September 12, 2018

Lunch with Jane:

When I arrived today, my stepmom was being slowly guided to the kitchen table by Emely. I waited for her at the table which turned out to be a good thing because it took both of us to get Jane safely into the chair & tucked under the table. I don’t know exactly why – what it is the disease has stolen from her – but sitting in a chair is becoming difficult for Jane. She struggled to gauge with where she is supposed to sit versus where the chair actually is. Luckily, she has not had a big fall, but I do wonder if that is in the future.

Jane was quiet today & did not make eye contact with me until she was almost done with her lunch. It’s like she wasn’t really there. When she was almost finished, I finally got her to look me in the eyes & she smiled. The eyes are where she always makes the connection. I had a new cupcake flavor today, but while Jane ate all of her cupcake, it didn’t seem to bring the joy it used to. She’s slipping away. The disease is stealing more & more of her.

It’s finally beginning to cool off here in Phoenix so I asked Jane if she felt up to walking to the trees. She didn’t answer me, but also didn’t fight with me when I helped her stand up. She held onto both of my hands & followed me to the door. It is becoming harder & harder for my stepmom to walk, but I still encourage her to walk because I fear if she doesn’t walk, she will completely lose the ability. I don’t see her happy being confined to a wheelchair. It’s not like she has the mental capacity to be able to wheel herself around. So she would basically be stuck in one spot until someone helped her to move. We walked slowly & carefully to the courtyard & the chairs under the trees. A couple of times Jane tried to sit down where there was no chair so you really have to hold onto her tight & watch her closely when walking with her. We made it to a chair & she closed her eyes. Our short walk must have worn her out.

I had brought Robin along with us, so she & I chatted a bit while Jane slept. Once Emely came to get Robin, Jane seemed a bit more alert. She connected with me & smiled. My dad responded to our text & she responded to his note as well. Today it really felt like she was slipping in & out & more time was spent out than in. What I mean is that while Jane was sitting in front of me, it was as if she was no there at all. She was breathing, but felt cold & lifeless. When she would connect with me & she was there with me, she felt warm & happy. It’s like the disease takes away her ability to be real. I don’t know how else to describe it. It is heartbreaking to see someone you love fading away. I hold on to the short moments she is present with me & her smiles. One of the gals who works there walked by & Jane looked up at her & smiled when she passed. She said to me, that was a very nice smile. I can tell she is happy to be with you.

I do believe it brings Jane happiness when I visit, when my brother & sister-in-law visit, when her friends visit & of course when my dad visits. Even if she is only present with us for a brief moment, I know she is there somewhere & she knows we are here for her. That is why we will always show up for her – no matter how hard it is to see her this way.