Along with this UTI, is the possibility that ALS has progressed. ALS seems to have these moments of steep decline and then months of plateau. I'm sure ALS is in him, chipping away at his body and his brain but it goes unnoticed until BAM! Something happens that feels so shocking. Two months ago it was the fact he wasn't going to get out of bed anymore because losing his core muscles put too much pain/pressure on his diaphragm.
<----- Happier days at Disney - 3 years ago
It's hard to tell if what he's feeling is ALS progression because of the UTI. But the last 10 days have been rough. Panic attacks, agitation, he can't get comfortable. My happy go lucky husband is, as he said "more sickly" than he's ever felt. He says it's not a breathing issue. My guess is he can't say the truth of what it is. Especially to me.
If it's a breathing issue, it's too scary. So he won't say it. He's opted for no intervention. Non-invasive intervention would be a bi-pap. Invasive would be a tracheostomy/vent. He's decided he wants neither. I can't imagine not choosing something like the bi-pap to get air in to your lungs. But he says no. So it's been a week of more panic attacks, lots of distress, more drugs. He cannot get comfortable unless he's asleep. Even with more drugs, he is agitated. That could be the UTI -- his perception of his body in relation to his space is way off.
It was a year ago we were here, thinking he had days to live. We went from being at home, to VA palliative care to here, at the nursing home. We got through that.
This feels a bit different. A year of ALS chipping away. The panic attacks, the distress, weak voice, jumbled words.
Last weekend, he said he can't live like this. It's the only time he's ever, ever said it. I haven't brought it up again but the statement is out there, looming over us. It was an awful night. Knowing I had to say it's ok to feel that way when really I just wanted to scream at him to never ever leave me. But I just whispered it's ok, it's ok to say it, I'll be ok, you'll always be with me.
He's asleep right now. He got morphine two hours ago because he couldn't talk and breathe at the same time. He'd been awake for a while with doctors prodding at him, aides cleaning him up, the pastor stopped by on her regular visit. It was too much.
It doesn't feel like this is ok.
Much love for you both...
ReplyDeleteThanks, Jenn.
DeleteGood on you, saying it was okay to not want to live like this even when you wanted to yell don't leave me. That is love, real love.
ReplyDeleteI don't understand on the bi-pap either, but I guess it's not ours to understand. I love your respect for Ed.
It is so hard to put one foot in front of the other while your heart breaks. Love, faith, keeps me at it in our end of this wretched disease and I wish you all the strength, love and light in the world.
Thanks, Lenore. I think so much of you and Brian. Sending both of you much love.
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