PSP Association
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Decided not to go for PEG

Mom has been diagnosed with PSP in late 2014. As the illness has progressed considerably ,six months ago doc advised PEG tube but none of us including mom are prepared for it...Today is the first day - Mom is hungry but she is unable to take anything down her throat. Has no choice but to sleep empty stomach. Can't express the pain we are going through at this moment .. She is like our kid...Seeing her go thru is heart breaking...

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Dear Sunny,

I'm so sorry to hear about your mother. Do you have Hospice where you are,? If not hospice, is her doctor giving her sedation and pain drugs to make the days of her passing, easier for her? I hope she is being made as comfortable as possible. My heart aches for you during this awful time.

Hugs to you and your family XXX

Anne G.

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I am so sorry to hear that, it is heart breaking! My mom also has refused peg and probilly isn't far behind. I so dread the day!! I wish there was something I could say to ease your pain but there is no pain like watching someone you love suffering, everything about this is so painful to everyone involved!! One day their suffering will be over and we will be left with a new pain and suffering without them, a new chapter to this horrific disease!! I'm sorry , I have no cheerful words. Just remember your not alone, and one day your mom and my mom and everyone else here's loved ones will have peace and will no longer be suffering from anything! Just try to enjoy every moment that you have with your precious mom.

Keeping you in my thoughts and prayers

Love Alli

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My husband had no peg and stopped eating. He had no pain, just got weaker and died peacefully.

Keep her lips moistened, smooth cream on her face and tell her you love her.

If she has pain she can be helped.

I am thinking of you all.

Comforting hug from Jean xx

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I'm so sorry that youre dealing with this. My father originally said no to the PEG but decided to get it now that the time is here.

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Please go for it, if she cant swallow. What is other choice, if she can intake liquid diet, then please give milk with protein powder, and

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That's a good choice, this is coming from someone whose dad did have a PEG in late stages - it just prolongs the suffering in that stage - we understand your pain, when a child feels the pain like a parent - I wish your mother ease and peace - the doctor may confirm but check to palliative meds like morphine but I've read that in this stage the body releases endorphins which reduce or completely remove pain and the let the patient slide into the afterlife

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Totally agree sammy90210, my hubby has had P.E.G. since July 4th 2017, I truly believe it has just prolonged the inevitable, watching and living with this choice is horrific. It is no way of life, watching the pain and suffering constant fear of choking, stressing about every little thing, I often pray that he would just go to sleep and not wake up, it helps that you said about the endorphins releasing in the body, I often wonder what then end will be like for him and when that time is close, will I know the signs. ???? Thanks again to everyone on this site, it truly helps me get through this horrid illness 8 years plus now

Marg H in Barnawartha Victoria Australia

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So sorry to hear about your Mum. My husband was only recently diagnosed as late stage PDP. Because he has a spinal injury, it masked most of the symptoms of this dreadful disease. We were given the information with the for and against having a PEG. After much deliberation and lots of discussion I told my husband that it was his decision, seeing that he was the one affected the most. This was done about 2 weeks ago and his quality of life has improved. Maybe we are just prolonging things but today was his birthday (72nd) and he finished the day saying what a good day he had - family travelling hours to visit. He loves to see the grandchildren. Although he couldn't eat his cake, I put a little icing on his tongue. Unfortunately even though this was a tiny, tiny bit it still started him coughing. Just watching him choke was horrible. We just take things a day at a time these days and just hope we are doing the best for him. We will only know if we made the right decision in time, but so far am glad we did have the PEG. Tomorrow will be our 47th wedding anniversary so I'm hoping it will be another good one.

I wish you all the best. As I keep saying, stay strong, hang in there and tell them how much you love them.

Caz49

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Hi Caz49, I know exactly what you are saying re the choking, Leon (hubby) had the PEG july 4th last year, at first we put little bits of things for him to taste, but got to the stage of choking on everything, even put vegemite on a t.spoon but he can no longer handle anything at all, constantly clearing his mouth with a foam swabby thing, to get the phlegm out, as he can no longer cough it up. Sounds gross but also use swabs to clear his nose, as he cannot blow it to clear gunk away, it is just the most horrid situation to be in.

Hugs Marg H from Barnawartha Victoria Australia

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There’s no right or wrong, just choices being made. My mom’s had a DNR since she was 60yo and doesn’t want a PEG when the times comes. She’s 77 and does not go for tech/intervention, so this makes sense. Yet, I imagine there’ll never be a good time for her to go - some milestone always around the bend. Her diagnosis was in 2016 and the palliative nurse says hospice services will start soon. No one wants to say goodbye or watch a loved one suffer, of course...alas most people voluntarily stop eating leading up to their deaths and there’s no reason to think it’s painful (except to watch. Food is love). Thinking of you and your mom, Sunnypuri. I hope all parties are on the same side re the decision; disagreement over this can be really traumatic and I’m hoping for peace and clarity for you all.

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I agree. Our family was unanimous in the decision. It also depends on the other abilities. For example, Chris could no longer speak and communication very sparse. He was also 84 and deaf.

Its never easy.

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