May 24, 2018

Wednesday lunch with Jane:

I apologize for being a day late posting about my visit. But better late than never!

When I arrived, I found Jane sitting in one of the chairs in the great room – which is typically where I find her. As I walked up to her, she noticed me & smiled a very big smile. My stepmom was very present & aware yesterday. I grabbed both of her hands & knelt in front of her so we were eye level & chatted for a minute. No question she was happy to see me. Jane’s lunch was set on the table for her so I asked if she was hungry. She just looked at me. Perhaps she doesn’t know how to answer that question. I believe it’s been a long time since Jane has understood the feeling of hunger – she simply eats whenever we feed her. So I asked if she would like to go sit at the kitchen table. I was holding on to both of her hands for support & she tried to stand up, but with no luck. It was as if the directive from her brain to her legs was not going through. I was unable to get her up by myself so one of the caregivers came to help. Between the two of us, we were able to get Jane to her feet. However, once Jane was standing, she struggled for a minute. Finally, she was able to step forward, but she seemed very unsure. Luckily we didn’t have far to go. I held onto both of her hands & stood directly in front of her as we slowly walked to the table. Walking is becoming more & more of a challenge for Jane. I fear it won’t be long before this horrible disease places her in a wheelchair.

Jane was very happy throughout lunch. She ate all of her lunch & was eager for her cupcake. She wanted to hold onto one of my hands at all times, leaving me just one hand to feed her. I’ve mastered this pretty well for lunch, but sometimes the cupcakes are messy & this is a bit more challenging. If I let go of Jane’s hand, she quickly wants it back once the cupcake is in her mouth. I’ll keep working on my one handed skills.

After lunch, I asked Jane if she would like to go outside. She said yes. At first I thought we should simply sit on the porch of her house, but my stepmom was able to walk better after lunch so I gave her the option – the porch or the trees. She chose the trees. We would normally take the long way, but I said “should we take the quick route?” to which Jane said yes. We walked to the courtyard with me holding on to both hands for stability, and sat under the trees. Jane settled into her chair & was happy. Our same dove eventually stopped by to say hello. He has a unique marking on his neck so we know it was the same guy as last week. He sat in the trees & sung to us for a few minutes. Today he did not stay long – about 5 minutes or so. But the courtyard was busy today – lots of people walking by.

Jane & I chatted about everything going on in my life. Or should I say, I chatted & she listened. There was lots of light in her eyes & for the first time in a long time, her smile reached her eyes. When my dad texted, she grinned from ear to ear & then spoke some jibber jash. I interpreted that to be she loved him too. I had purchased Enzo a new bandana on Tuesday night & he was super excited about it. Stood up on his hind legs to give me a hug after I tied it around his neck. I told this story to Jane & then asked if she would like to see a picture of Enzo in his new bandana. She said yes! And then when I showed her the picture, she looked & then burst out laughing. Such a genuine, pure laughter. It’s been awhile since I have heard her laugh.

We sat under the trees for over an hour – until the smokers came out. When all the smokers had converged upon us, we took that as our cue to leave. I have to admit, I was a little concerned it would be difficult for Jane to stand, but she stood on her first attempt & we slowly walked back to the house. She wanted to sit in a chair in the great room again so I helped her settle in. She doesn’t always understand the chair versus the ground & needs guidance to make sure her butt lands in the chair & not on the floor. Once she was settled, the other residents began making their way over too. So I kissed Jane goodbye & told her I loved her. She squeezed my hands & said, “love you” & smiled. It’s funny how easily we take the words for granted – until the one you love is no longer able to say them. I always feel Jane’s love for me, but most days she does not have the control over her language to say the words. I cherish the days she beats the disease long enough to get the words out.

The last few visits I have felt a calmness over my stepmom. Despite the disease progressing & taking more abilities away from her, she has an air of calm. I don’t want to speculate on where that calmness comes from – I just want to express my gratitude for her finding peace. She has spent so much time this past decade in fear or frustration from this disease – this is a very welcomed change.