The peg: Hi my brother Richard has suffered... - PSP Association

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The peg

horserace34 profile image
32 Replies

Hi my brother Richard has suffered with PSP now for over 4 years. He was due to have a peg fitted back in November but when it came close he didn't want it. Wants to be asleep for the procedure but they only sedate you. Now he is having problems eating blended food. Does the peg really help?

32 Replies
Teeker profile image
Teeker

Hi horse race34, sorry about your brother having problems eating. What is Peg?

horserace34 profile image
horserace34

Hi Teeker

peg is the tube in the stomach to enable feeding when swallowing becomes difficult.

easterncedar profile image
easterncedar

There are many difficult issues involved with the choice of whether or not to have a peg installed. The actual procedure is easy, and your brother shouldn't worry about discomfort with that. In fact, general anesthesia is to be avoided with psp if possible, as there can be increased risk of damage to the brain.

A peg won't guarantee that the patient won't choke or aspirate food, but it greatly lessens the risk. It will provide fluid and nutrition. Some people develop swallowing problems early and go for years with the peg very successfully providing a good quality of life. The major problems arise when there is no quality of life and the peg is merely prolonging suffering, but cannot be removed without a battle with the medical staff.

There are many posts in the archives here. Please look through them if you would like to learn more about the various experiences people have had.

Wishing you and your brother the best, Easterncedar

horserace34 profile image
horserace34 in reply to easterncedar

Thank you for your input

abirke profile image
abirke in reply to easterncedar

EC, thanks for your correction...I could not find your specific post , but I said two weeks no food . It should have been three or more weeks in a healthy person.

abirke profile image
abirke in reply to easterncedar

Thanks for your correction ec. Your'e right, the body can sustain more than 2weeks without food . I read 3 weeks or more in a healthy body.

AVB

easterncedar profile image
easterncedar in reply to abirke

I deleted it myself shortly after writing it because three weeks plus is for a healthy person, and your two weeks is probably more accurate for someone who is already thin and ill. sorry, Mrs. B!

abirke profile image
abirke in reply to easterncedar

Well I don't know if it was subconscious or if it was truly an error. but again I am sorry for writing 2 or three times! I really wasn't trying to be that emphatic.....ahhh....oops! Just now it kept entering a new line It took me a couple minutes to get back to this line I'll show you what I mean....

.... it kept going way down here!

I am off this post....all other posts are fine, weird eh?

abirke profile image
abirke in reply to abirke

SEE it didn't show what was going on in my post...it self-corrected!

im out

easterncedar profile image
easterncedar in reply to abirke

Technology is awful except when it's amazing. Mostly amazing, as it has provided me so many friends here. We are on the same page, Mrs. B, never mind!

abirke profile image
abirke in reply to easterncedar

I can't send you a response,,,is it working

abirke profile image
abirke in reply to easterncedar

oops I just found my responses! usually I cant' write after I send response but this one just faded in a gray color and it did not say "response sent".....oh well yet another error from me... color me red....

AVB

Julieandrog profile image
Julieandrog

hi

rog when he had speech put it in his final wishes with hospice not to have peg ftted, I support him in that. many people have good experiences but not for us.

love Julie x

NannaB profile image
NannaB

For my husband it was good. He was not getting enough nutrition to keep his body healthy so was suffering from sores that would not heal. Within two weeks of having the PEG his sores had disappeared, his skin was no longer dry and I as able to take him out without worrying about what he could eat. There was no problem with fitting it and he was back with me at the hospital within 30 minutes. 10 months after the fitting he decided he no longer wanted to be fed and he died 11 days later, quietly and not in distress. I opposed the PEG to start with but it was the best thing for those last few months

X

easterncedar profile image
easterncedar in reply to NannaB

I was hoping you would weigh in, Bev. Your experience has greatly undermined my own certainty on the subject! It has given me an open mind, which I will need, as my sweetheart was never willing to discuss it when he could, and it will be up to me to decide. Warm hugs, ec

NannaB profile image
NannaB in reply to easterncedar

Hi, it's a very difficult one isn't it. If when C had his sores he was also failing in other ways, I would have said no but as he was still "with it" and still wanted to eat, even though he couldn't do anything for himself, I felt is was for the best after all. He was also able to indicate with thumbs up which was a blessing to me.

