Things are so weird. Not good. I want to be glass half full girl. I want to think things are going to be ok. I'm sitting here waiting for Ed to poop. This is our life. A 3 a.m. poop. Our life revolves around this now.
I'm supposed to be thinking about getting him on a bowel regimen program. This is where I'd be sticking something up his butt (my finger? A suppository?) at the same time each day so he'd just go and get it done. No more 3 a.m. worries.
Going to the bathroom now is about a 30 - 45 minute ordeal. We just don't have this thing down quite yet. The last time he went was Saturday and it was a MANUAL EXTRACTION. It was horrible and we both cried and I tried so hard to make it be like it was just another thing, no big deal.
Right now, at this very moment as he's going, it's a frustrating nightmare. Up, down, up down --- I don't want to stand next to him as he goes so I walk in to the other room but within minutes he needs me to do something. This is how my entire day is. Up, down, up, down...
OMG - so now it's 3:50 - we did the manual extraction again. Bowel regimen is looking better. The issue with this is you have to do it while lying in bed. I can't get him in to bed correctly. He's like a sack of potatoes I'm slinging around in this lift. Ugh.
Ok - let me back up. So you know he was in the VA so I could have a weekend off 2 weekends ago. This, for some reason, seemed to be the start of the next decline. Neither of us think it was the VA stay itself. The decline would have happened anyways. But it was the stress of going down there, of the lift system
I can't even write. I just cry. So is Ed. I'll just sum it up:
We started hospice Monday. Unclear how this helps us quite yet. It's only Wednesday. Well... now Thursday. So we'll see.
He can't get that junk out of his throat anymore. We use this thing nicknamed a "pickle" or an accapella. He breathes in to it then I do this "quad cough" thing - I press between his chest and his tummy to help him get the junk up. This can go on for the whole hour (on and off) before it comes up.
- Anxiety / panic attackes
Ed's anxiety is through the roof. He can't breathe, he can't move, he freaks himself out even though I'm right there. He wakes up in the middle of the night, feeling trapped as if he's in a coffin, getting no air.
- Passing out
I'm not sure where this comes from. The panic attacks? Lack of air? It's happened 4 times. It happened tonight. He'll call out my name, I go running to him. His eyes roll back in his head but eyes don't shut. His head falls to the side. His mouth goes slack.
The last time prior to this one, it lasted 30 seconds or so. I was slapping him across the face, screaming at him. He wouldn't wake up.
When he comes to, he doesn't remember it. He'll be very unfocused. The 3rd one happened on Monday afternoon and all day Tuesday he was so out of it. The nurse comes tomorrow and we'll discuss this with her.
In general, Ed seems to be less focused. He told me yesterday, he's having a hard time listening to me with the tv on. Or, if two people are having a conversation around us, he can't stay focused. Sometimes when he looks at me, he looks right through me. I'm not sure if I'm making more out of this than I should. It's just different and it feels scary.
- Breathing decisions
So these passing out incidents lead us to the talk about breathing decisions. Ed's "DNR" or do not resuscitate. But that's for those big moments, right? Like end of life, no quality of life times. Not now. Right????
He isn't using the breathing equipment he's supposed to be using. He doesn't have to. I think it's silly not to but I don't tell him this. It's his decision. But... what happens if he passes out, stops breathing or is gasping for air. Do I just sit and watch that happen? What are his wishes in those smaller moments??
When you read about ALS, everything tells you ALS isn't painful. This is WRONG. He is in more pain than ever. His knees hurt. His legs hurt. His feet hurt. His elbow hurts. His butt hurts.
He's on morphine as well as another opioid. Now the Ativan. Lately the pain bursts through the medication. Hospice will provide us a massage therapist. I've been stepping up the range of motion stuff.
This is getting hard. If I'm scared and sad, I can only imagine how he's feeling. And that's when I cry - when I see him hurting, scared, sad.