Excellent! You'll feel a lot better personally at least once you've met the team. You need to bolster your own supports if you're going to be his primary at home.
About losing the relationship and turning into the carer....it's not like that usually. It feels sometimes like that a bit maybe but I don't think you have to worry about that. You love him. That will hold and actually make you stronger and able to better handle a lot of this. Same for him.
When things happen suddenly like this, the news I mean, and so much moves fast in medicine during times like this, it's normal to have endless questions. I remember feelling like I was on sand the whole time, never solid ground. But that was because of the disease, more than the people. So I guess consider that preparing for that feeling and it being a bit of normal most of the time might alleviate some of the panic and stress for both of you.
Take a deep breath and slow or stop when something starts - the panic, more news, more decisions, his parents in shock or a sudden crying fearful episode - be a calm center. And to do that I found it helpful to keep telling myself that I don't know anymore than they do and we all just have to hold onto each other and be strong and solid for each other. You will feel like you're failing occasionally maybe. That's normal if you do. You're not failing. Just remember and tell yourself "I don't know" - all you can do is breathe, help them remember to breathe calmly, hold their hand, skin to skin contact is important sometimes for calm, a gentle hug, and so on.
All you can do is the best you can, both of you. I believe you both will. You're very on top of this in both emotions and getting organized. And if there is anyone close who is not supportive of you and your decisions to care for him, just avoid those people and try to keep them at bay. Enlist others to help with that if necessary. You need strong safe supports now. It doesn't matter what the world thinks. It only matters what you think and you sound very dedicated and loving to me.
There are a lot of other really experienced and wise people here, several professionals who post here. I'm waiting for them to show up :-) They will. Don't worry, you will have lots of great supports here and use us in tandem with the team at hospital, community supports - whatever you need, use it if it's there and offered. It will make this better for both of you.
Sending good thoughts.
Carlyn