Feeding tube...??: It’s been a while since... - PSP Association

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Feeding tube...??

cayabrewer profile image
10 Replies

It’s been a while since my last post... but Nela’s (my Mother in law) PSP is moving very fast. Today, the doctor mentioned the possibility of a feeding tube (directly on her stomach... sorry, I don’t know the technical name)

Any thought? Always happy to hear from you guys... even on these topics.

Thank you and stay safe

Caya

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cayabrewer profile image
cayabrewer
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10 Replies
sammy90210 profile image
sammy90210

Hi Caya

It's called a PEG tube and 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 to friends etc and suddenly lose the ability to eat and drink then it's fin

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

Please search for "peg tube" on this forum for other people's opinions

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)

key4u profile image
key4u

Our person decided no tubes in their Anticipatory Care Plan so was an easy decision to say no to that and we just kept on struggling to feed but it’s manageable by adjusting purée thickness and I recommend spoons made of something easy easy on teeth. Travel sickness patch called Scopdern blocked the choking on saliva which gave more energy for swallowing. Supplemented with Calshake from Dietition to keep weight up. Used stand aid as much as possible and cycle pedals to keep digestion working.

Fairygirl13 profile image
Fairygirl13

Hi Caya,

My Dad is in the advanced stages of PSP and he has always been steadfast in his decision that he wanted a PEG tube fitted.

He had this done in mid January and it was very much his choice, unfortunately his procedure was not straight forwards and after the first attempt he ended having this done under a general anesthetic. He spent 2 weeks in hospital as he then developed a UTI.

He has experienced a considerable deterioration since then. I have to respect his wishes but if we had to choose again I would ask him to reconsider his decision.

Best wishes to you,

Sarah

Inarticulate profile image
Inarticulate

Hi cayabrewer.

If Nela is able to express her wishes, just ask. PSP strips away so much that where there isn’t any quality of life and your mother-in-law don’t want to prolong then a PEG is not a wise decision. It’s not a decision I wanted to make on Dads behalf so we had a palliative care plan decided very early on. It’s a decision with consequences either way.

Hugs x

Dorothysdaughter profile image
Dorothysdaughter

Hi CayabrewerMy mom initially ( earlier in her PSP battle) said she wanted one. We then went and had a consultation with a gastroenterologist and his take was basically you don’t want one early because of the risks so basically wait it out until the very last minute. As her PSP progressed she changed her mind and didn’t want one because she knew the last thing she could do was eat would be gone. As she couldn’t swallow anymore she just made the decision to stop eating and drinking altogether. We put her on hospice and she passed very peacefully her own way.

lesauerbach profile image
lesauerbach

Hi. My wife had PSP, lost her ability to swallow, and had a feeding tube for an extended period of time. I am so glad it extended her life. It was not overly invasive, could be easily disconnected when we went out, and automatically provided the right food and water. I would do it again, no question.

Fjrose2 profile image
Fjrose2

Hi, Your story is identical to my Wife. She went thru the same things on her Journey with PSP.

doglington profile image
doglington

I agree with Sammy. My husband was certain he didn't want one and took control and refused to eat when he was ready. However by then his quality of life was really poor. He was able to enjoy puried food until then. If he had been unable to eat without choking but still able to enjoy other things I might have tried to persuade him. It felt important for him to have control when he had lost control of everything. Jean x

Jpinckney2usmc profile image
Jpinckney2usmc

My wife got one a year ago. She was unable to swallow anything. Without it I believe she would have died.

NannaB profile image
NannaB

Getting the PEG was a really good decision my husband made. It gave him a better quality of life. No more struggling to swallow, no choking, better skin condition due to nutrients in the feed, no constipation as he could get more liquid into him, we went out to meals with friends as he had a pump fitted to his wheelchair which fed automatically, he could still swallow ice cream, we had regular outings until 2 weeks before he died peacefully on no medication , no chest infection or other condition. He decided he didn’t want to live any more and chose not to be fed, thumbs up and down was his only way to communicate and he pulled at the tube which led to my question, have you had enough. The GP came and questioned him and agreed that I should stop feeding when C put a thumb up to the question, “Do you realise you will die within in about 2 weeks with no food or water”. I gave him mouth care so sprayed water into his mouth but didn’t give any other liquid. Our friends and family came to say goodbye and he managed to do his funny humming laugh and squeeze their hands until 2 days before he died when he just went to sleep and eventually left me. The main thing for me was that he made the decision to be fitted with the PEG and he made the decision to die. Best wishes.

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