March 13, 2019

Lunch with Jane:

My stepmom was sitting at the kitchen table waiting for me when I arrived today. As soon as I sat down next to her, she looked at me & smiled. It’s not the big, full smile that reaches your eyes like she used to do – but still a smile. The best the disease allows today. The way she shows me she recognizes me, she loves me & she’s happy to see me.

If you look closely at the picture of Jane, you’ll notice she is leaning back – almost like she is unable to sit upright. It reminds me of someone who is in a back brace – almost too stiff. This is new. Emely told me she’s been like this since this morning. It made it difficult for Jane to drink water. We had to take small sips – when I tried more she choked on the water – you know like when you drink too fast. So we took it slow. She was able to eat normally, thankfully. But it was awkward – like she wasn’t able to move her head or shoulders. She was, however, able to move her arms & legs, which is good.

Today’s cupcake was chocolate carmel mocha – a new flavor. Jane enjoyed it. She always enjoys new flavors. When was done, I grabbed the foot rests for her wheelchair (which always seem to be off & in her room) & her blanket. I told Jane it was windy outside, but we could try sitting outside if she wanted. We made a lap around the courtyard & then sat under the tree. Jane was uncomfortable so I asked her if we should go to the clubhouse. She said yes. I don’t mind visiting with Jane in the clubhouse but it’s always very warm in there & tends to have bunch of activity. Jane & I both prefer our visits outside under the trees, but the wind made that impossible for us today.

I’m not sure how to explain Jane today. She was alert & listening to me speak. But she also seemed to be struggling a bit. Did it have to do with her leaning back in her chair? Was it harder for her to breathe? Was she frustrated she wasn’t able to move? I don’t really know. I removed her footrests so she could rest her feet on the floor – which is what she prefers. And I removed the blanket because it was so warm inside. This freed up Jane’s hands & she reached for mine. She wanted to hold my hand.

I noticed a rash on Jane’s neck. It’s along the fold of her neck – could easily be from the roll of her skin. Most of the muscles in Jane’s face have atrophied so her skin is baggy & folds over. Normally her head is not held back, but today it was – making the rash visible to me. I applied some lotion which Jane appreciated. The rash doesn’t seem to be itchy or hurting her, which is good. Patty came by while we were sitting there, so I had her take a look. She agreed it looked like a rash & said she would keep an eye on it. Emely agreed to keep an eye on it too. There are so many things that occur when you aren’t mobile. So many basic things we take for granted. We can’t necessarily stop these things from happening – but it’s important to make sure Jane is not feeling any discomfort. I can’t imagine how frustrating that must be to feel trapped inside this body by this horrible disease.

I sat with Jane for quite some time, holding her hand. I shared with her the details of our meeting on Monday & shared with her some things going on in my life. My stepmom is no longer able to provide me advice, but I know she listens & understands. I know she appreciates being a part of my life – even if the conversation is one sided. When it was time for me to go, I got Jane tucked under the blanket & ready to head outside towards her house. I asked her if she was ready & she said no. She’s never ready for me to go. I told her I wished I could sit with her all day long but I had a boatload of work that needed to be handled today. She understands & always relents. But she can’t get a longer visit if she doesn’t ask for it – right?

When Jane & I made it back to her house, Emely had her hands full with the residents. She wanted to change Jane before moving her to the chair but needed to finish up with the resident she was currently helping. She asked me to leave Jane in her wheelchair & promised to be with her in just a few minutes & would move her to a chair in the great room after. I asked Jane if that was ok & she nodded. We all trust Emely. She is so kind with all of the residents & she truly cares for them all. There is another lady who lives in the house whom doesn’t speak english. She wanted to count Emely’s fingers & then she gave Emely a hug. Emely happily welcomed the hug. She never loses her patience with the residents even though I know there are days she is really pushed. I am incredibly grateful to her. I tell her every time I don’t know how she does it. I don’t think I would be as good if I were in her shoes.

I kissed Jane goodbye before I left & told her I loved her. I told her I would see her again soon & she nodded her head. Truthfully, I never know when I leave Jane if that is the last time I will see her. I don’t know how much time we have left. I don’t know if there will come a time where Jane won’t know me. I hope not – but it is a real possibility with this disease. So I make sure to always say what is on my mind & heart. To always kiss her goodbye & tell her I love her. She always squeezes my hand or finds some way to tell me she loves me too. For that – I am grateful.

I hate this disease.