I thought the last 4 years, watching the steady decline, not knowing what was wrong with dad, getting the PSP diagnosis, was hard. These last 4weeks have been terrible. Watching him lay in bed staring into space moaning. Most of the time unresponsive eating very little of his puréed food. He has lost nearly 5 pounds in the last week. Every night I leave the nursing home I sit in my car and sob. I feel like I have been grieving for so long now and he’s not even gone. Last night after he laid there choking on his saliva, he regained his breathing he made eye contact with me (which is rare). In his eyes was a look of “help me”. The most awful feeling in the world. I can’t do anything but hold his hand and tell him I love him. How long must this last? He does not deserve this.
-Thanks for listening. It is so hard to say these things to people who don’t understand PSP without it sounding selfish. I know you all understand.
Written by
tlovins
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Sadly no one can wave the magic wand and make it all stop so just carry on what you are doing, being there for him, letting him know you love him and talking about happy memories you have of himd being your Dad. Bih gug
We all completely understand how you’re feeling ... just continue what you’re doing holding his hand and telling him you love him. You are showing tremendous courage ... sending so much support and love your way .
I can't add anything to what Jude has said, other than let you know I feel for you and admire you for continuing to give your Dad such great support. Wishing you strength and comfort.
You are doing an amazing job in an impossible situation. I completely get what you mean about grieving already. My lovely husband Steve passed away on Boxing Day but I think I started grieving back in September and I feel like I have been living in a different universe since September. I used to regularly sob all the way home from the hospital, so all that your feeling is quite normal in this new normal. Try and stay strong and keep on doing what you are doing. Sending lots of hugs
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