Grandma fell on Monday. She said she was expecting it. Well, it has been a couple of weeks. It seems her pattern is either Monday or Tuesday in the early morning. Well, that’s just what we know.
You know, I didn’t think I’d have this much of a connection with her. I am genuinely scared. Why didn’t I think I’d have a connection? Because I was never really close with her. But now that I am, it’s making a difference. We spend a lot of time together, with me feeding her and all (Mom takes the morning shift, I take the afternoon and evening. I’m not up in the morning when Mom and Grandma are).
I don’t know how long she’s going to last. She’s been saying she doesn’t know how long she’s going to be around for, and that this is no way to live. She also says she doesn’t know what she wants because her mind won’t stop, it won’t allow her to think. The connection between the brain and the body is definitely disconnecting. Mom and I have noticed a change, but we don’t know exactly where the change happened. It could have been after this last fall.
“When can I eat?” she asked tonight. She has asked this question multiple times before, but tonight, I just looked at her. It isn’t her fault that she doesn’t understand that she won’t be able to eat. Her mind is fine, her body is fine, but the connection is not. It’s not her fault, it’s the disease’s. That’s what happens with ALS, the connection to the whole body dies, slowly, and we can see it. She doesn’t understand because her mind doesn’t know what her body is trying to tell her. I think she knows that, but she can’t act on it because she only knows it in her mind, and not in her body. She can’t control the connection, she can’t make it come back together. No wonder she doesn’t know how long she’s going to be around for. No wonder she doesn’t want to keep on living. She knows the connection is gone, but she knows she can’t help it, and that her mind won’t let her think about that, because it can’t. It doesn’t know.
I wonder if it’s possible for other people, people younger than 85, to be able to grasp this concept. I wonder if they can train their brain to understand that there is no connection. I wonder if it’s just because Grandma is old, that she asks these questions often. Mom went to a support group and she talked to other people with ALS. The one thing she gathered from talking to them, and talking to Grandma, is that these other people have had time to prepare. Grandma has had this for two years (since 2011), and here, at the most crucial part of this disease, she now knows what she has been living with. Other people, in their 40’s and 50’s, know what is going to come. Grandma had no idea. I wonder if that is another reason for the way she is.
Still, we may have a while to figure these things out. Grandma still gets up every day and tries. She still gets up and talks to us, as much as she can, and as much as we can understand her. I do hope that we have a while before this ends, there’s still so much that I want to learn.
But for now, this is all I have. Until next time.