Near the end: The Hospice nurse told me... - PSP Association

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Near the end

tlovins profile image
20 Replies

The Hospice nurse told me yesterday that dads bouts of unresponsiveness is him detaching from this life. So here comes the flood of emotions, relief that this horrid journey is near the end, guilt that I feel relief, anger at what PSP has done to him, scared that he is afraid of dying. The nurse encouraged me to make lots of visits and tell him that it was okay to let go. It has been 1 year since PSP diagnosis.

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tlovins profile image
tlovins
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20 Replies
enjoysalud profile image
enjoysalud

I feel for your pain. I relate to your guilt. I encourage you at each visit to tell your dad how much you love him and what a great father he has been.

I turned 78 on Thanksgiving day, 2018. I lost my barely 55 year old son on May 4, 2017. I had lived a full life and would have gladly traded my life for my son to live. He was talented and compassionate. PSP came a calling and now he is no more, but I cherish the 55 years of memories I shared with him.

As you say goodby to your father....remember all the wonderful memories and times together.

Los Angeles, CA, USA

Bargiepat profile image
Bargiepat in reply to enjoysalud

Beautiful words................

ninalulu profile image
ninalulu in reply to enjoysalud

be very strong

raincitygirl profile image
raincitygirl

Dear Tante,

Sympathies for this vigil time: I know your emotions - They are all so real and they coincide.

Please don't feel any guilt: Everyone alive in the same situation, including your father, would understand how someone would be relieved that this awful time is over. HE is probably relieved - ready for the End! You loved him and did your best: that is what counts.

No doubt you have heard many times that the last sense to go is hearing: that our loved ones can hear long after they can open their eyes, or eat, or speak...Just keep telling him how you love him, and as Margarita says, that he was a great father, and it's ok to go now - he will be remembered and honoured.

Thinking of you tonight XXXX Anne G.

tlovins profile image
tlovins in reply to raincitygirl

Thank you Anne for your wise words. That’s exactly what the hospice nurse told me, “you’ve done everything you can do for him, now all that’s left to do is keep telling him you love him.”😓

Tippyleaf profile image
Tippyleaf

Sorry to hear this news

I hope all remains calm and peaceful

Sending love and hugs at this difficult time

Tippy xxx

Heady profile image
Heady

Hi, I agree with your nurse. Tell your father you love him and its alright to let go. I did that with my husband and he breathed out and went. The relief was and still is enormous. PSP can only be allowed to rule someone's life for so long. It's time for your father to take control and let its grip go.

For you, there should be no guilt. It is perfectly normal to feel this way, after such a horrible disease that has consumed your Dad. Grief will take you to various places and feelings, try hard not to let guilt rule. I am sat here, facing the second anniversary of my husband's death, Feeling very sorry for myself. Of course I want him back, but under no circumstances would I want him with me, if PSP has got to part of the package. The relief is still with me, that he is no longer suffering. It's called love and you should never feel guilty for loving somebody!

Sending huge hug and much love

Lots of love

Anne

Dadshelper profile image
Dadshelper

It is a very difficult time but as others have said, be there and let him know it's ok to go. When Dad passed I was there and got hit with shock, sadness and then relief. He was finally free of this disease.

Ron

AnneandChris profile image
AnneandChris

So many wise words from others on this site, who have already travelled this path. Take comfort from them and know that you loved and are loved.

My thoughts are with you, keep on keeping on...

Hugs

Anne

demlac profile image
demlac

Oh shit

This disease is horrid

Thinking of you and yes spend all the time you can, say everything you want to say

LOST TIME IS NEVER FOUND AGAIN

X

A big hug.

Luis

AJK2001 profile image
AJK2001

Thinking of you and so understand your conflicted feelings.

xxx

Hiking13 profile image
Hiking13

Thinking of you and sending big hugs.

Love Sarahxxx

dollydott profile image
dollydott

Such a sad time for you

You are in my thoughts

Sending love and hugs

Lynda xx

NHGrace profile image
NHGrace

I hope you find peace in your ability to sit vigil. My mom died in her sleep and while everyone says it was “the best way to go,” and I am unguiltily relieved for us both, I had assumed I’d get to say goodbye, that I’d be able to give her the deserved focus of my attention (rather than be chasing two kids and unpacking boxes because we’d moved 2 days prior)...alas, be greatful for what you have now and that this journey is almost over. Best to you both.

ninalulu profile image
ninalulu in reply to NHGrace

she die the way she want to go. she is happy and in heaven

NHGrace profile image
NHGrace in reply to ninalulu

Thank you. I do believe that as well. The vigil would’ve been for me, not her. She would never have wanted to be bedridden or unconscious. This just shows the wide range of emotions on the roller coaster ride of PSP, eh?

Greens profile image
Greens

Bless u all I have a tear in my eye so true your emotions are normal x

Megabrew88 profile image
Megabrew88

Thinking of you in this difficult time!

Love and light,

Mx

Nanny857 profile image
Nanny857

Thinking of you and your dad at this difficult time. xx

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