Hi....my step mum has PSP, she is bed bound and has carers come into her home 3 times a day to help my dad who is her full time carer. She is still able to eat and swallow although this is becoming a lot more difficult and time consuming and can no longer feed herself. The speech therapist spoke to my dad and step mum last week about inserting a PEG as she has lost a significant amount of weight in the last 6 months - probably as much as 3 stone. Mainly because she doesn't have the appetite or energy to consume very much.
My dad is very concerned about her having a peg fitted ( just generally), my step mum hasn't particularly reacted for or against it. Does anyone have any general advice about having a PEG, how you as a carer coped with it and of course your family member of friend who actually has it.
Any information would be really helpful about making this decision for them both, they've been told there's probably a month window to do it before she is too frail to withstand the operation.
Any advice gratefully received.
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KingKenny73
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The old bag had a peg for years . We found it to be a blessing ,as it allowed all mediation, fluids and feeds to keep going even when she was ill. It was no problem as long as it is kept clean .
My husband had a Peg-Tube. It allowed for medication and fluids. Getting enough nutrition was challenging. The patient must be at a 30 degree angle during and then for up to 1 hour after feeding. I have learned that when a patient stops swallowing, the muscle at the bottom of the esophagus becomes weak and the chance of stomach contents or stomach acid coming up the esophagus is increased. This is an aspiration risk, thus the required 30 degree angle. My advice for you is to find experienced nurses who can talk to you about how feeding through the Peg-Tube can be done safely and efficiently for your mother, and what type of help might be required.
My husband was adamant he didn't want a PEG, however a dietician persuaded him to have on whilst on a home visit. Chris had capacity at this time, so we discussed it with the family and his oldest friend. The concensus was not to have it. He wasn't bed bound but his quality of life wasn't good. He reversed his decision and the operation was cancelled. He was an inveterate fiddler and I dreaded the consequences had he had it fitted.
Please take a long look at historical posts here on this site before making your decision taking into consideration all aspects, including the quality of life. Not an easy one....
Thank you, I'm passing on all of your comments to my dad, it's been really helpful to look at all aspects of the decision, I am encouraging my dad to speak really candidly with my step mum about it as feel it really needs to be her decision with our support, such a difficult decision.
Hi!! Definitely it is not an easy decision. We are actually in that predicament at the moment. My 86 year old father is bedbound, double incontinent, needs assistance to be fed and with all daily living activities. He's actually hospitalized at the moment due to pneumonia. His doctor is advising against a feeding tube. He said that having a PEG tube wasn't going to make any improvements in his quality of life. So we are opting for no feeding tube.
my late husband had a PEG tube for the final year of his life. At first it was a blessing but then it became a curse when he became bedbound and frequently still choked on his saliva and excess secretions, which I believe were made much worse by the liquid nutrition we were pushing into his stomach. It’s important to be clear what your and your loved ones’ priorities are —Quality of life or simply life at all costs. Being in charge of the only thing keeping him alive was an overwhelming responsibility in the end. This may be too much information for some, every OSP story is different, but I thought I would share my perspective.
Hi, we were in the same position as you seem to be, time was a factor and also the weight loss, so my husband had a peg inserted last week, we are still getting used to it! He is still able to eat but it’s a very soft diet and he does take a bit of time to eat anything. I did put a post up on here and got many replies which were incredibly helpful, they gave advice on both sides, plus and minus points, for and against. My husband decided that he did want one and he had an appointment within a few weeks. I wasn’t sure they would be able to insert it as his swallow was quite poor and as it was an endoscope guided procedure I was half thinking I would get the call to come and get him as they couldn’t do it but they did get it in with no problems. The up side is that I can now get a decent amount of hydration in to him, we are doing one nutirina drink a day at the moment and will go up to 2 a day, his weight is stable as we had a home visit by the NHS dietician. Who will be monitoring him on a monthly basis. They have changed some of his drugs to soluble, not his Parkinson’s ones, so we can put them through the tube so we can cut down on the choking so we will see how he goes. There is quite a routine to the peg, turning it once a day, flushing 3 times a day and once a week I need to move it to avoid scar tissue forming. It is quite daunting at first but it’s actually quite easy to operate, attaching the syringe and flushing also giving the nutricia drinks. Good luck. Px
My wife was diagnosed in late 2018, at that point she also had knee issues and we would walk together or she would use a cane.
She has had a peg tube since October of 2021 and I would wholeheartedly recommend it.
She was in the hospital for a collapsed lung, as fluids had built up in her chest cavity. They had placed chest tubes to drain the fluids.
A G-tube was recommended for a couple of reasons,
I won’t go into everything that went on, but we started with a g-tube, then swapped to a JG-tube before we left the hospital. Once home, I found that I wasn’t using the J side of the tube and was only flushing it daily. We were able to trade back to just a g-tube and that is working just fine.
Something to know, the standard tubes are several inches long and hang out with a valve at the end. A compact tube, or Mic-key “button” is flatter and much easier to deal with while dressing or bathing. We started with the standard, and shifted to the mic-key during a regular trade out. Tubes do get traded out every 3 - 6 months depending on the type. A JG-tube has to be done by a doctor, a G-tube can be done at home, we have not tried that, but have seen it demonstrated on line.
We do have a pump and an IV pole so that if we want to do continuous feeding we can, we also have a backpack for the pump that works well. We used it during an overnight flight so she would stay on schedule.
Generally we do bolus feeding, using a syringe with out a plunger, so just gravity. I give her crushed pills and a fibersource flushing the tube before, between, and after with 40-50cc’s of water. It takes 7-10 minutes to do that. Sometimes less. With the JG-tube, the exterior of the tube is the same, but there are 2 tubes in it, so the flow is slower, so it took much longer, maybe 18-22 minutes.
Over time I’ve been able to regulate her weight by giving her more or less tube feeds to supplement what she is eating by mouth. Her recent drs appointment feed back is that she is doing wonderfully and all her numbers are where they should be.
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