#1 Absolutely go to Brilliantcaregiver.com.
2. Find someone to talk to and TALK. Do not isolate. Own what you are feeling – you will find you are not alone.
3. Listen to what the patient says – they know better what is going on with their bodies than the doctors. It is called Medical "Practice" for a reason and doctors are usually just making their best guess…which is good but not absolute.
4. Do all your legal paperwork and have all the difficult talks asap. If you don’t need it great. Talk about your own preferences as well. Make sure everything is written down and understood by the family. It is horrible to have to deal with disputes on top of everything else when the end comes.
Hope that helps.
Every day we decide who we will be by the actions we take.