peg feeding tubes.

[Purp23]

hello, I am looking for a bit of advice. My husband has Psp diagnosed about 5 years ago, he is really starting to struggle now. We were up at the hospital today to speak to the Gastro nurse about getting a feeding tube. Feeling a bit overwhelmed by it all, so much to take in. I am just looking to see how others dealt with it. He has had a big weight loss recently, I am basically having to spoon feed him as he really struggles with it and also getting his mouth open enough to eat. The food is getting more and more mushy/moist. The nurse spelt it all out and the risks etc. Not committed to it but they would be looking to fit it within the next month. What are others experience of it?

[Zerachiel]

Hi, 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.

[Purp23 in reply to Zerachiel]

Thank you so much for your response. I have had a search of this site and also read the article in the daily Mail via the link. We will have a chat about it in the morning, and see what he wants to do, via hand signals! Just want to do what is best for him. Thank you. Px

[Zerachiel in reply to Purp23]

I read that article in hospital on the night my wife had her tube fitted and thought what have we done! But although it's been a tough year and PSP has thrown a spanner in the works, neither of us regret it. Make your decisions and don't look back, nobody can predict what us going to happen. Best wishes.

[Richard33 in reply to Purp23]

I agree with Zerachiel - my wife had one fitted 12 months ago and it has not really been any problem. We only use it for liquid to keep her hydrated and not constipated. But I think you need to hope that you have some time left to make it worthwhile. I would not suggest it if you are getting to the end stages.

Hope you find the right solution.

Richard🙂

[Kasenda]

Be honest to your husband regarding the pros and cons and let him decide. My husband lived for 11 years with PSP being PEG fed for the last 4 years. With hindsight, I would let him decide again. Thinking of you. 🙏

[Purp23 in reply to Kasenda]

Thank you. Px

[Kelmisty]

My mum has already made the decision that she does not want to live longer than nature intended as she says her illness is not worth living through longer than necessary.

She’s starting to experience choking but she’s still firm on it. And I have to respect her wishes, sit by and do my best for her. There’s no easy or right decision on this only the one they want.

[Hopeanywhere]

We did one and it definitely allowed a less rapid decline and took a lot of stress off of trying to maintain calories etc. Depends on where they are with what else they can enjoy in life. I wrote a detailed reply on a different thread. My mom is gone now, but it helped a lot in the last year and a half.

See a more detailed reply I wrote here:

healthunlocked.com/psp/post...

[LuisRodicioRodicio]

Hi Purp23!

These are our informations about PEG:

We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.

Hi Caya wrote:

“If the PEG tube is appropriate it depends on the patient:

If the patient has a good quality of life, which means they can walk, watch TV, go to the mall, read the news, to friends etc and suddenly lose the ability to eat and drink then could be OK..

But if the PSP is already advanced and they are fast failing, then it's not recommended since it's just prolonging their misery”.

Please to search for "peg tube" on PSPA fórum or others for other people's opinions.

One caregiver wrote: “My dad had one and i would never recommend it for a late stage patient (it wouldn't make their PSP better or improve their cognition etc).”

On 2021-07, Dr. James Rowe points out: A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition.

Hug and luck.

Luis

[LARWLSN]

Mom had a tube put in in April this year -- it was an emergency situation, she had reached the stage where, without one, she was going to not be alive for very much longer. The tube bought her more time, that is for sure. It is, unfortunately, impossible for us to know if she was ok with this decision, as she has no ability to communicate. Since the tube, her skin is better, her weight hasn't dropped and she as mostly stopped having UTIs. All improvements. Good luck.

[sherlock19]

my husband had one fitted earlier in the year and whilst he can still eat, the tube has been worthwhile for administering medication and fluids. He finds it very difficult to drink so just being able to give 500ml of water through the tube to keep him hydrated has been a godsend. I assume the dietician has already prescribed the lovely milkshake drinks. They are great for a quick hit or calories. Good luck.

[DB201]

I’m sorry to hear you are dealing with this cruel disease. My husband died of PSP on March 10th of this year. We had talked about whether he would opt for a feeding tube early in his diagnosis (2019) and had also spoken with a few folks who had knowledge of how these tubes actually feel/work. We determined not to use a feeding tube (and I have since put this in my own living will) because it doesn’t sate hunger and seemed to us to be a pretty gruesome way to extend life beyond its natural limit. Oddly, my husband actually died before swallowing became too difficult. It’s such a terrible way to leave this world, and no matter what you decide, my heart breaks for you.

[SilP]

I'm so sorry you are having to take with these horrible decisions. My mum died of CBS last week. We decided not to have a PEG as she lost her ability to swallow quite late in her jounery. She already couldn't talk/walk/ her body was completely immobile really. We had already moved to pured foods about 6 months before she started losing her ability to swallow. In our case really the PEG wouldn't have helped much. It was still a very very difficult decision to take though. We were lucky to have a very supportive palliative care team who helped thorugh that decision.

[verma32]

Hi my father is 84 years old and was diagnosed with PSP about 13 years back. Swallowing became a big problem especially liquids. We kept him going for about 4 years using products like thick it for liquids . Finally two years back we put a PEG. I would say in our case it was accepted well by him and everyone around and saved him from aspiration for the last two years. I feel it was a good decision. We thereafter continued to deal with Saliva pooling issue and he had aspiration with saliva a month back and is now also on a tracheostomy tube. Its a fight to keep the person around as this disease progresses. To come back to your question I feel its better to have the PEG then risk aspiration. I would think that a swallowing.evaluation should be done it will show if any aspiration is happening if it is then the choice is between Pneumonia or PEG tube.

[pmcdonough1]

My husband had PSP. He was eating minced and moist foods before he came down with COVID-19 while recovering in the hospital he contracted C-DIFF when he recovered while still in the hospital he slid out of the hospital bed and got a Subdural Hematoma. His ability to swallow was greatly reduced. This resulted in Aspiration Pneumonia, failed swallow test and emergency Peg Tube. While in the hospital peg tube started bleeding from too much physical therapy, finally bleeding stopped after wound packed with clotting netting. Feeding pump continued at home, medication to prevent Ulcers caused gas in stomach. Once medication stopped feeding went smooth. I was able to continue giving husband water and medications as well as the pump feeding. Note, the muscle on the bottom of the esophagus becomes weak. This muscle is important in preventing contents in stomach from backing up in the esophagus. Once on the Peg Tube it is important to keep your loved one at a 30 degree angle during feedings and for one hour after feeding and or medication administration through peg-tube. When using a pump to feed around the clock I would advise you having other's help with monitoring your husband to make sure he stays at a 30 degree angle. Wishing you and your husband my best.