If he had been asleep most of the time and unresponsive, not wanting to eat, things may have been very different. I think it has to be weighed up at the time. If it will improve his quality of life even a bit, I'd say yes. If it was just prolonging the inevitable with no quality, I'd say no.

It's a horrible decision for you to have to make in the future but whatever you decide, you'll be doing what you think is the best for him at the time so it won't be a wrong decision.

A big hug for you too.

XxxX

vlh4444 profile image
vlh4444 in reply to NannaB

My thoughts exactly ❤️

Kylie4951 profile image
Kylie4951 in reply to NannaB

I agree. Bill chose the feeding tube himself hoping to live longer. Alas he left for heaven in 6 months. I do think he hated his life but wanted to be around as long as he could.

horserace34 profile image
horserace34 in reply to NannaB

Thank you for your reply. I am opposed to him having it done but am getting lots of feedback which is good.

D0ttieL0ttie profile image
D0ttieL0ttie in reply to NannaB

Hi NannaB. How are you?

I have read this post with interest. Geoff has always said he will not want tube feeds, he chokes a lot and is on thickening granuals for his drinks now. I too will keep an open mind when that time arrives.

Take Care

NannaB profile image
NannaB in reply to D0ttieL0ttie

Hi DottieLottie, I'm doing OK thanks. Miss my man loads of course but not home alone very much so am finding out what real retirement is for the first time.

If Geoff can still communicate in any way, it will have to be his decision anyway. My hubby communicated via thumbs up and down but sometimes he had a job to move his thumb. I had to sign the consent form at the hospital but the doctor said C must indicate he wants it done. I prayed his thumbs would work one way or the other. After a struggle his thumbs went up and I breathed a sigh of relief. Then the doctor said, " Oh, I forgot, I need an independent witness, I'll go and fetch a nurse". Fortunately the second time round his thumb went straight up.

Another reason I was pleased he wanted it, even though as I've said before, I was against it originally, the thickened drinks C had and liquidised food caused severe constipation. Which caused him distress. The PEG stopped that. For a while it was the opposite but the HENS (Home Enteral Nutrition Service) who trained me and his carers to use the PEG, kept a close eye on him, changed the feed and things improved.

Looking back now, I wonder how I managed for those six years and think a lot about everyone here, those living with the illness and their carers. It's amazing what we can cope with when we have to isn't it.

Take care.

XxxX

D0ttieL0ttie profile image
D0ttieL0ttie in reply to NannaB

Glad that you are coping Bev.

It is the start of a new journey for you and I do hope that it brings adventure, good health and happiness too.

Thank you for the above.

Geoff has signed a DNR and did discuss not wanting to be tube fed with the GP at initial diagnosis. He still has capacity but can also be prone to just repeat what I say, so when that time comes hopefully he will be able to make a decision.

However, armed with your knowledge that will help me to guide him. He is on thickener for just a week now.

We have been having serious issues since August with severe constipation (he gets impacted top end of bowel) and inability to urinate (because his bladder goes into spasm), so I will discuss with the SWAT nurse when she visits on the 9th.

Like you, neither Geoff nor I have had any retirement without Geoff being ill. However we did have an action packed 2 years upon initial diagnosis, albeit with me feeling more like a mother than a wife but we made great memories.

Holidays no longer possible but we are getting a lot more support having just been granted CHC so there is always a positive.

Take care and good luck xx

Pam

cabbagecottage profile image
cabbagecottage in reply to NannaB

hello Bev johns carers or sitter is not allowed to give him any medication Or feed him ..

How did you manage when leaving Colin and his medication was due .

Parkinsons meds are supposed to be given on times .

abirke profile image
abirke

Yes PEG keeps patient alive.

Has he changed his mind? It sounds like first he did not want it and now he does? If he chooses not to have it and he can no longer take food by mouth, then hospice is his next step. they allow him to die naturally but with much less stress on his body and much less stress emotionally for the family and him. If I am correct, It takes about 2 weeks without any food and about 1 week without any water for the body to finally succumb naturally.

