Nobody told me

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Narrowminded

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Sending huge hugs. I cannot imagine what you are going through right now, just know that you are in my thoughts and I am sending hugs for when you need them

Hugs,

Sue
 

Manhattanite

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One week after the funeral and I still feel this is the most traumatic experience of my life. I am shaken when I think of all that happened in the last two years. The craziness of this disease became the new normal.
Now I miss my PALS more than ever because I wish he were here to help me navigate the recovery period. I always told him he was my anchor. I lost my anchor and I am drifting in unchartered waters.

I return to work on Monday. Perhaps that will help me. I insist: I thought I was prepared for my PALS death but I was not. The last two years were a different type of grief. Now it's the real deal grief. Ugh.
 

KateEmerson

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Apr 23, 2016
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Thinking of you Manhattanite and wish I had some words of wisdom that would help. I have suspected for awhile that I will feel just what you describe when my PALS goes, the trauma and the grief. Wishing you strength and peace. Kate
 

affected

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lala land
Nothing prepares us for the other side - I'm glad I never tried to imagine it because I would have been dead wrong. But one day at a time still, when that's too much, one hour at a time xxx
 

KatieNBoyd

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Manhattanite, I feel your pain with you. I am so sorry for all that is in our heads when our PALS dies. Like a very very bad movie that keeps playing.

My PALS died in December and we waited to have his celebration here in June. It is like I have been put back to square one again. Going back to work helps. Talking to my PALS out loud helps and makes me smile.

I know that people tried to tell me how hard it would be but I always thought I was tougher. I am not, I am just like everyone.

We will get through this. I try to replace the bad pictures in my head with the beautiful smiles he gave me, The pictures that I have in my head of the fun and loving times that we had together. Replacing those pictures in my head of his illness with the beautiful ness of his eyes as we shared our life together. This is what I do I hope that you too can find a way to replace the images.

Sending you hugs and strength.
Katie
 

Manhattanite

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Messages
209
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Yes Katie, it is like a bad movie. My mom went through the same thing with my dad who died of Parkinson's (except that he "lived" for 20 years with the disease). After he died, she would tell certain stories over and over and continues to this day, 10 years later. Now I see why she does that: there are moments that keep replaying in my mind, traumatic things we went through, moments that marked a change. I also thought I was tough and that I had the tools to deal with this.

Also what happens is that after the funeral and the initial shock, everyone returns to their normal lives, which is natural. But when you are the surviving spouse, you remain in your home with all the remains of a life lived together, and with a new future that you have to face all on your own, at least initially.

Today marks 3 weeks after my PALS death and now our apartment looks exactly the same it did prior to the beginning of the disease: free of medications, ventilator, suction machine, cough assist, wheelchair, rollator, IV pole, recliner, shower chair, commode, urinals, diapers, tubes, filters, feed bags, Jevity cans, gauze, latex gloves, masks, syringes, supplements, 7 head supports and braces (none of them worked), body pillows, and so on. I donated everything to a local ALS group.

I am tortured by how much my PALS suffered. What happened was meant to happen and there is no changing it - that was his fate, but it still hurts when it happened to someone you love.
 

Jrzygrl

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Joined
Feb 14, 2017
Messages
611
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Lost a loved one
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08/2014
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NJ
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X
Manhattanite,

I hope you find peace in the coming days.

What a wonderful thing you have done for others by donating to the ALS group. Hopefully it makes someone else's burden lighter.

Your love for your PALS still shines bright. Hugs.
 
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