When you ask an Alzheimer's caregiver how they are doing and how is the person for which they are caring, you might find yourself thinking that you've heard certain phrases before.
You'll hear things like "Our new normal is..." or "I think he's transitioning again..." You may hear litanies of skills lost, changed preferences, and new behaviors. You'll hear of accommodations made, appointments kept and doctor's advice. You'll realize, if you stick around long enough or ask frequently enough that there seems to be a pattern and some of these phrases are trotted out more than once.
You'd be right.
The fact of the matter is Alzheimer's seems to be a cyclical disease. The decline comes in fits and sprouts. The process is slow enough that we can measure and mark the changes. We have time to adjust and to accommodate the changes. We have time to put on the cloak of "our new normal" and wear it in public, presenting a face of acknowledgement if not outright acceptance. What other choice is there?
To rail against it when you ask would be a breach of social decorum. Oh, there are rants. They are reserved for those who understand. The curious colleague or community acquaintance is not to be subjected to a moment of venting. There's no specific rule that guides this; just the social conditioning that's endemic in our culture. Plus, we don't want to scare you off by revealing the frustrating and bleak moments that are part of the care giver's life
So, the care giver sits on their horse going up with the good days and going down with the not-so good days repeating the same circle as the music slowly winds down until they can finally get off the merry go round.