It is really hard...
 

..hard to advocate for someone who intermittently understands/remembers the situation and details. Medical folk assume so much. If they knew how jumbled things get....
And they themselves all seem to drop the information ball in one way or the other.
It just seems that after doing their line of work so long they have lost some of the attention to detail/importance of what their charge is.
I really fear for folks who have any cognitive issues and no advocate..

Rich,

You are a wonderful son. God is going to send you a blessing for taking care of your mother.

Amelia

You are so right, Rich. As much as I try to be my own advocate, I have found myself compromised by "chemo brain", cognitive issues and sometimes just generalized fear .
Thank God for people like you in our lives.

Rich said: "I really fear for folks who have any cognitive issues and no advocate.."

Me too! Not just for medical decisions either, and not just for seriously impaired people. For example, I cannot imagine how frail and sick people manage to sort out the insurance hassles - and there are always insurance hassles.

Another issue that's becoming more frequent, as we get more and more oral chemo agents, is adherence to complex regimens of how much, when, and with what. It's got to be a challenge, even for those who are fully-functioning.

Granted, it's not easy sometimes to get a frail, sick, or demented person to an appointment for treatment. But to keep them on track with their oral meds on a daily (or hourly) basis is practically a fulltime job in itself. And this is of course not a breast-cancer-specific problem.

Rich, I don't know the answers, for those who do not have an advocate in the family or support network. I suspect that in the end, it would be worth it financially for providers and insurance companies to provide at least some basic advocacy/ombudsman services to those who need assistance. But for them to do that, I think it would have to either be a legislative mandate or there would have to be good evidence that it wouldn't cost them extra money but rather would save them money (which it probably would). They're not going to do it out of the goodness of their hearts, or because it's the right thing to do.

Debbie Laxague

how right you are