We're in Florida. Been here two weeks today. Settling in was weirdly difficult. At home, we have our routine, our equipment - a hospital bed, the lift chair, a roll over the toilet chair... So it's finding our groove, how to poop over a low toilet (I know, right? Gross!! But it's that kind of (I was going to say sh*t but... stuff we gotta deal with).
Prior to this, it was no problem. His legs were golden! He could - with the help of the lift chair - get out of his chair and walk to the bathroom without me. He could get himself in bed. He could - in awesome ninja-like fashion - kick a restaurant bathroom door in and roll himself in.
Now, I help him in to bed by lifting up his legs. I follow him in to the bathroom and stand behind him when he pees (he is still standing).
He said he'll walk 'til the last possible moment but he knows he shouldn't be now. He used to lift his legs so I could put on his pants. Now, he can barely lift his feet and the struggle to get dressed is even more difficult.
Luther's anxiety is at an all time high. Super claustrophobic, especially at night. It takes forever to get him settled and in to bed. The other night it was up and down and up and down until finally, at 4 a.m., he fell asleep. If you think about it - he can't move. He can't roll over. Covers on him feel coffin-like. He can't find a comfy position.
Putting him to bed is a delicate dance. Solving a puzzle. His head has to be just right on the pillow or he rolls right off. I lift his legs but sometimes they get tangled - it's dead weight. His arms have to be moved to the exact right position. His shirt cannot ride up in the back... if it does, I have to sit him back up, smooth it back down and carefully lie him back down hoping he'll hit the pillow just right, his arms won't get stuck under his back, his legs don't get tangled up.
Things are getting tougher but we're happy to be here, where it's warm. With family. It's quiet. Slow. Feels safe. Behind this warm feeling though, is being constantly tired. Scared. Sad. It's not on the surface, though. It's tucked away. It comes out in weird ways - unable to do laundry or pick up my clothes. Not caring too much about what I look like (pj's for days!).
I heard this song today by Colin Hay: Waiting for my real life to begin. It brought me to tears thinking about the past, our old life together. This weird limbo we're in between living, struggling and dying. Thinking about the future without feeling guilty. Thinking about how I slay that damn dragon every single day...
(click on this red link to hear the song)