We are at "that" stage 😢: I'm feeling numb... - PSP Association

PSP Association
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We are at "that" stage 😢


I'm feeling numb as we go through end of life. I feel as though I've been in mourning for almost 6 years. Each loss since diagnosis has brought some mourning....speech, swallowing, balance, dexterity, walking, talking, loss of control of eye movements, bladder, everything! Everything, until he was completely bed ridden. Bob has been on tube feed for over 5 years because of chewing and swallowing difficulties, and now is finally at the last stage of this disease... last stage of life. He looks comfortable and peaceful, sometimes seems aware of our presence. So, so sad. He seems more comfortable now than he has in a very long time. He has diminished to no more than skin loosely draped over his frame, but he looks so peaceful. It's seems surreal to think this is the last and final loss. My heart aches with sadness, but I know he needs release from this diseased body, from PSP.

So grateful for your support!


19 Replies

Love and hugs to you both xxxx

I am so sorry............my prayers go out to you and family.

Love and hugs, laroux! It is good that Bob is relaxed and calm and seems peaceful. It seems he has accepted his state and is not in pain.

Touch him, hug him and tell him you will miss him but you will let him go. The last sense to leave us apparently, is out hearing.

My thoughts are with you both as you come to terms with this final step. You have both waited a long time for the end of this battle with PSP!

Big hug!

Jen xxx

I hope that his final journey out of this world is peaceful and that you can be there to hold and comfort him. I was privileged in being able to do that for Ben and I will hold that with me forever as I am sure it must mean everything to them knowing you are there.

Lovely ve Kate xxx

Hi Joan, I agree with Jen and Kate. Hold Bob, tell him you love him and give him permission to go. Let others do the physical caring, you just do the most important job, being his wife. For all the things I may or may not have done right during Steve's illness. This is the one act I know I got right and that has got me through many a dark night.

Sending lots of strength, big hugs and love.

Lots of love


So sorry, Joan. Its tough letting them go. Big hug from Jean xx

Joan so sorry to hear this. Hold his hand tell him you love him. As Anne has said let others do the physical caring. She has put it very well. So just let him go now. Nobody wants that but in the end we can't stop it? What we can do is make our loved ones know we are there for them and love them?

Hugs to you and family.

Marie x

Larousse, as others have said, now his time is nearing the end, just carry on telling him you love him and show physical affection so he can feel your touch. Tell him you will be OK and it’s time to go, if like my husband, he will definitely hear you. May whatever time he has left be peaceful and pain free. My thoughts and prayers are with you both.

❤️ XxxX

it's even harder when they depart. My prayers go out to you dear.


Hugs to you for this final gruelling time in caring for your beloved husband. I hope it is a good and peaceful release for him when it comes. You must be so wrung out.

Bless you, Laroux XXX

Anne G.

Thinking of you and hoping you all find peace.💜. It sounds like you have been through every awful ordeal PSP can bring. Continued strength as you finish your journey .

Have been thinking of you and wondering how you are doing?

Joyce in Minnesota

Thinking and praying for you both. Be strong.

May your God be with you.


Thank you for sharing your experiences.

Big hug.


Thinking of you and Bob. Lots of love Nanny857 xx

So sorry Joan . Big hugs and prayers for you both love Jo x x

Thinking of you both at this sad time.


Strength and power to you as you get through this transition💐

I am truly saddened Every time I read of another loss to this retched disease. I feel so bad that you and Bob and family have to go through this. And I don't think I could have said it any better about the amount of time that you have grieved. That just hits it right on. That's how I feel too. Just make sure you keep telling him you love him (he hears you and knows your there). I so dread this. I just did the living will and five wishes. I will pray that you and Bob find peace soon. We are here for you. God bless

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