Peg Feeding

[Redjune1]

I spoke to the dietitian yesterday and she mentioned having a peg fitted for my husband. We knew that this would probably happen eventually but don’t know a great deal about it. I was told that he would have to be in hospital for 72 hours while it was fitted. To be honest that worries me more than the actual peg itself, how he will cope in that situation. Obviously I will be with him a lot of the time, but will they know how to deal with him?

[Zerachiel]

Hi, I wrote this on another thread..."If you have a search on this forum you will find many discussions on feeding tubes, my wife has one and doesn't regret it.

To keep it short, if you believe quality of life is still there and hopefully you have a few years left to enjoy it (PSP is unpredictable!) then yes go for it

On saying that it is worth reading this story for reasons not to do it

dailymail.co.uk/femail/arti...

On a side note a RIG feeding tube is less invasive to fit than a PEG and although needs changing more regularly it can be done at home.

Feel free to message me if I can be of any help"

As far as the hospital stay is concerned I have always insisted to stay with my wife as communication is very difficult, in the numerous hospital stays they have always provided a room for us.

As her neurologist had referred her for a feeding tube she was on the Neurological ward when she had it fitted who have a better understanding of her needs even if they don't know PSP.

I have just added a new post with document to take hospital.

[DreamWeaver1]

Hi Redjune1

As far as his being in the hospital, when my wife had to be in the hospital, her communication was somewhat challenged, but I could easily know what she meant, so I was able to stay with her, in her room, as a support person, so that the hospital staff could use me to read her answers to their needs. This was also during Covid and the hospital wasn't allowing visitors, but I was there 22 or 23 hrs each day. I was sleeping in the room and would usually go home for dinner and cat checking.

In regard to the peg tube, I posted this as a reply to someone considering getting a tube.

"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.

I hope this helps!"

[sammy90210 in reply to DreamWeaver1]

Every message here is invaluable

My dad had a PEG tube installed based on his doctor's advice

His quality of life was quite poor already, he couldn't watch TV or read the newspaper or use the internet - he had a hard time communicating and had very poor cognition of what was around him and how we was feeling - he'd say that he was not covered with a blanket when he was

After the PEG was installed, it was me, a 30 something guy, my mom and 1 helper who worked around the clock to keep him comfortable and in 8 months it pretty much broke both of us - keeping him comfortable, having just the right mix in the tube (you can't match nature) and ensuring his mouth didn't develop ulcers due to the dryness or taking care of his eyes and nose, changing, cleaning up, all those things had to be done and even if it had been 3 of me, it wouldn't have been enough

You raised a perfectly valid concern, whether you'll be able t manage it or not, if you're the wife and in your 60s or older, I can assure you that you'll never be able t manage, and if you can, it will be only for few months because patients can change stages without any notice

Please read the other replies here and other replies to the question in this forum but at the end of day, please see if prolonging their life is a virtue or whether one is only prolonging their suffering

I'm sorry if this was harsh but I thought I'd share my own perspective, other people would have different ones

[Redjune1 in reply to sammy90210]

Thank you for your reply. I’m coming to the conclusion that having a peg fitted is just delaying the inevitable and I don’t want my husband to suffer at the end because it is the only thing keeping him alive.

[Wybert]

Hello, My husband goes into hospital today for a PEG fitting. I will be with him to assist in communication . He does not drink very much and has to be encouraged .

Thank you Dream weaver1 for your information. I too will go home for cat care and a break.

[DreamWeaver1 in reply to Wybert]

Hi Wybert,

I have found that having the tube allows for Karen to enjoy tastes of things, without the need that she swallow food for nutrition, so I don't fret about her not eating. Her quality of life is much better than if she were choking on food or constantly hungry. She can have water or coffee, tea (not hot!) through the tube and any medications can be given this way as well. She isn't very verbal, still, she will try to speak, she does have a communication tablet and also uses hand signals. I let her know what I'm planning for meals, and she will let me know what she'd like to taste. Mobility wise, we have been working at PT to help her get some walking back, currently she can't get up or transfer by herself, she can stand well, but needs balance assistance. Her arms and legs are very strong. Cognitively, she is just as sharp as ever, good recall, reactions and decision making. She enjoys coming with me to the market and we have been able to go to the occasional movie theater.

Conveniently, I work from home and Covid opened the world to using Zoom calls, so I have been able to curtail most business travel, and when we do travel, being able to use the pump backpack or just pull into a rest stop to give her a quick feeding has been a way of trying to keep some normal to her life.

I hope all goes well. There are excellent videos on line that are helpful for caring for the stoma (tube site), and resources to keep you confident in your journey.

[Scottoppy]

The simple answer is do not have a PEG feeding tube fitted, all you will be doing is prolonging a very poor quality of life. My wife signed an advanced directive when this was explained to her. I know it will be hard to watch this awful condition squeeze the life out of my dear wife but rather that than let her linger in purgatory any longer than necessary. I hope your love will help you see the way forward. Love and Hugs from another carer. xxx

[Redjune1 in reply to Scottoppy]

Thank you Scottoppy. I’m inclined to agree with you now having thought about it and spoken to my two step children. We don’t want him to be kept alive indefinitely by the peg. We just want him to slip away peacefully if possible

[LuisRodicioRodicio]

Hi Redjune1!

PSP is a rare disease, little known by GPs, hospitals and health professionals.

"Zerachiel" in the PSPA chat has proposed creating very concentrated information about a specific PSP patient (each one has its peculiarities) to inform caregivers and healthcare providers about the circumstances, treatments, limitations, useful data and good practices recommended in that case. specific.

A model is accessible at this link:

healthunlocked.com/psp/post...

Hug and luck.

Luis

[Redjune1 in reply to LuisRodicioRodicio]

Thank you Luis that’s really helpful.

[Richard33]

Redjune,

Ruth (64) had a PEG fitted quite early in the progress of the disease - she was still able to eat (and is still 18 months later) soft regular food, but she was struggling to drink. The fitting took just a 6 hour stay in hospital during the day and our daughter was able to stay with her for the whole time except the 20 minutes in surgery- as Ruth was struggling with transfers and could not talk to the nurses.

In the 18 months since fitting, Ruth has stayed pretty stable - helped hugely by the fact we can give her water 4 x a day (and laxative if needed). So no more dehydration and constipation.

I am afraid everyone's circumstances are different. But our experience has been very positive.

Richard 🙂

[Redjune1 in reply to Richard33]

Thank you for your reply, it sounds like it’s working well for your wife.