Making the right decision.: My mother was... - PSP Association

PSP Association

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Making the right decision.

gary profile image
gary
4 Replies

My mother was diagnosed with PSP 2 years ago iam living in New Zealand, mum is in a nursing home but i feel so torn, as to go back and care for her, she has now had the peg inserted and i dont know if that was the right choice, she now has red areas in her groin so iam told and so is spending most of her time in bed when i got to finally speak to her, she sounded so depressed, this is so hard.... Cathy...

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gary profile image
gary
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4 Replies

Hi Cathy

Yours was not an easy decision to make. Unfortunately no one can make it for you. Each one of us knows our own situation and possibilities. I do feel extremely sorry for you because it is such a difficult disease to deal with. My husband was a different person when he contracted PSP. I sometimes felt I was dealing with a total stranger.

It seems to me that you love your mother very much therefore I'm sure you will do what you can.

Warm regards

Lina

Julie-Alabaster profile image
Julie-Alabaster

Hi

It is a very very difficult disission to make and at the time we went down the peg route as the alternative was - well you know. However it did extend my dad's life but the quality of his life was very poor after it was fitted. He was contsantly pulling the tube out which meant he was in and out of hospital for the last 2 years and probably spent more time in hopsital than out. It's very very hard but in heinsight all of us (mum, sister & brother) regretted having it fitted. My dad died of bowl cancer caused by the liquid feed and starvation in the end so it just prolonged the pain he was in. However every case is different and it may do wonders and be great. I just wanted to give you the truth of what happened to us.

I hope you and your mum are OK and thinking of you with this awfull illness. Make the most of your mum while you can.

x

jillannf6 profile image
jillannf6

hi

i have psp and

i woudl not personally want a peg tube fitted as i enjoy my food and would not want 2 continue just for the nourrishment

the speech therapist explained all the pros and cons to me - at present i use thick & easy for liqudis which is enough

but each case is unique and perhaps our mum is sitll able to do a liltte for herself?r

keep smiling

love jill

LesleyB profile image
LesleyB

Hi Cathy

Its a terrible condition and it extremely hard making some of the decisions that have to be made and you just do the best you can. You love your mum very much and that's what matters. Take care of yourself and I send my love to you and your mum

Lesley x

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