Feeding techniques and moving to PEG. - PSP Association

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Feeding techniques and moving to PEG.

somanit profile image
20 Replies

Hi Everyone,

My mum has PSP for approx 7 years now. no speech and a lot of rigidity. She is getting to the stage where solid food is no longer an option. Trying liquified food, pureed food such as oats, banana shakes etc. adding a little Ensure to supplement the food. Are there any known techniques on how to feed such foods?. Presently we tried by spooning the food close to the cheeks inside the mouth. This seems to work. she can swallow without much gagging and coughing. Takes a bit of time. Doctors are recommending she moves to have a PEG inserted. I'm a bit concerned about the anesthesia that will be required and how she will come out afterwords. Any experiences shared would appreciated.

thanks and regards

Som.

20 Replies
Javan profile image
Javan

My wife had the peg fitted under a sedative. This takes away the fear and danger of anesthesia. She has put on weight and has had no utis in the twenty months since the procedure. All her medications are by the peg so you need to get the meds sorted for the procedure. As I have said before this would have been better done earlier as a precautionary operation in a healthier patient.

easterncedar profile image
easterncedar in reply to Javan

Twenty months is a long period of experience with this. Have you had any difficulties, Javan?

Javan profile image
Javan in reply to easterncedar

No difficulties since peg was fitted, only a better life for my wife as in we have only saw medics two or three times since fitting. We go out most days and people stare when I pump syringes of water and fortisip into her, but sod them as we enjoy life as best as we can.

somanit profile image
somanit in reply to Javan

thanks javan

easterncedar profile image
easterncedar

I think PEG gets installed under local anesthetic. It needn't be a problem. Whether to do it in the first place may be a hard decision, but many people here have had positive things to say about it. No longer spending hours a day trying to get enough nutrition in seems a clear quality of life benefit. Best wishes, ec

somanit profile image
somanit in reply to easterncedar

thanks ev

enjoysalud profile image
enjoysalud

How old is she? What does she want? My son, 55 years old, could not swallow without it going down his lungs. He was in the hospital with aspiration pneumonia and sepsis. He was talked into a PEG (Los Angeles). The surgery was not a problem, but after, It caused him physical pain in his stomach, and he died within 5 weeks. If did bring him hope.

Each situation is individual.

I know of others, not with PSP, who have worn a PEG for more than a year and doing fine.

I would make the decision based on what your mum wants, not what you want.

If she wants you do decide than pray on it, talk to the doctors, and explore with your mum what her "expectations" are of life after the PEG.

Not an easy decision, but than...................

somanit profile image
somanit in reply to enjoysalud

Sorry to hear about your son.

i realise everyone is different and there are no guarantees. we are worried about aspiration hence considering PEG.

mum is 75. difficult to work out what she wants as communication is limited. even getting a yes or no is not easy. assuming that some cognition is there.

thanks.

VronB profile image
VronB in reply to enjoysalud

John has categorically stated he doesn't want a peg as he feels it would give him longer to live the hell if PSP. In the same way he won't have pured foods or thickened drinks. His way of being in control! Xx

sammy90210 profile image
sammy90210

This depends on the patient - can she talk, watch TV, read the news, play with her grandkids/pets, visit friends and family, communicate, walk to the mall and generally have a decent quality of life? in that case it could be a good option

If she is already in a stage where she is near to being bed-bound or in a wheelchair and cannot do the usual things which create a quality of life, it could be a prolongation of her suffering

This is not a simple decision, it can be heartbreaking in so many ways for the patient and family if it turns out that the patient is being kept alive inspite of being in pain and distress - you cannot stop the PEG feeding if you realize the patient is getting worse - the PEG at an early stage can improve skin quality, weight of the patient etc but it cannot reverse the damage in the brain that PSP patients have acquired through the disease (let me qualify that my dad had a PEG in the late stage of his life and we, as a family, considered it a really bad decision, it varies)

I am sorry for your difficult stage - I would suggest you read through all these posts here and make an informed decision healthunlocked.com/search/p...

Also I noticed there are 2 kinds of doctors, one which thinks that life should be prolonged no matter what, only death by kidney failure or unrecoverable pneumonia is an option - there are others who think a patient should suffer pain, distress and indignity as little as possible

Please read as many links here too: google.com/search?q=peg+tub...

