PEG feeding: Hi everyone Richard finally had... - PSP Association

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PEG feeding

horserace34 profile image
8 Replies

Hi everyone

Richard finally had PEG fitted 2 months ago. He seems to be finally putting on weight. Should be, as well, because not only is he having peg feed but also eating what he ate before. At the moment having problems, the tubes seem to be coming apart a lot. Getting used to it but is hard work when trying to move him by yourself.

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horserace34 profile image
horserace34
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8 Replies
Katiebow profile image
Katiebow

That sounds very tricky, Ben has said he doesn't want a PEG but there is always a slim chance he will change his mind. Sounds like you are doing well if he is gaining weight, keep on keeping on, as they say.

Love Kate xx

horserace34 profile image
horserace34 in reply toKatiebow

Thanks Kate, we are getting there. X

Jafarrar profile image
Jafarrar

Pray for you and Richard.

horserace34 profile image
horserace34 in reply toJafarrar

Thank you

Sayer profile image
Sayer

Not sure what you mean by 'coming apart' but if having trouble with your PEG get back to where it was inserted and tell them the problem. Trouble with lifting? Get in touch with your local Social Services they should have an Occupation Therapist who will advise on lifting techniques and provide equipment such as a Return 7500 if needed.

Duffers profile image
Duffers

Hi there. My hubby Gerry had peg fitted February. He's just had the 3 monthly change. Nurse came to house to do it. His gets bloody crystallisation every day so dns are watcing it at my insistence. He comfort eats still but not as much as before. They give him 1500 calories in total via feed at night. He's very awkward to move as stiff and helpless. I'm waiting for care agencies assessment this week I hope as I'm becoming a bit worried and desperate moving him on my own even though I have a return stand with a belt for moving him which I got via ots. It's a continuous worry. Keep strong. All the best. Marie.

Marie_14 profile image
Marie_14

Marie where are the carers to help move him? From the way you have described him he sounds way beyond what you should be trying to manage alone. Garry had to be double handled at all times. That came about after he broke his arm and they kept him in hospital for almost 3 weeks!! The social worker there was really good and said he should have carers. Until then he didn't. Then the carers started to struggle with him so he was given 2 carers each time. The physio from the Hospice came to observe him being moved and got him the Returns. We had one upstairs and one downstairs. I remember her looking up the stairs at him being moved and she shook her head and said : "God love him".

Marie_14 profile image
Marie_14

Sorry sent that too soon! Was just about to advise that Gerry is assessed again. This thing changes when you least expect it and even when you know what is ahead it's very easy to ignore the symptoms progressing. We don't want to know that do we? Lots of love to you both.

The other Marie x

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