I hope this helps,

AVB

doglington profile image
doglington

My husband is moving closer to this stage. I agree with nannaB. If possible it should be patients decision. The quality of life is the critical thing and I realise that one's assessment of that can change when its you !!

love, Jean x

sammy90210 profile image
sammy90210

Hi - it depends on the patient's situation - if the patient has a reasonable quality of life, can talk, walk, go out, read, do some other small things, then it can be an option - but if the patient is almost bed bound and cannot do any of these things, it might be a prolongation of suffering - here is a post from a health professional - he replied to me last year, when I asked about the PEG after it got put in for my own dad (as a family we realized after it was put in that it was a bad idea, in our particular case)

------------------ post from speech therapist continues below --------------------

(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.

easterncedar profile image
easterncedar in reply to sammy90210

Thanks, Sammy.i found the latter article very interesting, and will look at the first one later. It's about 3 am here and I should try to sleep. Very good of you to keep an eye on us and continue to help. I'm always glad to see your name come up. How are you doing? Love, ec

sammy90210 profile image
sammy90210 in reply to easterncedar

You are most welcome easterCedar :) It's a bit difficult sometimes since it brings back memories, but it's in the past and I should do what I can to help others still going through this ordeal

I am doing better :) thank you - spend most of my time outside work revising my IT skills and take my mom out for shopping on the weekends

I hope you and your hubby and doing well too - an uncle of mine just got diagnosed with something like PSP - himself, his wife and all his children are doctors and even they were in denial till now and now feel overwhelmed with the diagnosis :( My mom and I assist them in whatever way we can

easterncedar profile image
easterncedar in reply to sammy90210

Oh, Sammy. I'm very sorry about your uncle. It must be especially painful for you and your immediate family to be reliving the experience with him and his. I am sure your knowledge will help and comfort them. Oh, this life!

Amilazy profile image
Amilazy

The PEG allows nutrition and adequate fluids to maintain a healthy body. Margaret had one for nearly 2 years, it gave us about an extra year of active life it enabled her to see and hug her grandchildren. The only issue I had was that when PSP had robbed her of quality of life it kept her alive, but she did not want it removed as she wanted to live. She eventually died after a bad chest infection.

M let me know that the PEG stopped her choking and slow starvation, made her life better, it removed anxiety and allowed her some extra months of life. From my point of view it enabled me to maintain caring contact even when in a nursing home letting me feed her through the PEG on a daily basis, she was bolus (manually) fed not pump fed, so I had close and almost intermate contact daily which she enjoyed and I loved. It allowed me to give her her last fluids before the palliative regime started. The PEG gave her time to appreciate life and pick her time to depart in peace and painlessly.

There were a couple of minor issues she loved to pull the tube but learned not to remove it after a couple of times and I learned how to clear blockages caused by not flushing properly or not fully dissolved meds.

You must remember and appreciate that it is the patient who must decide. There are many benefits but also some problems. My point of view is that without it M would have died in agony from choking on puréed food or liquids in a slow death. The PEG gave the opportunity for normal life and a peaceful death.

Best wishes and I hope the above helps, Tim

doglington profile image
doglington in reply to Amilazy

Thank you, Tim for that detailed description of actually living with it. I think Chris will maintain his position of not having it . He so enjoys food but there is little else for him now. It is such a dreadful situation.

I think of you and hope you are catching up on your sleep and managing to relax.

love, Jean x

cabbagecottage profile image
cabbagecottage

I have spoken about the peg for a very long time to the Parkinsons nurse district nurse pailliatve care nurse dietician etc ..

th y have dragged their feet and I feel it's partly because they think it's prolonging the inevitable but John has been in this stage for a few years .

Been unsung thickener for every drink and purred . Nutilis drinks now baby food .

he has Parkinsons and his days fluctuate .eyes closed mostly bed or chairbound and hoisted . Not been outside for three years .

Although a very uncomfortable time his bottom is sore , he has never once said to me I have had enough ,

We have CHC have carers double handed X three daily but we don't get any night sits . I do get two three hours a week . .

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