functional assessment staging

Functional assessment staging (FAST)--that's a mouthful. Apparently, there are seven stages to Alzheimer's, and within these stages there are several levels of functional decline. I find out today that Mom's mind and body are somewhere within the seventh and final stage, what is known as "very severe cognitive decline." That she has had several strokes makes a precise determination difficult, as some functional decline is due to her strokes, irrespective of her dementia.

I am aghast. For these last months I've been operating under the assumption that Mom is a "moderate" dementia victim--somewhere between kind of okay and really not okay at all. I find out about this because I ask Mom's doctor and care manager for their advice regarding Mom's potential participation in an Alzheimer's study at U of Cal, something my cousin forwarded for my consideration. Their answer is not what I expected. There really isn't much time.

Today is Mom's last day of full Medicare coverage. Now we are on our own. She's still here, at the Mirabella, but there's no more therapy, no more motivational talks where we can say--"You need to work hard with the therapists Mom so you can get better and go home." There is no "home" other than where Mom is. There is no "getting better" as her team at the Mirabella have decided she had gotten as good as she's going to get. Mom is as she's going to be. And each day there will be less of her, as her diseases progress.

This insight takes the words right out of me. Makes language vanish. All that remains is an unspeakable grief.

When my cousin Paul comes to visit Mom around dinner time, we find things to laugh about. I'm working hard at "being myself," appearing "normal." Laughing is normal, at least for me pre-Mom's stoke. So I try. Mom tries too, but her attempts appear less than whole. I wait on every word, worried that she won't finish, can't finish. Her sentences, her thoughts just breathe there, taking up oxygen. "When we go..." or "I want to..." or "This is what..." just become preambles for ideas that can't be uttered. Each truncated sentence, thought, becomes proof for what I hadn't known but should have: "very severe cognitive decline."

I never imagined life as such a performance, Mom's and mine.

Deeply, a mother's daughter
--this is a lifewithmom--