June 6, 2018

Lunch with Jane:

It’s a new month, which means new daily cupcake specials & FINALLY they had 2 new flavors. I went with the fruity pebbles today. It smelled & looked like the main flavor as orange. Jane liked it, but didn’t have much to say about it, so I can’t tell you for sure. She still holds that lemon is her favorite.

Jane was sitting at the table when I arrived & leaning against the wall. I have to get eye level with her to get her to connect, but once she looked deep into my eyes, she smiled. As I set my purse & the cupcake down & grabbed my chair I mentioned having a brand new cupcake flavor today. Once I sat down & grabbed her hand, I asked her if she was excited for a new flavor & she said yes. To the outsider who doesn’t know better, they may say she wasn’t excited because there was no excitement in her voice. But I know better. My stepmom does not have the ability to express excitement – she is only able to be true. She would have said no & not worried about hurting my feelings if she wasn’t excited. But, if you’ve been following Jane’s journey, you know the simple sight of a cupcake brings her joy – no matter the flavor.

A few times during lunch, Jane looked deep into my eyes & smiled. She held my hand & was very present – even if she had little to say. At one point, I accidentally scratched her arm with my fingernail as I was feeding her & she said Ouch! I found it curious she remembered that word as I can’t remember the last time I heard her use it, but it was nice to know she was aware of pain & what it was (even if this was a very mild scratch). I often wonder if her brain is able to register pain & if she would be able to communicate pain if that were the case.

When we were done with the cupcake, I helped my stepmom up from the table & we headed outside for a walk. It’s a nice day today in Phoenix. Quite a few clouds in the sky with a breeze so it wasn’t too hot for us to sit outside.

Jane seemed more alert today as we headed outside & while she does hunch over significantly (think the old witch in Snow White who hands her the poisonous apple), she was walking ok. We decided to take the long way to the courtyard where we normally sit. We had to walk slow & we stopped often for a break, but Jane made it. Though when we were almost to the chairs, Jane stopped & bent over. She was holding on to my hands. I asked her if she was ok & she said no. Her legs were wobbling so I quickly grabbed her a chair & helped her sit down. Once she was situated in her chair, she seemed to be better. I grabbed a chair for me & sat next to her. She held tightly onto my hand & rested her head against my shoulder. I told Jane all about my trip to Minnesota this past weekend & my race & she listened intently. After I showed her my pics from the race we took a picture & texted my dad. Jane waited for him to respond & once he had, she closed her eyes. I spent the rest of my visit with Jane sleeping against my shoulder.

When Jane & I first sat down in the courtyard, there was a woman sitting there, on the telephone. I don’t know her, but I have seen here there before on occasion. My guess is she is a social worker. Since we are self pay, social workers are not involved with Jane. She sat there for at least 10 minutes & I will be honest when I say it annoyed me. I wanted privacy with my stepmom & I feel like she should have given that to us. There is a waiting room out front she could have sat to make her notes. Instead, I felt like she was invading on my time. We will occasionally see other family members sitting out there but this never bothers me. We are kindred spirits – going through this horrible journey alone but yet together in that moment. You can’t understand how this feels if you too have not experienced it. I know I had no idea until I began to live this journey.

When Jane & I first sat down & while this other woman was sitting there, I could hear a dove cooing from the tree. I couldn’t see him, but I wondered out loud to Jane if that was “our dove.” I knew he would not come down to visit while this woman was there. He did eventually fly down & walked in front of Jane, but she was sound asleep by this point. It was “our dove” but he didn’t stay since Jane was sleeping. He flew back up to the big tree where I heard him singing when we first arrived. I find it curious this same dove comes to visit every week. It’s been 3 or 4 weeks now. He has a mark on his neck that is different from the other doves. Does he visit Jane every day? I admit, I enjoy his presence. It’s peaceful & calming.

A little after 1 the smokers appeared & that was my cue to take Jane back inside. I woke her up & stood in front of her to help her get up. She didn’t want to go inside – but it was time. We got her to her feet & she held onto me tightly while we slowly walked back to her house. I got her situated inside & thanked both of her caregivers for all they do. I am incredibly grateful for the love & care they provide Jane. Their job is not an easy one & I will never be able to express enough gratitude. They allow me to simply sit with my stepmom & enjoy our time. They take responsibility for bathing her & changing her & just overall watching out for her well being. It takes a very special person for this kind of work.

These quiet days are the norm with Jane at this stage in the disease. I am grateful for days when she is able to engage with me, but most days she is quiet & wants to sleep. And while I so miss the days of a 2 way conversation with my stepmom, I value any time I get with her. This disease sure gives you perspective on just being present in the moment. I will keep showing up for my stepmom until she takes her last breath – even if she forgets who I am, loses all ability to communicate & just sleeps. Her soul will always know me & she will always know I am there beside her.