Dear Bizzy,
So sorry to hear your latest news. Tian gave you good advice. We can only do what we can, and what we have knowledge of. Give yourself credit for hanging in through the tough times - and bravo to you for surviving those times and yet still having some energy to devote to yourself...that is a good thing.
You are too hard on yourself. Your partner is lucky to have you in his corner. I do hope that you can relax tonight, knowing that sometimes we dont get enough information to do the best we can, but that despite the lack of knowledge you have done an excellent job of advocating and caregiving.
Systems fail, paperwork gets bogged down...someone dropped the ball and didnt give you the full story...that is hard to deal with. I totally understand your frustration.
But one person at a time, people like you are making a difference, and by speaking up about your own circumstance you pave the way for a better patient experience...and a better support experience for the family members.
Hang in there...thanks for writing and know you are being heard;)
sending a hug,
NatR