I never imagined it would hurt so bad....

[Jlynn]

Hi Everyone,
I lost my beautiful little brother on September 12, 2017. He was 47 years old with 2 young children. i knew I would miss his presence but never imagined this much. I knew what the outcome of ALS was yet still feel so unprepared.
My mind keeps going back to those last few weeks. He would go through phases where he would feel really bad we would all think it was the end and then he'd rally one more time. I thought he would this time too. He died on a Tuesday. The Saturday before there was an Oklahoma University football game on. He told me that this would be the last game he would ever watch of his beloved Sooners. He took no morphine that day so that he could stay awake. He watched his team win that game. From then on he was "actively dying".
I had been sleeping in a recliner and then a blow up mattress just outside his door for several nights in case he needed me as he could no longer push his help button. That Monday night I left the light on in his room so I could see him breathing. I woke up every 2 hours to administer his meds. His next dose was due at 2:15 a.m. I woke up at 1:15. He was still breathing. I went back to my blowup mattress and woke up again at 2:05 a.m. He was not breathing. Why didn't I just sit with him? I so regret going back to sleep. Although I was right outside his door and told him I would be I regret not being there to hold his hand for his last breath.
I miss him terribly. This big house feels so quiet without him. I needed to come here to this place(the forum) that helpedme so much through this journey. I needed to purge a bit to people who really understand. Thanks for listening and I'll try to check back soon. You all take care. Jlynn

 

[adrivtham]

Jlynn,
Reading your post made me cry, I do too think of all the things I should have done. I should have taken a family leave to be with my sweetheart, but I didn't. The only thing that helps me is to think he is no suffering and someday we will meet again.
Many hugs to you. And I agree I come here too because I feel that in this place people can understand me.

 

[scaredwifetx]

Flynn, I am so very sorry for the pain you are going through. Reading your post made me cry but it asks made me realize how much everyone here really cares. Our journeys with ALS are very different but we all understand the grief this disease causes. I try to remember all the good times and how grateful I am to have had them. Knowing that the PALS are and will be free and no longer wear the chains of ALS gives me some peace. It's so hard on the ones they leave behind. My thoughts are with you and I send you many hugs.

 

[affected]

I don't know if this will help as when you fee something emotionally, logic doesn't always change how you feel.

It is very common that a person will die the moment everyone step out of the room. You could have stayed with him, and then just gone to the loo and he may have passed.

I do believe that Mike knew you were with him, even if you were not right beside him at that last moment, you were with him til the end.

All the things you are feeling, including these flashbacks and 'if onlys' are truly a perfectly normal part of grieving. I appreciated someone saying once - your grief will reflect the depth of love you had for the person.

So it hurts so bad because you truly loved your brother. If you can grab hold of that I hope it can bring you a little comfort as you grieve.

I think it's a blessing we don't know what it will be like before they pass, we have to just be in that moment when we are a CALS. Now we have to grieve, and it's awful.

You will go over and over this until you reconcile yourself with it. That's totally crap I know, but it's a part of how grief works. Many gentle, understanding hugs to you my friend.

 

[sunandsea]

Jlynn,
I'm so sorry and I understand. I agree - I never knew it would be this hard or hurt this much. I am clinging to the promise that it will get better. I hope that you soon feel peace and can remember good times with your brother. He was so, so fortunate to have your love and care and I'm sure he knew you were nearby to the very end.
Hugs, Judy

 

[lgelb]

Jlynn,
Feel no guilt. He felt free to let go because he knew you were there in spirit [and for some PALS that is easier than by the bed], and how much he was loved.

Best,
Laurie

 

[affected]

It's easy to say 'feel no guilt' but it's actually a part of the grieving we go through. We have to process so much, so very much and we feel guilty, but if we do face our grief and go through all it throws at us, we can come to a place of realising that we don't have anything to feel guilty about.

 

[Lkaibel]

I am so sorry about your brother. Wishing you peace.

 

[Jlynn]

Thank you all for your kind and helpful words. Listening to you all and being on this forum actually makes me feel closer to Mike. He never came here but he knew I did as I used a lot of the ideas and information in making his life just a bit easier. After he passedI found on his new computer 3 pictures of Mikes tree from " Tillies Trees" (the name tag, tree and a koala) that he had saved. It warmed my heart to see that they had meant enough to him to save yet he never said a word.
I wonder...is it normal to hope to find something from him. A hidden note...some letter on his laptop? Going through his things I keep hoping to find something. I'm not sure why.
It's odd how we all know what the end result of this horrible disease will be yet I still find that I was not prepared for this ache in my heart. It's the missing. I am however very grateful that he is no longer suffering. He liked to dance. He said his dance moves were illegal in several states. I pray he's dancing in heaven. I feel love in my heart for all of you here. Thank you.

 

[Narrowminded]

Jlynn - sending huge hugs your way. I can't totally relate yet to what you are going through, but giving support is something anyone can do. I do know what you suffered before hand and to that I can totally relate. You were a fantastic caregiver to Mike and he knew that. I'm sure he loved you more than most siblings for everything you did for him. Try to let go of the guilt as you are ready, because from this perspective you have no guilt.

I have been told that some like to go with people there and others wait for them to leave. Something none of us will ever know.

Hugs and peace to you,

Sue

 

[affected]

Anything you feel is normal really. Grief takes so very many different forms and they are all a part of letting go of someone we don't want to lose. As long as you don't become obsessed with finding some note from him (which I did not think is what you are saying is happening), then yes it's normal xxx

Thank you for telling me you found pictures of his tree, I can't tell you how it feels to know that I may have made some moments brighter for him.

 

[Neilswife]

I am so sorry for your loss. I can tell how much you loved your brother. I think it is very normal to hope for something hidden from your brother. In this way, you would be hearing something from him after he was gone. Please do not be disappointed though if you do not find anything new from him. Hold on to all the things that you do find -- it might be something as simple as a special shirt which is tied to a special day you shared together, you never know what will trigger a special memory for you -- those are things to hold on to.

I think it is also normal to wish you had done something different. I think we all have something like that we must come to terms with when someone we love passes. Grief and guilt are often tied together. We wish we had been perfect people when we were living in the midst of ALS. We must wrestle with all these things until we find peace and that is part of being able to move past these things and part of grief. Take care

 

[Buckhorn]

Jlynn, I am so very sorry for the loss of your brother. He was so young, and leaving behind 2 young children (& probably many others who loved him) is truly tragic. You were a wonderful caregiver for your brother & I am absolutely sure that he felt your love - always! I am sorry for the pain you are experiencing. It is absolutely "normal" for you to replay things in your head and second guess yourself; you will most likely experience many emotions - let them come. I think that is one of the many ways we humans process grief or loss. It is part of the process most of us experience. Allow yourself to feel whatever you need to feel.

You have gotten wonderful advice from those above. Blessings to you & wishing you eventual peace.