Don't know what to do

[am2015]

My mum has gone from eating last Sunday in a restaurant to having a temporary NG tube and having a Peg fitted on Tuesday. She has been sleeping the last 3 days nearly 24 hrs. Waking up for a few minutes at a time.

We are absolutely devastated at the rate of decline. All her bloods have been tested and there is no sign of any infection.

I'm asking the impossible question, that I don't really want the answer for but are we nearing the end.

I'm not ready to let go, selfish as that may be but also don't want this prolonged. It's absolute agony, I can't stop crying.

[doglington]

So sorry to hear this. I hope your mother improves.

Big hug from Jean xx

[am2015 in reply to doglington]

Thanks, I hope so too.

[abirke]

My husband lived over a year with his PEG tube though I must say he did sleep more with it...

[am2015 in reply to abirke]

It's awful, sleeping the whole day. Just heartbreaking.

[Escada29]

Hi if she is nearing the end why and how are they going to operate on her???

[am2015 in reply to Escada29]

I don't know if it is the end, you just never know. We're Muslim and in Islam you have to do everything possible to try and save a life. The procedure itself only takes 15 minutes. I just hope whatever happens it is for the best.

[abirke in reply to am2015]

Yes it's not a difficult procedure . A tube goes down esophagus, to the stomach and inch or so above the navel. they then "pierce" the stomach , pull the tube through and is secured so it cannot slip out....then liquid food is easily poured in, ensuring nutritional survival .

[Sonia1970]

I'm so deeply sorry my name is Rebecca even though I don't have PSP I do however I have the rare neurological brain disease cortisal basal ganglionic degeneration I'm only47 I here you and get what your saying in relation to the peg tube I have trouble swallowing but persevere because when the peg was suggested I cringed god bless you wish I had an answer for you but sadly I don't take care Rebecca

[am2015 in reply to Sonia1970]

Thanks Rebecca. You are so very young to be diagnosed with CBD. It's so difficult for everyone around. As a family we still count our blessings that we are able to get the care we need, not everyone is able to access the care we can. The peg is not so much a choice for us but just the next step. I wish you and your family all the best. Afshan

[Sonia1970 in reply to am2015]

Thank you all the best

[Duffers]

Hi. If your mum Has a peg fitted dont let them send her home until everything is in place and you and your family are happy that you know what to do with the feed and trouble shooting the pump if it goes wrong. I hope your mum improves. God bless. Marie

[am2015 in reply to Duffers]

I definitely will Marie, thank you so much for your advice. I just pray that God makes it easy for everyone that is suffering with this horrible illness and their families.

[Duffers]

A definite amen to that am. Marie

[am2015 in reply to Duffers]

All the best. Afshan

[cabbagecottage]

What's the saying it's not over till the fat lady sings . My husband has been having these long what I call now sleep attacks for quite a few years .

I have asked over and over to let him have peg fitted but they have refused .

They have been wrong in my opinion once fitted it be so much less stressful for bother him and myself trying stressing finding a slot / time when he is responsive to eat swallow safely .

Has been taking the Nutilis drinks and thickened fluids for a few years . My mum had a peg fitted for three years with no problems at all .

[am2015 in reply to cabbagecottage]

Only God knows, when it's time it's time. For now we'll do whatever we can for Mum.

The sleeping all day is scary as we had never experienced it before. I'm shocked that they won't do the Peg for your husband. Having the temporary NG tube has helped because we can give mum feeds, the fact that she is diabetic adds another complication because her blood sugars drop. Maybe get another opinion about the Peg. I'm not sure which part of the world your in, but definitely worth looking into again.

Eventhough we never wanted to go down this route, I can now see that it will take off the pressure of feeding. Especially when you know swallowing is a problem, dangerous to give anything when they are not completely alert.

I hope you find the help you need. All the best.

[tammylynnbest]

im going through the same thing with my mom my dad and i are the caregivers and she cant eat anything now they suggested a feeding tube immscared it will make it worse she said she doesnt want to live if she has to get one this is the worse disease the doctors havent really descricbed the diease to us they just called and said that was what she had so ive found this sight but ive learned alot from it reading peoples stories im scared for my mom