September 5, 2018

Today began rough. When I arrived, Jane was being taken back to her bedroom by the caregivers to be changed. I waited for her at the kitchen table & set down her cupcake. Once she had been changed & was heading out of her room, I met her half way. She was walking very slowly & apparently tired. She sat down in one of the chairs. I couldn’t convince her to stand back up. She just looked at me with a blank stare – even telling her I had a brand new cupcake flavor today didn’t seem to connect with her. I finally had to get Emely to come help me. Jane stood up immediately for Emely – I told her that hurt my feelings. No reaction out of Jane. 

I got her to the table & fed her lunch. No smile or any real interaction with me the entire time I fed her. She didn’t even seem excited about her cupcake. I mean she ate it all – but normally I can tell she is excited for her cupcake & today it seemed no different than the rest of her lunch. Once she finished it, I asked her if she felt up to walking or if she wanted me to grab her wheelchair. She didn’t acknowledge I was talking to her. Emely told me Jane had been walking around a bunch this morning but seems tired now. She suggested it would be best if I grabbed the wheelchair for Jane – so I did. 

Remember that annoying woman I mentioned a couple of weeks ago? Well today she came into Jane’s house to visit with one of the residents shortly after I got there. She couldn’t seem to get the door open (the doors have codes & she didn’t seem to know it) & I saw her standing outside while I was struggling to get Jane to the table to eat. Even though I wanted to leave her outside, the good in me made me open the door to let her in. I simply opened it & walked away. For sure I was not staying in the house with Jane to visit today. I later asked Emely who she was & she said she was with hospice – but not a nurse or doctor – she wasn’t sure exactly what her role was. I told Emely I didn’t like her & why & Emely shared she didn’t really like her either. At least now I know who she is – but of course when I left today I couldn’t find any members of the staff to discuss this woman with. Another day I suppose.

You may remember Robin from Jane’s house. She likes to help Emely. Today Emely & Bindu seemed to have their hands full so when Jane & I headed out, I asked Robin if she wanted to join us. Emely said oh yes Robin – go with Jennifer & I will get you when I take the lunch trays back. So Robin joined us & was super helpful holding the gate door for me while I wheeled Jane out. Jane was so lost in her own thoughts today, it was nice to have Robin’s company. I knew Emely wouldn’t be too far behind us so I knew it wouldn’t interfere long in my visit with my stepmom. 

When we got to the clubhouse, I sat down next to Jane & turned her wheelchair so we were facing. She was quiet. I suppose we were behind schedule & my dad texted us. I read his text to Jane & she smiled. The first real connection today. Emely came a few minutes later to get Robin & after they left Jane began to wake up. She looked at me & smiled a big smile. She was back! We chatted for awhile & I could tell Jane was connecting more & more with me. I asked her if she was up for a photo & she said yes & smiled. I showed her our photo after. She put her hands on my phone & held it while looking intently at our picture. When she let it go, she looked deep into my eyes again & smiled. It was such a warm, bright smile. It was full of love. I was overcome with emotion. I told her I loved her & I missed her. I said “man do I really miss you.” She squeezed my hands & closed her eyes. I made her promise me again to come visit me in my dreams once she leaves this world. 

Jane & I did not have the best relationship before she became sick. We had great times together & horrible times together. I’ve learned so much through this horrible disease. Looking back now, I know Jane always loved me – as I always loved her. Our relationship was just hard. I’ve told her everything on my heart & she has listened. I know there is much on her heart she wants to share – the disease just won’t allow it. I can’t tell you how much I wish she & I would have gotten to where we are today – before she got sick. So when I say I miss her – I miss the Jane from long before dementia entered her brain. I miss the days we went shopping together or the time we tiled my bathroom together & laughed & yelled & made a big huge mess! I miss my stepmom who seemed to see right into my soul. My stepmom who was always up for creating something with me & seemed capable of creating anything I imagined. My stepmom who taught me to never take shit from anyone – not even her! 

Life is funny. We rarely understand how important someone is to us until we lose them. I am grateful I am still able to see Jane & feel her love but man do I wish she could talk to me!