January 1,2018

Monday lunch with Jane:

She was very tired again today. I think it took all of her energy to walk to the clubhouse. As soon as we sat down, she leaned against my shoulder & fell asleep.

Jane was sitting at the kitchen table when I walked in, but she barely acknowledged me. Her head was down. It wasn’t until she finished her lunch & it was time for her cupcake that she made eye contact with me. Once she caught my eyes, she recognized me & smiled. She then reached for my hand. Was she lost in the world of this horrible disease when I first arrived?

The cupcake store was closed today, so I ran to the grocery store to get a cupcake instead. I was not impressed with AJ’s last time, so today I went to Fry’s. They had a big cupcake with happy new year written on it – that did the trick. It was just vanilla with vanilla frosting but Jane enjoyed it. She ate every bit & seemed to enjoy it. When she was done, I asked her if she would like to go for a walk. Today she hesitated – that is not typical. She typically looks forward to our walks. I helped her up & we headed outside. Myron was trying to catch the door code so I had to be tricky to make sure he didn’t see it. It’s not so much a problem of Myron escaping, but the other residents he lets out. There is a reason the doors are locked with codes.

Jane & I chatted for a few minutes while we walked. I told her I was leaving tomorrow for Orlando to run my race. She said ok & smiled. She was walking very slowly today & hunched over. When we made it to the clubhouse, she was ready to go inside & sit down. It was quiet today. When I arrived there were no other visitors. Thankfully that changed & several visitors came while I was with Jane. We walked to the couch & Jane immediately sat down. Normally she waits on me. She was tired. Once I sat down, she leaned in to me & laid her head on my shoulder. She fell asleep right after we took the pic & before we had even texted my dad. She was sleeping soundly, so I simply sat with her. It’s funny how you perspective changes when someone you love is sick. Before this disease I never would have had the patience to simply sit with Jane while she slept. Now I am grateful to be able to comfort her & sit with her quietly. I don’t know how much longer I have with her – every visit matters.

The disease has also taught me patience. Having Jane in a facility means many other people are caring for her – people that are often times complete strangers to me. What I love about the facility where Jane lives is that every person working there, where they personally care for Jane or not, know her. They also say hello to her & call her by her name. Today one of the caregivers from one of the other houses walked into the clubhouse while Jane was sleeping. She asked me if I was someone to Jane. I said yes – I am her daughter. She said well, you have a very beautiful & kind mother. I said thank you. She looked at Jane & I said she’s sleeping – she’s fine. Apparently my word wasn’t enough because she walked right up to Jane & woke her up! I have to say, I was a bit annoyed. Jane was sleeping soundly. I did not mind that she was sleeping. I did not need help. But I have to remind myself, it is the caregivers job to care for the residents & if they don’t know me, they don’t know I don’t mind caring for her while I am there. Patience. And gratitude for the staff caring for my stepmom.

Jane eventually woke up, but she was very quiet. I asked if we should walk home & she said yes. Again, we walked very slowly. Jane did not want to lay down today – she wanted to sit in the great room with the other residents. So I got her settled into one of the chairs & kissed her goodbye. I fear we have reached the stage of more bad days than good days. My sister Bobbi will be here soon to visit for a week. I hope that brings light to Jane. I know she is looking forward to seeing her daughter.