August 2, 2018

Lunch with Jane:

Jane was sitting at the kitchen table when I arrived, waiting for me to help her with her lunch. It seemed to take her a few minutes to connect with me this time. I’m not sure if it’s because she was hungry & focused on the food or if it was just the disease taking over. Some days it seems to take her brain a few minutes to connect. When she finished lunch, I pulled the cupcake out of my purse & told her it was a brand new flavor. She smiled. I told her it was lemon cream pie so I thought she would enjoy it. When she finished the cupcake, I asked her how it was & she smiled from ear to ear. I guess she liked it.

It’s becoming harder & harder for my stepmom to talk. I know she understands me – I believe she just doesn’t have the ability to speak with words. She does her best to communicate with me in other ways. Nodding her head, smiling, squeezing my hand – whatever is available to her at the moment. I can not even imagine how frustrating it must feel to be trapped inside this horrible disease.

I asked Jane if she would like to head to the clubhouse since it’s too hot for us to sit outside. She nodded yes. I asked her to wait for me while I grabbed her wheelchair from her room. Emely came over to help me get Jane into the wheelchair because it’s still a bit awkward for Jane & me. Once Jane was settled, Robin came over (another resident in the house). I asked Robin if she would like to go with us to the clubhouse & then Emely could get her when she took the lunch trays back to the kitchen. With some encouragement from Emely, Robin decided to join us. Robin doesn’t have family in town so she doesn’t have many visitors. And she is well enough I knew I could keep an eye on her & Jane at the same time.

We made our way to the clubhouse & settled on the couch. Robin told Jane & I a few stories of her life, which Jane seemed to really enjoy. I shared some details of Jane’s life with Robin & Jane nodded in agreement. I am my stepmom’s voice for her. I know that’s my role & I am grateful to have the time with her & to help her connect with her friends in the house.

Emely came down about 30 minutes later with the lunch trays & after she returned them to the kitchen, she took Robin back with her to the house. That gave Jane & I our alone time – which I know she cherishes as much as I do. We chatted about everything going on in my life while she held my hand tightly. My dad texted us & when I read Jane his text, her face lit up. Their love transcends even this disease. I often tell my dad it is he my stepmom holds on for. She knows her kids will be fine after she is gone. But she just can’t seem to say goodbye to my dad. Love – it sure is a powerful thing.

It was time for me to leave, but Jane wasn’t ready. I told her I would stay with her awhile back at the house to get her settled so she said ok. On our way back, we saw Jane’s friend, Marianna, so we stopped to chat with her for a few minutes. When she first moved into the facility, she lived in Jane’s house, but was moved to a different house pretty quickly. Marianna is not as progressed in this disease as my stepmom & those in her house. But Marianna & Jane formed a bond & they are both very happy to see one another in the courtyard.

I got Jane inside & settled into the chair she likes in the great room. I sat with her for a few minutes. She squeezed my hand tightly. I told her I loved her & kissed her goodbye.

I hate this disease. I hate that my stepmom can’t tell me what’s on her mind. There is so much I need to hear from her – so much I know she wants to say to me. But the disease stole that ability from her. At the same time, I am grateful for the time with her. I am grateful she still knows me, still feels my love & still shows me love. I hope that ability stays with her until she leaves this body.