up solids and is in blissful ignorance of how bad things are likely to get.............at just turned 87, although I love her dearly, I am hoping that she will go from kinder natural causes before the worst hits her. However, if we have to make this decision, I am sure (from a lifetime of conversations about such things, including her own decisions about my father, following his final stroke) that she would prefer to go quickly than slowly, hooked up to tubes etc. The worst of unbearable decisions..........my heart goes out to you all - keep strong. I am so sorry that people have to suffer in this way - it's so very cruel. Bron

[CyndyLouBlue]

PEG feeding is a big decision and in my MIL's case it was HER decision. Dad was still alive then and I think she thought she was keeping an eye on him if she was still alive. As with so many folks food was one of her chief pleasures and the PEG feeding was just something she accepted as the price to stay alive. She adjusted to it quite well except for the wind. She used to get dreadful stomach pains on a daily basis and we tried everything to help including Peppermint Tea down the tube. And then a new and very young dietitian suggested putting a daily Yakult down the tube. She never suffered from wind from that day forward.