"When I go to Respite Care nobody says I should do any of that."

You are the person being cared for, Claire, and therefore in some way the carers are being compensated. In short, they work on your behalf FOR YOU! Arranging for a friend or two to take you to a concert or music session or pizza place (I love anchovies so I mention pizza any chance I get) should be yours to do, and if you need help getting that done both caregivers and friends can do so without lotsa hassle.

Stick up for yourself. That ain't a right, it's a responsibility to all people everywhere. Seems you have a great start on that path.

Keep well and hang tough.