September 12, 2017

Lunch with Jane today. I hate to say it, but it feels like we have moved to the phase of more bad days than good.

Jane was asleep on the couch when I walked in today. She woke fairly easy for me & looked at me & smiled. She recognized me, which was good. But it took considerable convincing to get her to stand up – which is not typical. I even tried showing her the cupcake in my purse. Was the disease just winning today & her body wasn’t cooperating with her? Did she not understand my request to stand up? It’s hard to tell.

Once I got her up, she walked with me to the kitchen but then seemed uneasy – or unsure – about sitting down. Again it took some persuasion on my part. Again – this is not normal. Once she was sitting down & I had pushed her chair up to the table so she couldn’t escape on me, she seemed ok. She ate well for me & was happy with her cupcake. Today was a new flavor – peanut butter brownie. Jane told me it was good. While she ate without challenges, drinking seemed to be a struggle. Each time she appeared to not understand how to swallow her water. Thankfully she did not choke on it but it was definitely a struggle. This was a first – at least when I have fed Jane.

I asked Jane if she would like to go for a walk after she finished her lunch. She looked me in the eyes & said oh yes. So we walked – very slowly & Jane held tightly to my hand. Her right hand was clenched & most of the time she held on to the edge of her blouse. She didn’t seem able to open it fully – even if she grabbed on to me with her right hand, her middle two fingers were clenched. She was twitching in that arm today so perhaps this was an effect of the disease today.

We walked briefly to the big trees & sat down. There are many birds in the biggest tree & I tend to say hello to them when we walk by. On a good day, that makes Jane smile & giggle. Today she gave me a big grin & when I told her they were saying Hello Jane – she grinned even more. We sat under the tree in the shade until Jane was ready to walk again. But we didn’t make it far – again – she was feeling very tired today. We made it to the clubhouse when Jane stopped. I asked her if she would like to go inside & she nodded yes. So we went inside & sat down on the couch. I did my normal chatting away to Jane with what is going on in my life while she held my hand. She was very quiet today & I looked over to her to see she had fallen asleep. So I woke her up & we headed back to her house. Before she fell asleep I asked her if she was having a bad day today & she said yes. I was trying to determine what was wrong so I went through a list of questions. Most of the time she just stared at me, but when I asked if her head hurt, she said yes. But she couldn’t tell me anything beyond that.

Jane walked slowly & cautiously back to the house. She walked back to her room without any struggle & laid down on her bed. I covered her up & leaned over to kiss her. Her eyes were already closed. I’m not sure why she was so tired today but sleep seemed to be her best choice. I stopped to chat with Matt, one of her caregivers, on the way out. He said she had been napping on the couch this morning (which is how I found her when I arrived). He said she appeared to have a rough day yesterday too & was pretty grumpy, which is not typical for Jane. I told Matt she said her head hurt so he said he would call the med tech & have her come check on Jane. My guess is the disease is just pushing her hard right now. It seems on days the disease is bad Jane is tired & her head hurts. It is my belief Jane – in her typical stubborn ways – fights the disease hard to remember. She may not care about the details but I feel she fights hard to remember those she loves. I feel fortunate most of the time she knows who I am.

This disease leaves me with so many questions. Questions I don’t know I will ever have answers to & I have to be ok with that. It pushed me to feel my visits. I can jabber on to Jane about my life – which I do think she enjoys hearing about – but she can’t really answer me. So I rely on my intuition – I do my best to listen with my heart – not my ears. Am I interpreting Jane correctly? I sure hope so – but man who knows! Could I do something more? Am I missing something very important?