Hello all

I haven't wrote for a while, life pretty hectic which I don't have to explain to you all caring for someone with psp does that. Mums weight is now 6 stone refused any supplements or to be fed via her peg, only lets us use the peg for medication. Dietician has told her she's very malnourished and honestly told her there will only be one outcome, mum said "good". Her eyes regularly close and they are clamped shut neurologist have told us it is part of psp and they will probably stay shut eventually. Just another shit part of psp, so mum can't walk communication almost gone, chokes on the softest of food and to top it off she's going to loose her eyesight... why oh why 😪😪😪

23 Replies

  • Hello darling

    Why oh why indeed?

    I suppose because life with Psp is total shit!

    I'm so sorry to hear this current news about your mum, and as she doesn't want intervention it makes it even bloody harder!

    All you can do, is be there for her I suppose

    Much love n big hugs x

  • Wise words.

    Its all we can do,

    I struggle to be that strong most days.




  • I agree keviin


    lol jill

  • Perhaps she has had enough and want's to go. My hubby indicated he no longer wanted to be PEG fed or receive water. I asked him if he had had enough and he indicated yes. The yoghurt he could swallow was kept in his mouth until it dribbled out. The GP and hospice agreed I should abide by his wishes and he died peacefully 11 days later. His eyes were open until two days before he died and he was still squeezing my hand in response to questions until then. He indicated he wasn't in pain and wasn't on any medication. He went very peacefully. Those last days were very distressing for me and our sons but appeared the most peaceful for my darling, no agitation, his bowels stopped working as nothing was going in so I didn't have to keep cleaning him up. I sprayed his mouth and eyes, cleaned his teeth and washed him gently in bed. No hoisting. I spent the time sitting with him, holding his hand, recounting good things that had happened over the last 44 years and telling him how much I love him. He was a Christian and knew where he was going so wasn't fearful, and let himself drift peacefully away.

    While your mum still has some communication, find out what she wants to happen next. My husband, who had left all decisions to me over the last few years, made the final decision and I'm happy he finally got back some control to make the most important decision anyone can make.

    ❤ XxxX

  • That's really lovely, Bev. Just what we all want for ourselves and our loved ones. Comforting to know it can be so peaceful. Thanks. Love, ec

  • ❤XxxX

  • Bev has said it all.

    Be strong for your mother.

    love, Jean xx

  • My experience was very similar with my husband. After he quit eating or drinking, it was the most peaceful time of the disease. It was truly a gift, and I know he is in a much better place and free of this dreadful disease.

    Hugs to all of you who are in the shoes I was in for so long as caregiver. If I could take away your worries, exhaustion, and emotional torture, I would. It helps to know you're not alone.


    Horse girl

  • Oh, Nanna B. Thank you for sharing your experience. It makes me both sad and happy at the same time.

    I found this blessing from the Book of Numbers. I hope you like it and wish it for you:

    May the Lord bless you,

    May the Lord keep you,

    May the Lord let his face shine upon you and be gracious to you.

    May the Lord uncover his face to you and bring you peace.

    Love R x

  • Thank you R. I also pray this for you and all on this site.


  • Yes Bev such an inspiration to us all xxxx

  • Hi

    Gosh this is tough for you.

    I read this to Liz. She said she wishes that when it gets close she will have the strength to do what your Mum is doing.

    She added that when life gets so poor she would want to do the one thing in her power, to bow out with dignity.

    Its just her view.

    I do hope it isn't upsetting on top of what you are already coping with.

    I dread the day I am faced with this.

    Warmly and with some tears



  • em too!!

    lol jill


  • Oh richmond, my heart goes out to you.

    Am at exactly same stage with my mother( except she is not refusing food). Knowing that Mum has finally also almost had her sight taken from her as well just kills me.

    Now is the time when touch and sound become so important.They are all we have left.

    I send you courage and pray that your poor Mum's wishes will soon be answered.She is very brave.


  • Your post is painful to read but that is the reality of PSP and the cruel way it takes the sufferer bit by bit. I think your mum is a brave lady and as others have said, is taking control of the end of her life. Sending you love and a hug as your mums journey nears its end and I wish it to be peaceful and painless.

    Kate xxx

  • ii agree k

    lol jill


  • That just is terrible, to watch all this and how are you coping at all, how do you get out of the house just to do basic things like hairdressers shopping etc. This psp is an awful illness, my husband comes home after 6 weeks in hospital tomorrow, I'm on my own out in the country. God bless you.

  • I have an understanding and am extremely sorry.

    My mom is in a similar situation, her peg has been in for over two months. The care facility has just told us she indicated she no longer wanted the tube. Our family doesn't talk about the end results, Moms reguest.

    If you don't mind me asking, how long has mom had the peg, and is she on any meds for a pick me up, Happy Pill?

  • I really feel for you having recently experienced the same thing myself, Keith just didn't want to go on any longer and refused a peg when his swallow had gone completely.

    Like NannaB says it's good that they can have some control, there comes a time when they can't take any more, heartbreaking for us I know but better for them, Keith also went very peacefully and pain free with all his family around him, stay strong it's all you can do.....

    Love and big hugs....Pat xx❤️

  • Hi Richmond, such a hard time for you. Praying that you find strength to get through this. Sending you a big hug. Nanny857xx

  • Thankyou all for your replies xxx

  • It causes utter anguish , wanting them to stay with you but wanting them to be free of PSP. My husband has lost weight and now has glaucoma. Horrid to see the illness progress. Sending you love and hugs. Take care. X

  • Yes, that is PSP the "s" is in the middle of the two P's. I hate it, rail against it and everything you mention we are going through as well.


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