May 8, 2019

Wednesday lunch with Jane:

I have a confession to make – I visited my stepmom twice last week. We took a pic, but I never posted an update. I don’t really know why. I could give you an excuse about how life has been busy – but at the end of the day, that’s just an excuse. Truthfully, I probably just didn’t feel inspired to write. Nothing really changes. There isn’t much to tell about our visits. I’m losing my drive to share this journey. It’s taking its toll.

But I know it’s important to share the reality of dementia, so I will be better.

Jane was sitting at the table when I arrived, like she is 95% of the time. She didn’t really care when I sat down next to her. She was focused on eating lunch, and if I wasn’t going to feed her, she didn’t have much need for me. Did she know who I was? Was the disease keeping her trapped inside & unable to engage with me? I have so many unanswered questions about the impact of this horrible disease.

About half way through lunch, I tapped Jane’s hand. She grabbed my hand & held it the rest of lunch. She finally looked deep into my eyes after she finished eating & seemed to connect. I asked her if she was ready to go outside. It’s nice here in Phoenix & I knew it would be nice to visit under the trees. I patiently waited for one of the residents to pass us, so I could pull Jane’s wheelchair out from the table & add her foot rests. Jane battled me to put her foot on the foot rests, which frustrated me. Was she trying to be difficult or just struggling to understand what I was asking of her? I finally got her to cooperate & we headed outside.

The birds were talkative today & there was a nice breeze blowing. We talked about my running & I shared some pictures from this morning, but Jane was more interested in listening to me talk than look at pictures. When my dad texted us & I said “Jane, you have a message from Gary,” my stepmom perked up. It was the most alert she had been. When my dad said he loved her, Jane smiled. It was the first smile I had seen today. This also seemed to lighten her spirit because she was more aware & more engaged with me. She began to babble quite a bit – but none of it was words. I wonder if my stepmom knows the words don’t come out correctly. I mean she doesn’t seem to get frustrated I don’t understand & she definitely seems to understand what I say to her. Maybe the babbling is simply her attempt to communicate?

It was a bit busy in the courtyard today. Some guy was trying to get into the gate but didn’t know the code. I went to help him just as one of the workers came out to help. 2 of the ladies who live in a different house & like to walk after lunch decided they would like to sit under the trees today too. I went to help them with the chairs & then I needed to help them get up when they were ready to leave. Jane didn’t seem to mind. Although I am going to be honest, I don’t feel comfortable staying too far from Jane when we are sitting outside. I don’t think anything would happen, but for some reason, I have an irrational fear she will fall out of her wheelchair on my watch.

When it was 1 pm, we decided to head back inside. I’m sure Jane would have been content to sit outside for another hour but I have much work to get done & unfortunately don’t have several hours to visit. We headed back inside & I set Jane next to Emely. Emely was filling out the daily chart & talking to Myron’s grandkids – they had come to visit today too. I would guess them to be 4 or 5 & Jane had enjoyed watching them play outside on the grass earlier. My stepmom has always loved little kids & that love has not been taken by this disease.

I didn’t see Robin today & I don’t remember seeing her when I was there on Saturday. She always comes over to say hello. I asked Emely about her. Emely said sadly her disease was progressing so Robin was in her room. I’ve watched many residents progress with this disease over the last 3+ years. It effects everyone differently & you never seem able to predict when it’s going to rapidly take a turn for the worst. Many residents have died. It’s the reality of this horrible disease. I don’t know when Jane will leave us just like I don’t know with any of the other residents. I hope for a swift death for my stepmom as she has already suffered so much. But that’s not really something that is in my control. So however this journey looks for my stepmom, I will be there for her.

I hate this disease.