January 15, 2020

Dinner with Jane after work

It was a busy day at work & dinner was already served when I got to Jane. Nelson was sitting with her, feeding her. I apologized for being late & took over. Nelson always takes great care of my stepmom. He could have left her sitting by herself, waiting for me to arrive & I would not think twice of it. But he didn’t. He sat with her & fed her. I appreciate how much Jane’s caregivers look after her & genuinely care for her. I know her long time caregivers will mourn her loss when she chooses to leave this world.

I took over & patted my hand on Jane’s knee to let her know it was me. I’m not sure she even noticed the change. Her eyes were open, but the lights weren’t on. The disease was winning. The med tech stopped by to give Jane her medicine & she said Jane was having a good day. Jane gave no indication she even k new I was there. To me, a good day is when she is aware enough to know I’m there, to let me know she sees me & feels my love.

Jane ate well & then I got her ready to go outside. I put on a sweater & wrapped a blanket around her legs. While I was bustling around getting Jane ready, she closed her eyes. She held them tight for a long time. We walked outside & sat under the trees. We must have been there for 10 minutes before she opened her eyes. The first pic was when we first settled under the tree. I wasn’t sure why Jane’s eyes were closed – it wasn’t because she was tired. After awhile, she began to fight to open her eyes. The question I asked – did her eyes hurt & that’s why she closed them? Was the disease making it difficult to open her eyes? I kept talking to her, trying to get some sort of a response. I jabbered on about my day & about my weekend. Eventually she opened her eyes, but it definitely seemed a battle.

There’s so much I don’t know about this disease. So many things I wish Jane could tell me. Her eyes water quite frequently. Does it hurt & that’s why she closes her eyes? Does she simply have no control over her eyes? Is she aware her eyes are closed or is she trapped somewhere else in her mind?

I always ask Jane questions, hoping she can shine some light. More than anything, I want to make sure she is not suffering. But she really can’t tell me that. So tonight I focused on the sunset. I talked her through the beauty of the colors in the sky. Does Jane see the beauty in the sky? Does this kind of thing not even register in her brain?

I hate how much this disease has taken away from all of us. I hate to think Jane doesn’t even recognize the beauty of the Arizona sky.

I never know the extent of the disease. I’ll never understand how Jane feels – fighting this disease. Honestly – I try not to dwell on all the disease has taken away & instead focus on the positives. I mean I did get to spend an hour with her after work tonight. I appreciate that time with her is not guaranteed.