Today's Visit-A Downward Progression on the FAST Scale

I’m definitely seeing downward progression in Bill. Each week, he communicates less and less, replaced by more and more repetitive speech. Mostly, it’s “Help me, please help me.” The nurses say he does this constantly now. When I stop him and ask, “Bill, tell me what’s wrong,” he just says, “I don’t know.” Sometimes, he’ll start saying it in the middle of a sentence, as if his mind is stuck in a loop. If I distract him with a photo of the kids or Oreo, he’ll smile—but then, almost immediately, he returns to the refrain: “Help me, help me.” He even says it while they feed him. It’s relentless.

The changes in him are stark. He can no longer stand or walk. He tilts his head like it’s difficult to hold up. And now, this loss of meaningful language—it all points to him progressing toward Stage 7 on the FAST (Functional Assessment Staging Test) scale for Alzheimer’s. I had to look it up again. This is the scale used to determine treatment plans for Alzheimer’s patients. Once they reach Stage 7, they qualify for hospice care. This stage can last anywhere from six months to two and a half years, depending on other health conditions. Since Bill is otherwise relatively healthy, he may stay in this stage on the longer side.

When he does speak, he asks to go on a ride. He wants to be in a car, to go somewhere—anywhere. And I so badly want to take him. But I can’t. I can’t get him in and out of the car by myself. If he needs the bathroom, he requires a lift to help him up. He wears incontinence pants, but until recently, he still wanted to try using the toilet. However, I haven’t heard him ask to go on my last two visits, which is unusual in itself. He was asking to go every 10-15 minutes.

The thought that he may never go on a ride again makes me so sad. I need to see if I can make it happen, even just once more. Maybe I can hire a caregiver to go with me, even if it’s for just 30 minutes. I’m going to look into it.

Today was another rough day. And I know it’s only going to get harder. So if I call you up just to cry for a bit—thank you for listening. I’ve done that to my kids and several friends. Please know that it helps. And I’m grateful to you for listening. That's all I need, is for someone to listen. 

The FAST Scale: