January 23, 2019

When I arrived today, Michelle stopped me. She’s the gal who does the hair for all the residents. She wanted to talk to me about Jane. Michelle is at the facility on Tuesday’s & Wednesday’s for a few hours so I see her most weeks and we chat. She definitely cares about Jane & I know Jane really likes her too. Michelle wanted to let me know she had cut Jane’s hair yesterday afternoon & trimmed her eyebrows. She shared Jane was really tired – much more so than usual. I asked her if Jane was leaning to one side because typically when she’s really tired like this it means she’s had an episode. Michelle said she seemed to be sitting ok – just really struggled to stay awake & didn’t really want to be bothered (which is not normal for m stepmom). I thanked her for her concern & said I’d keep a close eye on Jane today.

When I arrived to Jane’s house, she was sitting at the kitchen table. She no longer gets out of her wheelchair to sit at the table but simply eats while sitting in her wheelchair. I noticed my stepmom was leaning towards her right in her chair. She didn’t smile when I sat next to her nor make any attempt to engage with me. I took her hand & squeezed it while I looked into her eyes. Finally she made a connection & gave me a semi smile. She was distant & trapped in her head – this was clear.

I fed Jane her lunch & she ate methodically as if she were simply on auto pilot. As long as she eats I am satisfied. I always do my best to get a glass of water in Jane during lunch so I asked her to drink her water before her cupcake. It’s not always easy for my stepmom to swallow water. It’s funny – I always think if she eats fine she will drink water fine, but it’s a different sensation & the disease seems to make drinking water more challenging. I got her to drink half a glass & then I opened her cupcake. Chocolate raspberry was the flavor. The cake looked very moist & there was also a raspberry filling in the middle. Jane very much enjoyed her cupcake & was quick to eat every bite. I’m glad the cupcake seemed to be connecting with her today.

When we were done with lunch, I grabbed a blanket for Jane so we could head outside. It was pretty nice outside so we chose to sit under the trees for our visit today. I tried talking with my stepmom – told her about everything going on in my life. She listened intently, but she was unable to respond to me. No real smiles today, no hand squeezes, no attempt at words. It was a rough day.

The rough days are hard. They wipe out my energy as I leave feeling emotionally drained. I hate watching my stepmom suffer. I hate that this is her life. I will continue to show up for my stepmom as long as she is still breathing – but man do I wish her suffering would stop. This is not the life she wanted. So why does she continue to hold on? I believe in life after death. I believe there is a beautiful world on the other side – a world where she is no longer trapped by this horrible monster of a disease. And I believe she will stay connected with all those she loves. So why does she continue to hold on to this body – to this life? I will miss her when she’s gone – I know that. But I refuse to be selfish & ask her to hold on simply because I will miss her. Let’s be real – I miss her already. I have missed her for a long time. Dementia stole my stepmom from me many years ago. I vibrant, feisty woman I know has been gone for nearly a decade. And that woman would absolutely not want this life.

Appreciate everything you have in life – every day. You never know when that will be taken from you.