My dear Sister2,
I don't know how much help I can be with your brothers complex conditions and his need for independence and control. But know my heart goes out to you; I understand what you are going through and I also think I understand where your brother is coming from.
It's difficult enough to get competent medical attention when one has insurance or the ability to pay for services. There are folkes on this site who are on medicade and SSI and getting outstanding care for their illness. But I sense your brother really doesn't want to fight his diseases; he is on a self destructive path with his drinking and there isn't any way to change his mind if he's not ready to take the first step.
And now that he is entering Hospice, he will not have access to specialists such as Hepatologists or Oncologists. They will treat his symptoms to control pain and naseua, etc. Pain medications are hard on a liver with cirrhosis; however he must be kept comfortable.
This is something I've thought about many times with my Gene. If and when his cancer spreads, he will get whatever pain relief he needs even if it hastens his death. For life without quality is not life.
Is your brother a religious person? I only ask because Hospice has Chaplains and social workers who will meet with him and or family members. It might be beneficial for him to takl with someone about his feelings, his wishes and what he wants help with and what he wants to handle on his own. If you are close enough to your brother, you may want to talk with him about everything.
Don't kick yourself because his ankles swelled from the sodium he was given in the hospital. Low sodium and low potassium are life threatening and the hospital did the best they could without prior medical information. Hospice will not be doing lab work as a rule.
Does your brother have encephalopathy from his cirrhosis? This would take the form of poor coordination, mental confusion, poor judgementslurred speech, flapping of his fingers or tremors and more. Symptoms resemble intoxication. It is not safe for him to drive under these circumstances just as it is dangerous to drive under the influence. And of course, pain medication also can affect ones driving. One of the difficulties is that when encephalopathy increases, he may not be aware of the extent and think it is safe to drive.
As long as hospice hasn't said a definite No to driving, there isn't much you can do but hope and pray that no body is injured or killed. At times when you know it isn't safe to drive, you may need to hide his keys or take a firm stand and work out alternate ways for him to get out and still have his independence.
I'm sorry I'm so long winded tonight.
My final word to you is to keep the lines of communication open with your brother; let him know how important he is to you and that you want what's best for him.
Hugs and prayers and positive energy,
Barb