Many times, I have no idea what to say. Same stuff, different day. A lot of times the conversation spirals out of control, looping from one thought to the next. I give him credit for keeping me reigned in (at times).
Last Tuesday, he felt like I was the most coherent I've ever been. Hmmm. Wait - let me rephrase! I was talking in a more linear way. My thoughts seemed more put together. I don't think I'm suddenly this organized thinker! What changed? I wrote in this blog before therapy. I figured I'd give it another whirl and see if it helps.
Luther's in a ton of pain. 9 out of 10. It runs from his bony butt down his thigh in to his calf. I always say it's the ALS. Of course he's in pain. All his muscles, his padding is gone. So his bone must push against his skin, his nerves.
We made an appointment to see his doctor. It was interesting because the physical therapist thinks he aggravated it somehow. In my layperson's brain I was thinking, umm yeah. He's sick. ALS aggravated it. The way she described it though, made sense. Like anyone with a muscle/nerve injury, you have to work on it. Stretch it, massage it, ice it.
So we'll step up that stuff. I don't mind rubbing on my husband at all :) especially if it makes him feel better.
His doctor doctor (not physical therapist) put him on morphine. It's slightly worrisome because it's such a strong narcotic. She said eventually he'll get used to this level and he'll need to up it. My feeling is we'll worry about that when the time comes.
He took the morphine when we got home and man, was he happy. He had this floppy grin most of the day, which was great to see.
He lost five pounds this past month. That isn't good. When I met Luther, he weighed around 220. He's down to 178. My tall, skinny guy. I have to up the massages and now, I have to up the tube feedings to get additional calories.
So what will I talk about in therapy tomorrow? This doesn't feel like it's helped clarify much.
I just typed a whole bunch of stuff that was even less clear so I deleted it. It's late. Luther's rolling around in his bed - time to check on him,
At times, my heart bursts with how much I love him. I get scared of how powerful that feels. Maybe it's just being scared of the thought of losing him. People have said to me, we all die, I could get hit by a bus tomorrow. Yep. True. The difference is we all KNOW Luther is dying. He wastes away in front of my eyes. He's in pain. Our lives have fundamentally changed because of ALS.
Awkward segue because I don't know what else to say: the picture above is a lyric from "Beautiful Day" by U2. I first saw this band over 30 years ago in a small theater here in Minneapolis. This weekend, Luther, my sister and I are driving to Chicago to see them again. How fun is that?
No comments:
Post a Comment