June 28, 2017

Wednesday lunch with Jane:

I hate the bad days. Hate to think Jane is scared or suffering in some way. I prey the disease has also stolen that ability from her.

Today Jane was somber, quiet. No smiles for me, no smiles as I told her Bobbi will be here in a few days to visit, no smiles for the cupcake. There was no light in her eyes today. She was sitting hunched over & walked this way too. She moved slowly & seemed to have very little energy. I know she recognized me, I know she understood what I said to her. When an answer was warranted, she would respond with a yes or no. It was a bad day. In an effort to cheer her up, I said “guess what?!?!? Today is Wednesday which means just a few days from now Bobbi will be here. Are you excited?” She said yes. If you didn’t know she suffered from this horrible disease called dementia, you would think she was lying. I know different. Jane is incapable of lying – she tells you her honest truth. She simply had no ability to share emotions today.

I brought a new cupcake for Jane today – Pineapple Coconut. It smelled wonderful & Jane liked it, but it sure was messy! It refused to sit upright so no picture to share & it was all over my hand & crumbled onto Jane’s pants. After cleaning Jane up, I went to wash my hands. Normally Jane would follow me – eager for our walk together. Today she did not move – was still sitting in the exact same position when I walked back to her. It even took some persuasion on my part to get her up to walk.

It is warm again today but much cooler than last week. We walked slowly down to the clubhouse & sat on the couch to chat. Normally Jane can’t sit still for long & prefers to make laps in the clubhouse. Today she leaned in to me & rested her head on my shoulder. I asked her if she was tired & she said no. We just sat there quietly, Jane always holding on to me. After awhile I asked Jane if she would like to go back to her house & sit by the tv & she said yes. It took Jane longer than normal to get up & begin to walk. We walked slowly back to her house where she sat down in the family room.

I noticed Jane kept putting her hands to her head, like you would when you have a headache. So I had the nurse called to check on her. She took Jane’s temperature & it was normal but she commented Jane felt warm. They tried to give her a popsicle but Jane was not interested so they tried to get her to drink some water. Jane told Emely (one of her regular caregivers) she was tired so she walked Jane back to her room & I followed. Jane laid down & closed her eyes so I kissed her goodbye & told her I would see her soon.

When I first called for the nurse, I asked Jane if she wanted to try laying down to see if that helped her head & she said yes, but when we got to her room, she sat on the edge of her bed. I reached to help her lay down like I always do & she laid down, but then grabbed my arm with a death grip & refused to let go. She seemed scared. I sat next to her & tried to calm her down. I tried to get her to let go of my arm because it was a weird angle & she wouldn’t. When she finally did release her grip, she got up & walked out of her room. It was strange & something I have not experienced before. I mentioned it to the nurse so they can keep an eye on her.

I hate this disease. I hate what it does to a woman I knew as strong, vibrant & not afraid of anything. I hate the bad days yet will always be grateful for the time I have with Jane because I know our time is limited. This disease will take her from us. We don’t know how or when – but we know it will.