July 26, 2017

Wednesday lunch with Jane

Not the best day for Jane today. It took her quite awhile to realize she knew me. And even then she seemed to slip in & out of knowing who I was. She allowed me to feed her & she ate well. As you can tell from the picture, she was eager for her cupcake – it was lemon today – her favorite.

After Jane finished her cupcake, she just sat there & did not seem interested in getting up from the table to walk with me. Emely (one of her caregivers) was able to get her up but Jane seemed confused & absolutely did not want to hold my hand. So I just walked beside her around her house until she figured out I was safe. When the dots all finally came together, Jane looked at me & smiled & reached for my hand. So we headed outside.

It was hot & humid but Jane was determined we sit for awhile under the trees. When she got warm, we headed into the clubhouse. Normally, Jane & I will chat & at first she wanted to talk – but all that came out was complete gibberish. I did my best to understand but it was a real struggle today. She gave up & seemed to retreat inside herself. She sat very quietly next to me in the clubhouse, not even responding when my dad texted her or when the hairdresser, Michelle, stopped by to say hello.

It took quite some convincing to get Jane to stand up for me to walk her back to her house. When we went inside her house, Neil was being his usual loud self & Jane doesn’t like loud noises, especially on bad days like today. So we walked back to her room & sat on her bed. It was cool in Jane’s room & quiet, so honestly I preferred that to the great room with everyone else. At one point, Jane stared deeply into my eyes while she held my hand & I was overwhelmed with this sense of sadness. I believe it was Jane’s sadness I felt – she was trying to communicate with me but all that came across was sorrow. I don’t believe she is in pain, so perhaps it’s just the horribleness of this disease that is bringing her down. I know she misses my dad & I know she misses being able to communicate with us. Some days I am able to understand what Jane is trying to tell me – other days I am at a complete loss.

I hate this horrible disease. I hate what it has done to my stepmom, to my dad, to our family. I hate that I can no longer ask my stepmom for advice, or cook with her in the kitchen, or tease my dad with her. I hate how much this horrible disease has taken away from all involved. At the same time, I am grateful for the time with my stepmom. Grateful I am still able to see her, to hold her hand, to talk to her, even if she only listens. I know a day will come I no longer have that.