January 1, 2020

Wednesday lunch with Jane:

It’s the holiday, which meant I had the day off work. So I was able to see Jane for lunch, instead of dinner. I was looking forward to it. She’s so tired at the end of the day, I rarely have a good visit with her over dinner. But it’s also been awhile since I’ve visited at lunch so I’m never really sure if it’s just the progress of the disease.

Jane was quiet when I arrived. She was at the table waiting for lunch. She looked at me, but I’m not sure she recognized me. Honestly, most of the time I visit her anymore, she is just a shell. So I’m used to it. I fed her quietly & when we were done, told her we were heading outside.

There were blue skies & sunshine here in Phoenix today, but it was cold. Emely had set her sweater around her shoulders but I told Jane she needed to put it on. She didn’t fight me today like she often does as I maneuver her arms into her sweater. In fact, she was doing what she could to help me. I attached her footrests to her wheelchair & grabbed a blanket to wrap around her & we headed outside. It was quiet. Even though it’s holiday, apparently it’s not a holiday the part time visitors feel a need to show up for, which worked for Jane & I. We like our alone time. We were able to sit peacefully under the trees without interruption.

Jane livened up once we were outside. The fresh air usually does that to her. She looked into my eyes & relaxed. She recognized me. I sat down in front of her after we took our selfie & she reached for my hand. She held it our entire visit.

I have a great relationship with both my mom & dad & we talk about many things. But Jane & I have always had a different relationship. We’ve always discussed things I don’t discuss with my mom or dad. Maybe because she didn’t raise me. Maybe because we really didn’t enter each other’s lives until I was an adult. But Jane sees me differently than my parents & I suppose I see her differently. And she’s always had a knack for providing great counsel – when I was open to hearing it. I always do lots of reflecting as we approach the end of the year & enter a new one & this year is no different. I’ve had lots on my mind recently. Today I really wanted to talk to Jane. I really wanted her counsel. I talked, but I don’t think Jane listened. She definitely did not have any words of wisdom to share. I tried – for almost an hour. No luck. Could she not understand me? Was she too wrapped up into her own sorrow to see anything beyond? I really don’t know.

What I know is I hate this fucking disease. I miss my stepmom. I miss our conversations. I’m tired of mourning the loss of a woman who still sits before me, living & breathing. Will it be easier when she stops fighting & leaves this world? Will it be easier to move on? Or will I miss her even more? I feel like we are stuck in limbo. And we’ve been stuck here for a long time. I’m tired of being stuck in limbo. Isn’t my stepmom tired of being stuck in limbo? When I saw her today I wished her happy new year & asked “did you ever think you’d live to see 2020? I know I didn’t think you would.” Is it a good thing she did or bad thing? Because she’s now entering a new decade of fighting this monster called dementia. Could’t we have just left that monster behind? Why must it drag into a brand new decade?

I HATE THIS DISEASE!!