May 22, 2019

Lunch with Jane:

It took quite a bit of time for Jane to beat the disease today & be present with me. All through lunch Jane just felt like a shell. Her body was going through the motions of eating, but there was no recognition of her being aware. This is how it is when the disease is winning. A couple of times she reached for my hand, but I can’t say if that is because she was aware I was there or just out of habit.

It’s a really nice day here in Phoenix – was only in the 60’s when I visited Jane. So we took advantage & sat under the trees to visit. Jane didn’t seem aware when I got her ready to wheel outside, but by the time we got to the trees & I pulled up a chair to sit in front of her, she had come alive. She looked into my eyes & smiled. It was a really nice smile. The kind of smile that reaches her eyes. Those are rare these days. She seemed able to hold her awareness the rest of our visit. She even battled with me a bit when I told her it was time to head inside. She enjoys the visits & especially enjoys when we can visit outside under the trees.

The visits aren’t the same anymore. I talk to Jane & she listens, but rarely is she able to engage back with me. Where she used to respond with yes or no answers, I now get no answers. I know she’s there, that she’s alert & listening to me, but for the most part, the disease has taken away her ability to respond. She can’t even squeeze my hand anymore. Is she inside answering me – her body just isn’t able to cooperate? Does she remember how to respond? I don’t fully understand how this disease impacts her. Honestly – I’m not sure I want to know. I feel her sorrow on her bad days – that is more than enough knowledge for me to understand how horrible this disease truly is. In that way, it’s easier when she is less aware because she doesn’t feel the sorrow.

I’ve been visiting with my stepmom every week for over 3 years. It’s getting harder to remember the days of my feisty stepmom. The days we fought or hand fun shopping or baking together. I don’t want to forget those days. I hope that once she is gone & the pain & sorrow that comes with dementia is lifted, that I forget these current memories & remember our memories before this disease invaded our lives.

I hate this disease!