I will preface this by saying this was our experience:
Towards the end, my dad was feeling increased pain, though we didn't have any idea of the intensity. He expressed it as being really uncomfortable and he seemed more impatient. He was using fentanol (sp?) patches and oxycodone while at home. When he came down with an infection and needed to be hospitalized, it was there that we realized it was only a matter of days. He was in a lot of pain, so I had him placed on round the clock morphine drip. He was much more comfortable, and his agitation was gone. In retrospect, I wish I had pushed for more pain meds earlier. I remember my cousin telling me (she had lost her husband to cancer) "Morphine is a cancer patient's best friend." I saw through dad's behavior that it was true...in our situation.
As for my siblings...my parents and I made legal arrangements (health care directives, Power of Attorney, etc) when dad was initially diagnosed. Both my parents named me as their SOLE representative. (Mom was diagnosed with advanced Parkinson's Dis. 5 months before dad's diagnosis). They also made it very clear to my siblings that this was their decision and their desire. I do keep my brothers informed with everything that goes on, and, naturally, get their opinion on different things, but ultimately I made/make the decision. I spend a lot of time daily with my parents...with my mom, now...and we talked about everything, therefore I was prepared to follow through with their directives.
The hard part, then, is I am left alone to provide the round the clock care. One of my brothers who really wants to be here to help me and my mom, lives in Florida. One of my brothers has MR/cerebral palsy. My youngest brother doesn't seem to want to be bothered>he lives an hour away. Oh well.
You are doing an amazing job, with all the challenges thrown at you. One piece of advice...make sure to take a few minutes (more if you can) to breathe. To do something for yourself...a cup of coffee on the front porch, play with the pet, garden, lose yourself in a goofy sitcom (mine was Frasier)...do something for you! Advocate for the advocate! As you know, the road ahead will be very bumpy...
As with all the patients, caregivers, survivors on this amazing site, I will keep you and your family in my prayers. You will find the greatest allies on this site.
Peace be with you,
"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain." ~g. b. hinckley