Knowing that I missed it and living with it

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KatieNBoyd

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Here I am going on 9 months since my PALS death

I have gone to grief counseling, I see a therapist and I write in my journal. There is the part of me that knows that I did every thing I was suppose to do. But there is the part of me that repeats over and over the night Jon died.

I got him ready for bed after he had walked in to the dining room with his walker dressed in his boxers and fuzzy socks. He had not eaten since November. I gave him an orange tootise roll pop. He crunched it and drooled all over himself but he seriously enjoyed it. We went to bed. I got him settled in his hospital bed and laid in the twin bed next to him, as we had been doing since beginning Hospice in August. No trilogy (he refused to use it the last few weeks) early in the morning I remember hearing something. I remember thinking that he was just clearing his throat like he always did. Then I went back to sleep. When I woke up he had died.

I wish I had said “good bye” when I heard him, I wish I had given him that last kiss. Do you think they know that we weren’t there? Or do they feel so comfortable knowing that we are alright?

How do the rest of you deal with it when you were not there when your PALS passed on?
 

gooseberry

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You survive...you put it in perspective...I wasnt there when steve fell....I wasnt there when he coded. I wasnt there when he passed. I did see him between the code and his passing. I wasnt there because I was trying to do what was right for the family and for him...following his wishes.

At some point, you have to give yourself a break.
 

lgelb

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Hi, Katie,

I can't address your exact scenario, but I'm sure Jon felt comfortable that you were around, part of what enabled him to let go and find his peace.

Nine months is not that long. I still have a kaleidoscope of memories nearly 3y in. It sounds like he had a good time that night and went to sleep content. He felt your kiss and your love in everything you did tucking him in. You can be very happy about that, and if you are not yet, one day you will be.

Best,
Laurie
 

Manhattanite

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It's only been 1.5 months for me. I was asleep in a separate room when my PALS fell and stopped breathing on the bathroom floor, so I didn't hear a thing. The way I deal with it is by telling myself that he was at home and I was in the other room and that it happened early in the morning at a quiet time, and that I was the one who found him, not an aide or someone else. I also tell myself that the way it happened was the way it was supposed to happen, because there is nothing in the world I can do now to change what happened.
Hugs.
 

affected

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I truly believe the first year is full of many very strong deep emotions in response to the awful loss. It doesn't always matter what you are told or what you know logically, you have so many deep emotions to deal with.

Let yourself sit and ponder how many times and ways you showed your love to him - find some great examples that have many beautiful feelings in the memory. When these awful feelings of failing to wake properly and give him one last kiss rise, grab the memories as a shield and allow yourself to dwell on these things instead. It will take effort and it won't always work, but you can take some stand against these awful feelings.

Guilt of any kind is a useless feeling - it won't take you anywhere good.

I believe you were there - you were right beside him. He may have been asleep when he passed, I am certain he was not awake and in distress and crying out for you inside. He was letting go in the still of the night and you were with him.

Please know the grief is a long process. Laurie describes it well - kaleidoscope of memories nearly 3 years in. I'm in my 4th year and this is the year I finally found a turning point the grief. I did not 'get over it', but the true rawness has finally eased off.
 

mommychops

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It's been only one week for me, but i try to focus on all the things to be thankful for. My pals died in the early morning hours. i was right next to him...and listening on the baby monitor. what i was hearing was the bipap, not my son. i am so thankful that he died peacefully.
 

Manhattanite

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I can't believe we not only had to deal with the disease and how it destroyed our PALS, but in addition we have to suffer grief for years. I guess this is life.
 
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KatieNBoyd

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Thank you all for your thoughts and advice.

I know in my heart and my soul I gave him exactly what he wanted. To be safely and lovingly at home.

My therapist yesterday suggested that I picture in my mind building a bridge (I am a visual learner and thinker). A little at a time this bridge will be built and in time I will be able to use it.

Love you all
Hugs
Katie
 

gooseberry

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The first year I was really mad. Mad because I wanted Steves passing to be different. Mad because I wanted to be there. Mad because I had something else to deal with. Then, after about a year, I realized ALS didnt run my life anymore. Things that happened were with Steves disease and from his choices. It was very freeing to realize I wasnt responsible....because I felt responsible for his death.

That time was when my son and I decided to change our life. We picked up new hobbies, traveled to places Steve wouldnt go, and started a new life.

Tillie is right, the first year is packed full of emotion....and sometimes you dont even realize it is there.
 

Barbie

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I was not there when my Lonny died either...I was mad, and so disappointed in life for taking that away from me. I had envisioned myself holding his hand and comforting him and letting him know it was ok to leave. I knew time was short for him, but circumstances arose and I had to leave the house. he died before I even arrived at my destination 30 minutes later. why...I don't know. I don't understand either.

but I am not mad anymore--I have come to terms with that part. I don't feel guilty about it but I do feel sad about it. doubt that will ever go away
 
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