Drama at every step - update: Firstly... - PSP Association

PSP Association

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Drama at every step - update

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Firstly, thankyou to all you amazing people who took the time to respond to my previous posts. Your words of advice, supportand love mean the world to me. Mum is NOT going to continue with the PEG feed, and wants to continue being fed by mouth, we know this is risky but do it in a controlled way. 1/2 teaspoon at a time. She seems to be tolerating this ok but doesn't actually eat alot. I kind of feel that this is letting nature take it's course which feels the right thing to do. Eventually she will refuse food altogether, we will just cope with that when it happens. Her brain has been dying for such a long time, now it's time for her body to catch up.😒 I am in awe of her and all you other lovely people who are dealing with this vile disease. For now we are just loving her each day and telling her not to be frightened. Thank you all so much. God bless ❀❀

15 Replies

Thinking of you all, your mum is very loved by you all I can feel it in your post, big hugs Yvonne xxxxx

Much love to you all.

It is an individual decision and a very hard one at that.

Hope she enjoys eating what is she can .


Love to you all.

from Jean xx

The best but very difficult decision I believe

Hugs x

A difficult time but it’s good your mum is still able to make decisions. May whatever time she has left be pain and infection free.


Blessings and comfort for your M and you all as you support her and each other through this very sad period of gradually letting go.

Careenh God Bless your Mum and you. This is not easy but it seems like the right thing for her. Like everyone with PSP she has suffered so much. Take each day as it comes.

By the way her brain is not dead although some parts which control different functions maybe affected by PSP. She will totally understand all you and everyone else says. However she may not be able to reply. So tell her you love her and what a great Mum she is. She will hear you and it will comfort her to know she is a good Mum. Remember hearing is the last sense to go. So be careful what you and family say when you are with her.

It will also comfort you later to know you made her feel so loved towards the end.

Hugs to you Careenh.

Marie x

Will be thinking of you and your mum, Careenh! It sounds like your mum is in control still. Hope she enjoys tasting the small amounts of food.

If she is calmer, then this is the right decision, and was hers to make.

Big hugs

Jen xxx

I believe your mum has made the right decision which she feels is best for her although very difficult for you. My thoughts are with you. Love Jxx

your love and support for your precious mum shines through

I will be thinking of you xx

Hope your mom can get a little pleasure from special spoon fulls of her favourite things.

Thinking of you all

Love Tippy

Love and Hugs back to you Careen XXX Your post had a sound of peace.

Well done, you :-)

Anne G.

Dear Careenh

Watching someone leave you is so hard. I lost my Mother in February, thankfully not to PSP, but due to an incredible age and Cancer. Double whammy as my darling Chris deteriorated almost as soon as she died. Just be there and love as much as you can.

My heart goes out to you

A x

A big hug.


Careenh, It sounds like you're following her lead, and really working through exactly what she wants.

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