Get to know their health providers
In the same line of thought, make sure to meet with and foster a relationship with the other health care providers of your loved one. Go with them to their appointments, and discuss the course of their disease with their doctors and nurses.
They may be able to teach you things about cystic fibrosis you may not know, and may have alternative perspectives which can help you take better care of your loved one. Plus, you will be able to stay on top of the course of their disease better.