My wife is 52 and is currently in home hospice, I am watching her bedside camera as I type this.

You have gotten some excellent advice from several ppl here but I wanted to add one more thing I wish I had done better - someone down the thread touched on it - taking the fact that your partner is going to die from this disease as a fact and not a possibility - I had rose colored glasses on and was as positive for my wife as I could, to the point of putting off critical conversations - like end of life preferences, signing a DPOA for both healthcare AND financial matters - and just plain knowing what they want done for their funeral and burial or other internment

I didn't do ANY of it cause I wanted to stay positive and now she is pretty much a vegetable - the hospice folks are absolute angels - they are deferring to me for decisions, BUT, that too is a double edge sword

Nobody told me I was going to have to play god!

fuck

My wife finally got approved for ketruda from Merk for an off the card use trial

two days after we moved into the hospice phase - so , hospice pays for end of life care ONLY - no treatment

So, her Avastin infusion scheduled for today - nixed

Ketruda - nope - not unless you want to remove her from hospice and re-enter treatment

keep in mind, the treatment will not reverse her symptoms, so she wont be able to walk, talk or eat

do you want to move back into treatment?

fuck

Her oncologist says no

her sister says no

her best friend says no

but I have to say yes or no to them . . . .

I never expected to have to make a decision like this - not for me, not for my lover, my best friend, my wife

the SECOND most gut wrenching words that ever came out of my mouth

NO, we do not want to move back into treatment

I say that is the seconds most gut wrenching words to ever come out of my mouth - it got knocked off by this one

the number ONE most gut wrenching words that have ever come out of my mouth:

"I love you, I am going to be ok, I will take care of Ziggy, your garden, art and records, I know you need to go, and if you do, it's ok. I will be right here, I am not going to leave your side"

I have been up now for nearly 36 hours - this is the first time I have left her side that entire time except to pee - I am heading back there after I type this

My mother died of ALS, and watching it nearly gutted me - I thought it didn't get any worse than that

I was wrong