Peg

[blackcushion]

Hello everyone mum is going to be assessed for a peg soon, I don't think they will fit one as my mum just pulls on her underwear that she wear over her pad at night that her underwear is always ripped from all the pulling , it worries me if she has a peg she will just pull on it all night.

[jillannf6]

Hi,

Imhave decided not to have a peg when the time ,,comes for several,reasons

Lol,jiłll

[SharonAB]

Dear blackcushion,

There is a huge amount of debate amongst people on the values, advantages and disadvantages with having a PEG fitted for someone who has PSP.

I strongly suggest you continue to get as many details and research as possible - on the 'good' and the 'not so good', for as I understand there not only is the consideration of when one is required or should or should not be fitted and 'possible' alternatives, there is also considerable debate on when it should or can or could be removed (with quality of life issues).

All extremely difficult decisions to make for anyone...

and then for which added sometimes the family (and individual with PSP) has limited involvement as government legislation or hospital or care homes has precedent if written requests and requirements are not documented in detail and circulated in advance.

Regards,

Alana - Western Australia

[dalestafford]

Hi peg, it is a very hard decision. My mother has had PSP for 7 years now, she stopped eating and drinking last April. The specialist suggested a peg but she said NO on quite a few occasions, dad eventually talked get into it, It was hard seeing her unable to eat and drink and she was becoming very weak and feable, she was close to the end and she went ahead with the peg, it is now nearly a year later and we had to put her in a nursing home at Christmas. She had pnumonia and had fallen and her oeg dislodged so they put another one in. I personally don't think she has any quality of life, her sight is very poor, she sits in a princess chair all day, she cannot talk and can barely squeeze our hands as a form of communication. Her breathing is strained she currently has a Urine tract infection due to the PSP not sending the message to her brain to release the muscles to enable her to void. This will continue on and only get worse, she looks empty and so trapped. It saddens me so much to see her like this as I know it wasn't wat she wants or wanted. I'm sure she knows I can see her suffering but I can't help her. dale

[jimandsharynp in reply to dalestafford]

Dale, I share your pain. This is a difficult decision and you had to honor your dad's wanting the PEG but now you see the results. Hang in there my friend. Jimbo

[SuzeHope in reply to dalestafford]

Such a hard time for you, stay strong, and know you have support from the group here xx

[Hummingbird_]

Hello Black Cushion,

There has always been a big debate as to the suitability of fitting a PEG to a people with PSP. A question posted on Face Book a few days ago was; Does the peg Prolong Life or Prolong Death? It is indeed a matter of opinion.

The main thing to think about is 'Quality of Life' and possibly not longevity - none of us want to lose our loved ones but none of us would want them to suffer either.

You can only do what you feel is the best for your Mum at the time - but do ask about things; how it will be maintained, what will happen if she pulls it out; will it stop here from choking on her own saliva; will it enhance quality of life long term, etc

If you do decide against it, please ensure the paperwork is done correctly to cover ALL forms or ARTIFICIAL FEEDING - because it does make a difference.....consequently we had a lot of unnecessary upset when we needed it least.

My thoughts are with you at this difficult time and I wish you and your Mum all the very best.

Regards,

Tree Hugger x

[blackcushion in reply to Hummingbird_]

It's such a hard thing to decide I'm lucky enough to have three brothers and we all take it in turns to stay the night with mum. The careers wont do anything with the peg if mum has one,

[wifemo]

Hi blackcushion -

Can your mum give a decision whether she does or does not want one if it is offered?

Tony was asked quite early on, when he could still give a coherent answer, and he was definite that he didn't want one. That made it easier when it came to the crunch and his wishes were respected.

Best of luck.

Mo

[blackcushion]

Two months ago mum said she wanted peg fitted coming to the house to assess mum as the upheaval of getting mum to hospital which is an hour away , mum can't walk or even stand now, speech therapist don't think they will do it as mum's gone down so much in the last month or it will be US the four children to decide , heart breaking times x

[jimandsharynp]

I assume it is your mom's wishes to have external feeding tubes. That being the case perhaps she won't remove the tube and accept that it is doing it's job. You won't know until you try. Perhaps someone else has a solution for you, I pray so.

Jimbo

[carolinesimmons]

That is always a possibility but it is not easily pulled out. More likely she will disconnect the PEG from the food line. To combat that, my husband gets all of his liquid food pumped during the day (at 110ml) so the pump is not on at night. The PEG is held in by a balloon that is inflated. I would think it would hurt her before it would come out.