April 19, 2019

Wednesday lunch with Jane:

Yet again, I am slow to share this week’s visit. I left Jane & went back to my life – not feeling inspired to write about the journey. It’s getting harder for me to write. I want to leave this all behind. To forget about the pain. This morning, this first picture was posted in one of the dementia / Alzheimer’s groups I am part of on facebook. It spoke of all I feel.

I laid in bed this morning wondering why it’s become so hard for me to share my visits with Jane. She is deteriorating & this feels like the final stages to me. Most days, she’s not really there. She just sits there, staring at me. There’s no light in her eyes. Her body shakes & it often seems challenging for her to sit comfortably. A glimmer of light will appear & she will smile at me. But as fast as the light appeared, it disappears. I do my best to use those moments to talk to her about important things. Things I really need her to respond to. Most of my visits, I simply talk about everything going on in my life & it’s ok if she doesn’t respond. But sometimes, I really miss my stepmom. I really want her counsel. We had a different relationship than I have with my mom. Jane has a different perspective on me & sometimes, I NEED her words. But those words have long been gone.

I wondered this morning if I don’t want to share because it’s easier to forget. It gives me space & distance. Am I building up my wall so it doesn’t hurt so bad when Jane dies? Is it easier for me to pretend like that time isn’t approaching? I often bed my stepmom to stop fighting because I can’t stand the idea of her suffering for us – her family. But am I really ready to let go of her? To say goodbye knowing I will never feel her squeeze my hand again? I have no control over when this time comes. I don’t know if she will die surrounded by her loved ones or if she will pass quickly alone. Perhaps that is where the real challenge lies. I have no control over any of this. I know I will be ok. Our family will rally together & we will celebrate the life of our stepmom, mom, wife & friend. We will always have her love & strength within us. It’s this damn in between time that’s really hard.

So I do the best that I can. I sit with my stepmom & hold her hand. I talk to her about my life & she listens. I make sure she knows she is loved. And when she has those glimmers of light, she lets me know I am loved too.

This week we talked a lot about running. I have a big race coming up & the Boston Marathon was Monday. I shared some highlights & some inspiring stories of the athletes who ran Boston. And then we spoke of New York. Long before I ever believed I would become a marathoner, I told Jane if I ever did feel inspired to run 26.2 miles, it would be in New York. She loved that idea & agreed it would be a great place to run a marathon. A year ago, I learned the Alzheimer’s Association was a top charity for the New York Marathon & it planted a seed in my running mind. As I’ve found a love for the marathon, I’ve set the intent to run the 6 World Major Marathons. I’m running Berlin this fall – it will be my first. I intend to run London & NY in 2020. Jane & I have talked about this as I have mapped out my goals. This week I reached out to the contact for the Alzheimer’s Association about running with their team in 2020. She gave me all the info needed. I asked Jane if she would like me to run for the Alzheimer’s team in her honor. She smiled & said yes. I’m grateful to have this moment with her. For her to know I am running for her & for her to give me her blessing. I know it may sound silly, but somehow it gives a new purpose to my marathon training.

I hate this damn disease. I hate how helpless I feel. I hate watching my strong, stubborn stepmom suffer.