June 12, 2019

Wednesday lunch with Jane:

Summer has definitely arrived here in Phoenix! Still, Jane wanted to try sitting under the trees. She much prefers visiting under the trees than in the clubhouse. We are typically alone under the trees, where the clubhouse is crowded & noisy. Jane prefers to visit in private, and honestly, I do too. I still talk to my stepmom about my life. My share my running updates, my hormone struggles, updates on my job search, thoughts on boys. Really, anything that is happening in my life. I don’t really want an audience. And I simply want to enjoy my time with my stepmom, alone. And as the disease progresses, I find I get more protective of that time with her.

I don’t mind when the other residents say a quick hello. I enjoy talking with them for a minute or two. But then Jane & I want to be left alone. There’s a guy in Jane’s house – I call him grumpy pants because he’s rarely happy. Today when I arrived, he was right next to Jane’s table & once I sat down next to her, he pushed his wheelchair closer. I didn’t really appreciate it. I don’t think Jane did either but we did our best to ignore him. As we finished Jane’s lunch, one of the caregivers wheeled him away from us. Of course, as we were about to head outside, he’s over in our way again. I told him it was too hot to go outside & quickly wheeled Jane out.

We sat under the trees, listening to the birds while I talked Jane’s ear off. It quickly got hot – even in the shade. I was sweating, but Jane fought me about going inside. Finally, she relented & we headed to the clubhouse. Like usual, we weren’t alone. I’m grateful we had some time outside for us to just talk. When it was time for me to leave, I wheeled Jane back to her house. The grumpy dude was blocking the door & then the Romanian woman who lives in Jane’s house wanted to go outside. It was a lot & I felt a bit like I was arriving at a preschool. It is hot & I don’t know if the residents are allowed outside or not – they aren’t my responsibility. I hollered for Emely & Bindu & Emely came to my rescue. She told both residents they could go out, but only for a couple of minutes. Mr. Grumpy pants didn’t even last 2 minutes before he was back inside. Seriously – preschool! I have so much respect & appreciation for Emely & Bindu & all the caregivers. I don’t know how they do it day after day. The residents don’t know any better. None of them are trying to be difficult – it’s just the disease. But it still annoys me. That’s the raw, honest truth. Some days are less annoying than others & I am sure one day I will look back & wish this was my annoyance for the day – but right now, in the thick of this horrible disease, it annoys me.

But enough about that.

Jane was quite alert today. She wanted to hold my hand the majority of the visit & listened intently while I talked. She really does’t have language anymore, but occasionally she got out a yes or no or oh! with her eyes big. She understands me. She wants to respond – the disease just limits that ability. It definitely is a lesson in non verbal cues & paying attention to my empathic abilities. I did get a few smiles out of her including a very big one when I first arrived. At the stage we are now, I would classify today as a good day. Funny – 6 months ago this good day would have been considered a bad day. How bad will things get before my stepmom dies? Will she completely disengage before she takes her last breathe, not knowing her loved ones are by her side? I sure hope it doesn’t happen like that, but these are the kind of things that run through my mind.

Man do I hate this disease!!