That’s a medical term. Basically, it means a softening of brain tissue following a brain injury like a baseball bat to the head … or a stroke. Guess how I learned that new medical term? There isn’t much information available but from what I read it can be not a big deal. Unless you’ve had two strokes and a mini-stroke and have been kind of up and down physically lately. Then it might mean that you will always be kind of up and down physically (and cognitively) and it looks more and more like even if you do get to go home, you’ll always have to have someone with you. Then ecephalobrainfuckitis would suck.
Remember when I said people have accused me of being too emotional? Those people are about to get a whole lot of ammunition. Use it wisely, fuckers.
Let me back up. Yesterday we had a family meeting with the therapists and social workers. MoC isn’t where she should be in order to be able to go home. While she is still improving, she has stalled out considering the strides she had been making. Then she kept feeling weak and tired, which we could never pinpoint a cause. MoC isn’t a whiner and she isn’t a quitter and she isn’t a liar, so I know that whatever was going on was not an excuse.
My mother is 74 years old and not in tip-top shape to begin with. She has lung issues, hypertension, diabetes and a stubborn streak. If she hadn’t been in the hospital when she had the first two strokes, she would have died. I don’t have the slightest doubt about that. It’s the only reason I don’t kick that moronic doctor in the nuts. If he hadn’t (finally) admitted her due to the headaches, I would not be writing this post.
But … I am not prepared for this. For five months I have been telling myself and telling her that she would be able to go home. I knew that’s where she wanted to be. I also know that she is at high risk for another stroke – and that the next one will probably kill her. If she wanted to be home, then I was going to do my damnedest to make sure she got there. I ignored my sisters because they weren’t here and didn’t see her every day like I did. I ignored the moronic doctor because he’s a moron. I did my level best to be positive and keep hope alive. MMB came in Sunday night. Last night she brought up some concerns about how we would pay for the long-term care that MoC was going to need. So I told her that if MoC could build up her stamina and master her walker, she wouldn’t even need long-term care. It’s what I’ve told myself since October. And MMB said, “That’s not what they just said.”
So I replayed the meeting in my head. And I heard the social worker talking about care options. I heard the speech therapist saying that she’s never had to give someone so many treatments (it’s an electrode thingie to help stimulate the muscles in her throat to help her swallow) and still show limited progress. I heard the physical therapist saying MoC could only stand for about 3 minutes and that her longest walk had been 90 feet.
I had to write a paper last night, so I did what I always do. I put it out of my head. Today we had a meeting with the physical therapist so she could show us how to help MoC. After the therapist left, MoC was talking about a friend of MMB’s who lives in a group home in Washington. She said she and MMB had been talking and MoC thought something like that would be okay for her.
And the defenses I’ve built up for myself and the lies I’ve told myself fell apart on my way home.
I don’t want this for her. If she’s okay with it, I get it and it’s fine, but it’s not what I want for her. I want my mom back.
I’ve never really talked about it here, but my father had bone cancer. He wasn’t a big man, but he was freakishly strong. He working on some project that I’ve forgotten and accidentally Super-glued his fingers together. He cut them apart with a knife. Once he got so pissed off that he couldn’t find a current phone book that he ripped the phone book in half – a metropolitan phone book that was about 3 inches thick. I watched him waste away to about 120 lbs. I was there when he told my brother-in-law that he didn’t want a hug because he was afraid it would break his ribs. I was at the doctor’s office with him when he was sitting in a wheelchair crying because he was in so much pain and I listened to my mother beg the nurse to find an exam room so he could lay down.
It’s not the same thing with my mother – it’s actually worse. And I can’t watch it happen again.