How about a forum for friends and family? There must be others who have questions about how best to support those we love. And there must be things you want to tell us, too.
I found this list on a newspaper advice column and have just listed the high points;
Don't assume that because I look well, I feel well.
Don't say, "I know how you feel.'
Don't tell me about someone else and how well they coped. I'm doing the best I can.
Don't tell me, "It could be worse" I don't need reminding
Don't decide what I am capable of doing. Allow me to make those decisions.
Don't be upset that you cannot ease my problems. It won't do any good for both of us to be miserable.
Don't ask me how I feel unless you really want to know.
Don't assume that because I did a certain activity yesterday, I can do it today.
Don't tell me about the latest fad cure.
Do realize that I am angry and frustrated with the disease, not with you.
Do let me know you are available to help me when I ask.
Do offer me lots of encouragement.
Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel.
Do continue to invite me to activities. Just because I'm not able to ride bike along with the gang, doesn't mean I can't join you for the picnic at the end of the trail. Please let me decide.