October 4, 2017

Wednesday lunch with Jane

I was running late today, so Jane was already at the kitchen table eating lunch when I arrived. As soon as she saw me, her face lit up & she gave me the biggest smile. Made my day! Jane never minds if I am running late – she just wants me to show up & be present with her. A good reminder for all of our interactions in life – are you fully present?

Jane was having a good day when I arrived. She was happy & interacted with me a lot – much more than she typically does these days. I told her I had a new flavor of cupcake today & she smiled like a little kid about to be handed a cookie. I love how the simple gesture of bringing her a cupcake brings her so much joy! The cupcake was called Churro & it smelled amazing. After a few bites, I asked Jane if it was as delicious as it smelled & she said no. I said “oh no – I’m sorry! Should I bring lemon next week?” She grinned from ear to ear & said Oh Yes! Lemon is clearly still her favorite.

After Jane finished her cupcake, we went for a walk. It’s a beautiful day here today in Phoenix & Jane always appreciates the fresh air. She was happy to walk, though her pace was extra slow today. They did have sandals on her feet today instead of the Sketchers I bought her a couple of months ago so perhaps she just didn’t feel as stable walking. I need to buy her another pair so she can rotate shoes but still be wearing shoes that provide her some stability. We walked & talked & Jane did her best to talk to me. She had something important on her mind but I couldn’t understand all her words. I wish I understood better. We made a full lap of her facility before sitting under the trees to take our traditional picture & text my dad.

At some point after sitting down & while texting with my dad, Jane retreated in her mind. When I read the text from my dad to her, she was gone. She was still sitting next to me – but no longer present. She looked at me as if she wasn’t sure who I was. My heart sank. How can this disease take her away from me so quickly? I was texting my dad back & explaining what I saw when Jane looked at me & smiled. She was back! Whatever took her away into her mind didn’t hold her long. We got up to walk again. It was getting warmer & I think it was tiring Jane so we stopped in the clubhouse this lap & went inside. We sat for awhile on the couch together when Jane became very quiet again. I looked at her & said “are you tired?” She looked me in the eyes & said yes. So we decided to head back to her house to watch tv.

Once Jane & I made it back to her house, we sat together on the couch in the family room to watch tv. Jane held my hand & seemed content for awhile to just sit quietly together. That lasted about 5 minutes before she became restless & got up to walk around the room. She never went far & would always come back to sit next to me on the couch within a couple of minutes. Matt – one of her caregivers – told me she had been walking around in the house like that quite a bit today. Not sure if she felt restless or just felt like moving around. Whatever it was, I am grateful she still has the ability to walk whenever she wants.

I don’t know if I will ever understand this disease. How can she be so present with me one moment & gone the next? What causes her bad days & what allows her to have good days? Does she understand what’s going on at this stage of the disease or is that ability gone?

I never knew how much a smile could mean to me from a parent. We take for granted our loved ones will always be around – will always love us & always be there for us. That they will always know who we are & be happy to see us. Jane is still very much alive – yet some days she has no idea who I am, no smile to share when I say hello. Those days are really hard. So I cherish the days she does know me – the days her face lights up when I show up & say hello. The days when I kiss her on the cheek & tell her I love her & I can tell those words bring her joy. Never forget the magic of a smile. Never forget the power in the word love. Never forget to tell those you love how much they mean to you.

I hate this disease.