Feeling sad: I thought the last 4 years... - PSP Association

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Feeling sad

tlovins profile image
10 Replies

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.

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tlovins profile image
tlovins
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10 Replies
dollydott profile image
dollydott

Oh bless you. My heart goes out to you it must be so difficult seeing your dear dad like this. It's just horrible what these conditions do.

Just continue doing what your doing holding his hand telling him you love him. You will be a great comfort to him.

Thinking of you and sending

Lots of love

Lynda xx

tlovins profile image
tlovins in reply todollydott

Thank you Lynda!

AliBee1 profile image
AliBee1

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

AliBee x

tlovins profile image
tlovins in reply toAliBee1

Thank you !

LostinHeadSpace profile image
LostinHeadSpace

At least you are THERE for him to make eye contact with. It sounds agonizing. We're thinking of you as you go through this.

Hi tlovins!

I understand it and I feel supportive. I think your situation

is very hard and unfair.

A hug and courage.

Luis

One more thing:

Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Big hug.

Luis

1941mary profile image
1941mary

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 .

Jude

AJK2001 profile image
AJK2001

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.

Hiking13 profile image
Hiking13

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

Love Sarahxx

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