Dear Carol,
i COMPLETELY understand what you are talking about!!!! i hear the same things all the time...no one really knows what you are going through unless they visit you at your home and see it first hand. even my family has said "come for dinner...it is ok if he has to lay down and rest" they didnt get it (at first) that traveling meant bringing cans of food, bottled water, gatorade, tussin syrup and other meds...never mind the fact that he is on so many meds that sleeping and going for rad everyday was about all he could handle.
i too as a caregiver have felt frustrated and isolated. friends that i thought were the closest havent been there for me. perhaps they dont know what to say or do so i forgive them for that. i am very thankful that we belong to a community of craftsmen (we are potters) that have been very supportive in every way imagineable.
we will get through this and we need to light our own path.
be well.
~meesh