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[DarkVQ]

I’m currently in this limbo between life and death. My boyfriend of almost 2 years had a devastating hemorrhagic stroke almost 2 weeks ago.  Since then he has been on life support and unresponsive. We are in a long distance relationship so I can’t be there.  The border is closed and I have no way to get to Texas. I’ve been praying and hoping and trying to stay positive until yesterday when his sister gave a real update to his condition. There is nothing that they can do medically, he will not wake up to have any sort of meaningful life.  Even if that were still a possibility, his kidneys are failing and he is not a candidate for dialysis.
 

I’m broken.  I know I won’t be able to say goodbye, not really. I’m heartbroken for his family and his young son. I don’t know how to be and I feel guilty grieving because he is still alive. I’ve had this sick feeling in my stomach since it happened. I can’t eat, can’t sleep. I have my own kids that I need to be healthy for. 

[KayC]

I am so sorry.  I assume he's not a candidate for kidney donation either since w/o dialysis he wouldn't last long enough to get one?  You are going through anticipatory grief even now, the loss of your hopes and dreams as well as the loss of him in your life.  I don't know your beliefs but it has helped me to know I will be with my husband again.  

[foreverhis]

12 hours ago, DarkVQ said:

I don’t know how to be and I feel guilty grieving because he is still alive.

Welcome.  I'm so sorry you have to be here with us, but you have found a caring community that will help you however we can.

I want to tell you that what you are feeling now actually has a name.  It's called pre-grief.  I know it well.  Please try not to feel guilty for it.  I can only imagine how much harder it is for you now, not being able to be with him.  COVID-19 has made devastating losses that much harder.  My heart hurts for you and for him.  Try to remember that the love you share is a strong thread that distance cannot break.  What you are feeling is the anticipatory grief of remembering not just your time together, but losing the future you planned and should have had.  There is nothing fair or right about it.

My sister-in-law, a caregiver's support group leader, helped me understand pre-grief when it started to become clear that my husband was not going to make it to the next treatment for his bladder cancer.  How, we wonder, can we be grieving for someone who is still alive?  It's one of the most confusing parts of the grief journey, at least in my experience.  He was still there with me by his side.  He talked, he even smiled his little impish grin sometimes, he fought hard and wouldn't give up because of me and our girls.  Yet even as I kept fighting to help him get better, I felt the loss of him begin weeks before he took his final breath with me by his side.  That moment haunts me because it was the dividing line of "before" and "after" into which I separate my life now.

It only adds to your pain to know that you will not be allowed to be there for him.  Do you think his sister would put you on speakerphone so that he could hear your voice?  The doctors and researchers say that hearing is the last sense we keep.  I don't know if it's true, but I believe it is.  I believe that my love needed to hear from both me and our daughter that it was okay to stop fighting, even though by then he was not really responding.  But regardless of anything else, it would help you to be able to say what is in your heart.

Yes, you absolutely must take care of yourself, both for your own sake and that of your kids.  Try things that are easy to get down and easy to digest like smoothies or soups.  If necessary, try sleep aids, either OTC or prescription, whichever is appropriate.  Talk to your doctor and ask for advice.  Allow yourself to show your grief to your kids.  IMO, it's important for children to not be completely sheltered from life's challenges.  Let them know what is happening at a level that is appropriate for their ages.  Let them comfort you as you comfort them. 

Please come here as often as you want to talk, to question, to just rant if that's what you need to do.  We will be here always.

 

[DarkVQ]

He is not a candidate for a transplant. Truthfully, it’s only one of the issues. There is nothing that can be done medically short of a miracle I guess.   
 

I recorded a message for him that his sister will play but it was recorded before she gave me the most recent update. Up until this point she was just telling me as little as possible while focusing on positives. I think I’ll record another for him Although it feels inauthentic when I think about an audience.  I’m somewhat afraid of saying something that will offend his very religious family.  I’m not sure what choices his family is going to make and I don’t feel like it’s my place to give an opinion. 
 

thank you both for your responses.  I’m feeling a little numb at the moment but I do intend to take your advice to heart. 

[KayC]

I'm so sorry, continue to vent as you are able, pretty much anything one can feel is normal, this is a journey none of us wished to take but we're here for each other.