PEG tube question

[Cricket378]

My mother has had a PEG tube since November 2021. Before having the PEG tube, she was hospitalised for a UTI. She is completely immobile, can't speak, can't move her limbs. I was wondering if anyone has had an experience like this and if so, how long did your loved one live after having the PEG tube inserted? I hate seeing my mother not able to do anything but just lay there and don't know how much more suffering she will have to go through.

[JJs2019]

I was so sorry to read about your mother’s situation. Between a rock and a hard place.My husbands GP referred him for a peg feed and several weeks later, after he was admitted to hospital in a state of dehydration, I was told that a Neurologist, not my husband’s, had decided that it wasn’t worth doing. No one bothered to inform the GP or family. My complaint against York Hospital was taken up by the Ombudsman who decided that the Trust had apologised so end of matter.

I think there should be far more open debate about peg feeds particularly with family members and of course much better communication. You need someone to actually talk to you.

[am2015]

I'm sorry to hear what you are going through we went through the same with Mum. Shortly after Mum had her peg fitted she would be unconscious for most of the day, only waking up for maybe an hour a day. She passed away 8 months after it was fitted. Everyone is different, there are people that can live years and some pass away quickly, it depends on how quickly PSP is progressing. It is horrible seeing your Mum in this way, stay strong.

[NannaB]

It is so hard watching a loved one like this isn’t it. My husband had a PEG fitted when he could no longer swallow & for 18 months it gave him a new lease of life. The only way he could communicate was by moving one thumb up & down a few centimetres but he understood everything anyone said to him. If you look up my past posts, I have written in detail what happened after 18 months. In short, he decided he didn’t want to be fed any longer, indicated to the GP via his thumb answering questions that he had had enough and died very peacefully just under 2 weeks later not on any medication ( again thumb movements) no chest infection, just peaceful sleep. Everyone is different. The PEG was the best thing for him at the time as he didn’t choke any more, cleared up a pressure sore by giving proper nutrition and allowed us to visit many places he wanted to go to. If he hadn’t decided to end it, I think he would have lived a lot longer but it was a huge relief but with deep sadness that my wonderful husband of 44 years was finally at peace. Please keep talking to your mum and see if there is any way she can communicate, even the smallest movement can indicate yes or no & let you know how she is feeling & allow her to connect with you in some small way. Best wishes

Nanna B

[Alib2408]

Hi, I am so sorry to hear about your mum, we have a very similar situation with my dad. He was given a PEG 18 months ago due to swallowing issues before he received his PSP diagnosis. With hindsight if we had known what was ahead we may not have agreed to this but now that it is in place it is very difficult. My dad is now bed bound, unable to communicate with no quality of life and we do worry how long he may have to suffer this as the PEG is keeping him so well nourished that he remains relatively strong. I know that a lot of people with a PSP diagnosis do not wish to have aPEG fitted but my Dad was unfortunately not given that choice.

[DoingwhatIcan]

Hi .. it seems to be like everything else with this disease - how long is a piece of string. My dad had his PEG fitted nearly 4 years ago. He went through countless UTIs and chest infections and was almost permanently on antibiotics until we realised that they were doing nothing except giving him side effects. He's still with us, his brain is still sharp and he's determined to keep living, but to be honest, I'm not sure what for. He can't move, except his hands and communication is so so hard. Sorry I can't give you the answer you're looking for x

[Richard33]

Hi,We are about to have a PEG inserted for Ruth. We have a medical Power of Attorney in place. The hospice doctor said that if Ruth was unable to communicate and did not appear to have any quality of life, we could decide to withdraw nutrition from being administered by the PEG - so that it was only used for hydration and pallative drugs. Death would then follow within a short period of time and her life would not be prolonged unkindly.

The ethical issue is that you are not allowed to administer anything to bring about death but you can choose to withdraw treatment - in this instance nutrition via the PEG.

Not sure this helps in your circumstance....Poor you - horrible to watch your mother in this state.

Richard

[lesauerbach]

My wife had her peg tube about 2 years. However, she was not 100% immobile.

[oilman1]

My response is always balance quantity of life with quality of life.

[Kasenda]

It’s difficult to make that route for someone else. My husband agreed to PEG and he is now 10 years into his PSP. But I have no regrets allowing him his wishes.

[kpmdas]

My wife has PEG tube inserted for feeding. Doctors say that this can be used as long as there is no block or infection at the entry point. One tube can be used for 6-12 months or more. Of course, feeding with PEG can be done as long as possible, provided the patient is healthy and gets enough nutrition without complications. my Google search says it can be anything from one year or more.