October 4, 2018

Wednesday lunch with Jane

I didn’t have a chance to post yesterday because I came home to a broken garage door opener so my focus shifted to fixing that. Why don’t they give you a warning before they stop working?

It’s a new month, which meant a new cupcake flavor for Jane – this was maple something. It was messy but Jane seemed to really enjoy it. I asked her if it was as good as the macaroons from Paris & she laughed. I think that was a polite no. Perhaps I need to find a French bakery from time to time & switch things up for my stepmom – although I honestly think the macaroons were special because I brought them from Paris.

Jane was happy to see me again, but I could tell she was feeling down. I asked her if she was ok & she said no. Usually she tells me yes when I ask her this question. I probed & asked a bunch of questions, but I couldn’t ever get a solid answer from her on why she wasn’t ok. I think it is because she is tired of fighting this horrible disease – but my dad disagrees with me. We don’t see her condition the same. It’s hard to tell who is right. In the grand scheme of things, it probably doesn’t matter. Jane will leave this world when it is her time & I believe she will leave on her terms.

Jane & I had wanted to sit outside under the trees for our visit, but thanks to the hurricane, it was ridiculously muggy & I feared it was too hot for my stepmom. We opted instead for the clubhouse. It was pretty quiet so it worked out ok. I turned Jane’s wheelchair towards me so we were facing each other. She reached for my hand & held it the entire time. We talked about life & I shared with her my beliefs of what happens when our bodies die. I asked her again to come visit me often – I believe her soul will continue on & I believe she has the power to visit me after she passes on. Jane & I have have so much still to discuss & right now it’s me talking & her listening. I told her I know she has much on her heart she wants to tell me. She shook her head yes & squeezed my hand. So I said ok, come visit me once you leave this body which is infected with this horrible disease. She nodded her head in agreement. Jane is one of the most stubborn people I have ever known, so I am confident she will figure out a way to visit & communicate with me once her soul leaves her body. I wish we could have these conversations today but that’s not our fate. For now, I talk & Jane listens.

Dementia is very different than I anticipated. When you hear about it, it’s tied to people forgetting. But that’s not really an accurate depiction. Jane may have forgotten my name, she may have forgotten I’m her daughter, but she has not forgotten me. She knows who I am. She knows I love her. And she knows she loves me. The majority of the time, she understands everything I say to her. I think it’s why she enjoys my visits so much – because I talk to her like I did before dementia took over. I tell her about my life & ask her opinions. She can’t always give me an answer because her language has mostly been robbed from her, but much of the time, she is able to find a way to communicate with me. It really has taught me so much about listening with my eyes & not just my ears. Paying attention to the way Jane touches me or watching how her eyes move. My stepmom is still very much there – trapped inside this disease infected body.

I hate this disease.