Please read, consult and see what you think is best based on what you think your mother would have wanted and what your family thinks... PEG tube patients have to be fed every 4-6 hours and they need to stay upright for about 30-45 mins after every feed and depending on the stage, you need to have enough carers to ensure this happens every day

Lastly, I put this question in a forum and got the following response:

(I'm not a doctor but I am a speech therapist who currently works with swallowing disorders in people with neurological conditions)

The best guidance I know of on this is the Royal College of Physicians (UK) report on Oral feeding Difficulties and Dilemmas: rcplondon.ac.uk/projects/ou...

I don't think it's a humane or not humane thing to do. I think that for some people it's the best thing ever and for some people the benefits are outweighed by the burdens.

In the UK we are moving away from the assumption that everyone will have a PEG tube. In fact, in the light of this report, I would say that the majority of people with dementia won't have a PEG tube.

However, there are people where their swallowing is impaired out of proportion to their overall condition. They might have a reasonable quality of life except for their very poor swallow, and they might be able to walk, do a lot of things independently but just not be able to manage to eat enough to maintain weight. Or maybe mealtimes have turned into an exhausting, stressful situation for everyone concerned, but the person still shows signs of enjoying other parts of their life. In those cases, a PEG is probably humane.

However, if the swallow is impaired in the context of advanced dementia and especially if the person is showing signs of significant distress, then I don't think it's humane. We are increasingly seeing this as a way of prolonging dying rather than prolonging life. And in fact the evidence suggests it isn't very good at prolonging life or preventing aspiration anyway.

If you want an American perspective, our NHS Trust have also adopted these guidelines from the American Geriatrics Society: ncbi.nlm.nih.gov/pmc/articl...

Good luck. It's a very difficult decision.

somanit profile image
somanit in reply to sammy90210

thank you for the advice sammy.

in reply to sammy90210

Sammy you have given the most extensive and explanatory pros and cons of peg feeding that i have ever seen and I am so very grateful to you thank you! I am going to print it out so that we can really sort out where we are. Gosh you really will help us with this dreadful decision xx

sammy90210 profile image
sammy90210 in reply to

You are most welcome Martina, please feel free to ask any follow-up questions whenever you want

Gracie_Girl profile image
Gracie_Girl in reply to sammy90210

Thank you for all your information. My sister opted early on she wanted a peg. I don't know if right or wrong, but will follow her wishes. I just don't know when is the best time. Now, she has some distress with breakfast, chokes and gags really hard. I'm starting to wonder if it's time to mention to her. Dinner time is not much of a problem yet. I guess I'll let her make the decision.

sammy90210 profile image
sammy90210 in reply to Gracie_Girl

Best wishes for your sister and yourself - you can check with the doctors and nurses and change her diet for breakfast, pureed food may be easier for her to swallow - also I found this online (never had a chance to use for my dad): swallowstudy.com/product/sa...

Gracie_Girl profile image
Gracie_Girl in reply to sammy90210

Thank you for your information. I checked out the straws and and ordered. It looks like it's just what she needs right now. Thank you again!

sammy90210 profile image
sammy90210 in reply to Gracie_Girl

you are most welcome - please feel free to ask for anything again - best wishes for your sister and your family

Althea-c profile image
Althea-c in reply to sammy90210

Thank you for all this information.

Althea

Duffers profile image
Duffers

Hi som. I can only relate our experience. My hubby had peg op under mild local anaesthetic in feb this year. I made them keep him in hosp until i was sure it was ok and also that all feed and equipment was in house before we came home. Also that i was properly trained and comfortable with administering it. Piece of cake now until pump stops or tube gets clogged but thats down the line when you know who to pester to get it sorted quickly.

Ger hasn't lost any more weight and although he still coughs and chokes its on a much lesser scale. Make sure the surgery understand about liquid meds now, or water soluble ones. Water before and after to flush tube. I also do the balloon water change as ger had to have the external insertion because his mouth is nearly closed now. Others go down inside. Depends on individual cases.

I put gers feed on for 11 hours at night. It works for us and saves faffing about during the day except for hydration.

Do ask again about anything. Good luck with your decision.

Marie

somanit profile image
somanit in reply to Duffers

Thanks Marie

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