My Heart Is Breaking

[Jason's Dream]

I think Jason might be taking a turn for the worse. He has been requesting more and more pain meds. He missed church last Sunday (which he never does). His smile is gone, his face looks like he is in pain, his breathing is labored. I have given him pain meds (morphene / roxanol) 3 times in the last 4 hours and it doesn't seem to be taking his pain away. I have called the on-call nurse. I am scared... scratch that.. I am freaking out and having a hard time holding the tears back... I am soo scared of going to sleep right now.. afraid of waking up and he be gone. I'm not ready for this. I'll never be ready for any of this. I hate this soo incredibly much!

 

[Atsugi]

You've got me worried. Now I'm nervous. Is the nurse coming over?

 

[Jason's Dream]

No. She says to keep up with the morphene. I've been giving him that, and the hydrocodone. He doesn't want the oxygen, but I can't help but worry at his labored breathing.

 

[Atsugi]

Doesn't want oxygen? If he objects to the mask, use a nasal cannula.

 

[epkennedy]

My thoughts & prayers are with you! Hugs

 

[AKjo]

Dear, dear Becca, You must be very scared tonight. I am so sorry about Jason's difficulties - wish there were magic words to make it all go away. I don't have any advice for you, but wanted to give you a virtual hug, and let you know I'm thinking of you and Jason and your little ones. You are not alone.

Blessings, Jo

 

[Danijela]

So sorry you are going through this. Has he got bipap? That would help with laboured breathing. Oxygen (if he can not exhale and push out CO2) will just suffocate him more. It is only given as comfort measure in the final stages, or it can be 'bled' into his bipap mask. Thinking of you. Dani

 

[Jellycat]

No words of advice just prayers for you both. Thinking of you.

 

[Jason's Dream]

Thank you dear friends. So grateful for this place of refuge to come and vent, and lean upon each other when we are scared, hurt, angry, etc..

All we have is nasal canuli, as they have prescribed him at 2 liters and mask would need 5 liters or more. But he didn't want that. He hasn't wanted the Bi-Pap either. He finally fell asleep and he is still breathing, I can see his chest rising. No sleep for the weary though.. so scared to wake up and him be gone. I feel there will be many sleepless nights ahead of me. Not sure I am strong enough for all of this..my heart hurts soo.

 

[asantiago]

I hate this for you. I hate ALS and the devastation it brings. You are an amazing wife and he is so lucky to have you. May God bring you the strength to get through this. HUGS!

 

[dian_na]

'm sorry your having to go thru this. If your not ready lighten up on the morphine.

 

[Pepper]

The night before he went, my husband refused all breathing treatment and went in his sleep. It hurts when he went but what haunts me after he went is how much he suffered the last two weeks. It haunts me so much. Though it hurts, I am glad he went when he did before he had to suffer even more. The last week especially haunts me.

 

[cervus]

I'm sorry you're going through this now. Sounds like you're doing everything you can. Our thoughts are with you.

 

[notme]

Oh sweetheart, i'm so sorry you're having to deal with this. As Mike suggested, try a nasal cannula if you have one. If the morphine isn't working, perhaps they need to increase the dosage or the administration method. Is he getting shots or pills or via tube? Some people don't do well with morphine and need a different narcotic (especially if he'd ever had it before and has built up a tolerance to it)

The hospice nurse SHOULD be comping to make him more comfortable-that is her job. I wish I could help

At the risk of irritating a member--certainly don't withhold the morphine, as it should help with any air hunger--if it's not, please call and let the nurse know that.

 

[rcharlton]

My head is breaking for you.

Wishing you strength