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!
Joan
Written by
laroux
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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.
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.
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?
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.
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.
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 .
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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New Stage
My husband Tony sadly died on Friday after suffering for many years from PSP. 
Fast Track CHC/End of Life Care
