Hi everyone. My MIL (who lives with us) has a recent CAA diagnosis. We were giving some reading material by the doctor, but very little about the progression of the disease, other than the neuro's statement of "permanent and progressive." She was in rehab for a while but they sent her home with PT / OT but no follow-up for any of the brain / cognitive issues. (Not even a follow-up with neurology, which seems odd, but since they told us there is no treatment, maybe there is no need for repeated doctor visits?)

We are lobbying for speech / cognitive therapy services but at this point, it has been 7 weeks and we have yet to make any progress, so I am no longer optimistic that we're going to get help from that arena.

She has always been a difficult person but the dementia is definitely making it worse. She seems to alternate between being clear enough to argue with me about the facts of an incident that happened over a year ago, but then other times is so unclear that she is yelling at my husband for "forgetting" the pot roast at the store - which she never bought in the first place.

He seems to think that we should just play the waiting game and react when the next crisis happens but I am wondering if there is information available that could help us understand the progression of the disease, so we can have some sort of plan. I have done a lot of Googling but Dr. Google is unreliable and what I have gained mostly seems to be that there's no predictable pattern and every patient is different. (Which makes it a bit of a challenge trying to make a plan).

Any thoughts or guidance would be appreciated. Thanks.