Thank you. For me, anyway, Mayo left off one of my top needs: information! I loathe getting patted on the head by doctors, or worse having what I am 100% positive is correct info poo-poohed because I don’t have a medical doctorate. Gimme the hard stuff, please—if I don’t understand, I’ll dig around until I get at least the gist. And being able to sling the lingo when talking to a provider has definitely gotten me more attention (if not always the good kind).

Yes, it is so important to just have an honest dialog with the doctor. We know the diagnosis and have the internet available to us.

I am planning to have a meeting with my mother’s nursing home in the next week or so to get an update on her progress medically and sign new end of life instructions. I just need to find out if my brother wants to come with me or if he would rather not do it. It’s hard for him and legally I don’t need him there so I leave that up to him.

So far they’ve been very honest about how she is doing and what to expect. She is not eating very well anymore and mostly repeats the same thing when we try to talk to her. They knew it was likely the not eating would happen so they put some weight on her by giving extra desserts when she was first admitted. They seem to really value my opinion and advice when it comes to struggles she has and don’t sugarcoat things when they give me info.