October 11, 2018

Wednesday lunch with Jane:

I apologize for not posting yesterday. I had much to do after my visit with my stepmom & just forgot to post our update.

Yesterday was my dad & Jane’s 20th wedding anniversary. My dad reminded me of that before I headed out to visit Jane so I looked for a special cupcake to celebrate. I went with wedding cake & Jane said it was delicious. I asked her if she remembered their wedding day & she said yes with a big smile. I shared my memories of that day & Jane smiled & held my hand. When my dad texted us to wish her happy anniversary & tell her she is just as beautiful today as the day he married her, she smiled from ear to ear. She was very happy.

It was a nice day in Phoenix, temps are finally coming down, so we headed for the trees & enjoyed our visit outside. Jane prefers when we can visit in the courtyard like this. We typically have this space completely to ourselves, which is the way Jane prefers. I’ve also learned Jane prefers when I position our chairs face to face, so I am sitting directly in front of her. This way she can look into my eyes & hold my hand. She is much more engaged this way. I’ve long shared, it’s when Jane’s eyes look into mine that she makes the connection. Sitting knees to knees allows her to keep a constant lock on my eyes & stay connected.

We chatted about my upcoming race on Sunday. I shared my strategy to obtain my sub 2 hour time & when I asked Jane if she felt like it was a good plan, she said YES & squeezed my hand. I told her everything else going on in my life while she listened intently, always holding my hand. She would squeeze my hand anytime she wanted to share her support. I love that she still finds ways to communicate with me, even if this horrible disease has taken away most of her verbal skills.

We were enjoying sitting outside so I asked Jane if she would like some music. She’s been a long time fan of Neil Diamond & we like to listen to Sweet Caroline together. I played the song & sang along & Jane would occasionally chime in to sing too. She was smiling the entire time.

I shared last week dementia is very different then I expected going into it. We always hear it described as people forgetting. But I’m not sure that is an accurate depiction. Jane has not forgotten me. She has not forgotten my dad, nor my sister or brother or sister-in-law. She has lost her ability to speak, but not to listen & understand. She is very much still there, trapped behind this monster. It is a horrible disease & it is really hard to watch someone you love suffer this way. But when you keep showing up for them, they don’t forget you. I think unfortunately what is all too common with this disease is the infected person is forgotten by their family. They stop visiting, stop calling, because it’s too hard for them. But life isn’t easy. You should show up for your loved ones, even in the tough times. Jane has been living in this home for nearly 3 years. I have visited every week. I wish I could say this was the norm for everyone living in the facility, but sadly the norm is that most rarely, if ever, have visitors. It makes me sad.