October 17, 2018

Lunch with Jane:

Today the disease was winning. Jane was sitting at the kitchen table when I walked in, staring off into space. She seemed very far away, like she was trapped in her thoughts. It took me a couple of minutes to connect with her. But once she was present, she looked deep into my eyes & smiled.

I think this is why people just assume those with dementia don’t know their loved ones. Because they are trapped behind this fog of a disease & they aren’t able to connect. I’ve found with Jane if I stay present & stay with her, eventually she will bust through the fog & connect with me. But she may not be able to hold the fog, the disease, at bay for long. That was the case today. She would wander in & out of presence with me during our entire visit.

I brought Jane her favorite cupcake today – lemon. When she finished eating it & we connected I asked her if the cupcake was yummy. She smiled. So I said is it still your favorite? She smiled & childlike grin & said yes. While she was still present with me, I asked her if we should go sit under the trees to which she said yes. I said ok then – how about you walk there? She said no. But today I pushed her. I don’t want her to forget how to walk. I don’t want her to be wheelchair bound. So I told her we were going to walk, but I would hold on to her tightly & we could take our time getting to the trees.

I think Jane understood it was important for her to walk, because she stood easily for me & headed outside. She held onto my hand tightly & I placed my other hand behind her back to help steady her, which she seemed to appreciate. We walked slowly & stopped often for a short break but we did make it to the trees. I cleaned off a chair for Jane & helped her to sit. Sitting in chairs are hard for my stepmom. I don’t know why, but something about gaging where to sit in the chair is challenging. There is always a risk she will sit too soon & miss the chair, so it takes diligence on my part to make sure she is safe. The last thing we need is Jane falling & breaking bones.

Jane is still able to move herself around in a chair to get comfortable, but it startles her if the chair moves, so I always hold her chair steady for her until she is sitting comfortably. Only then will I grab a chair for me & pull it close to her. Like I mentioned last week, Jane prefers to sit in front of me versus beside me so she can look me direct in the eyes when we chat. She needs that eye to eye contact to stay connected to me & fight off the dementia. Some days, like today, its harder for her to fight off the disease. Man do I hate this disease.

Jane & I chatted for awhile about my race & my trip over the weekend, but she was tired today. She also had the tremors off & on. I told Jane it was ok, she could rest during our visit if she wanted. She squeezed my hand tight & refused to let go. I believe this is why my stepmom is still with us today. She fights & holds on tight, not yet ready to leave this world. I know she fights hard – we talk of this often. I also know she is growing tired of the fight. It is taking its toll on my once vibrant & stubborn stepmom. I give her permission every time I see her to stop fighting. I tell her I will miss her, but I don’t want her suffering for me. I also tell her I know I will see her again, after she leaves this world. I know Jane believes this too. While I never shared my stepmom’s religion, over the years, she & I spoke of her beliefs. I know she believes in god & believes in a world beyond this one. She may not believe everything her religion taught her, but she believes enough. I hope this belief provides her peace & allows her to let go & stop fighting when she is ready. Not when my dad is ready; not when I am ready or my brother or sister, but when Jane is ready. This is her choice & we will all figure out a way to say goodbye, when the time comes.

When the smokers came out, I told Jane it was time to head back inside. It took some coercion to get her to stand. It’s nice outside & she was enjoying the quiet of our visit. We walked very slowly back inside, again stopping often for a short break. I got my stepmom inside & led her to a chair to sit. She was tired & it was a struggle to get her to the chair. She misjudged how far away the chair was & slowly slid to the floor. I had a tight hold on her so she did not fall, but rather sat on the floor instead of the chair. However, once she was on the floor, I was not able to get her back up. It actually took 3 of us to get her standing back up. Once she was up, Emely helped me get Jane into another chair. I made sure she was settled & comfortable before I left. I kissed her on the forehead & said I love you. Jane grabbed my hand & squeezed it tight before letting me go. That’s her way of saying she loves me too.

I hate this disease. I hate that it no longer surprises me to see the disease winning. I hate that we have more bad days than good days. I hate feeling so helpless. Yet I still find myself feeling grateful for the time I get with my stepmom. No matter how hard the visits may be. No matter how bad I want to scream & yell at this monster called dementia. I will keep showing up for Jane every chance I get. I will hold her hand & comfort her. I will tell her I love her & share my life with her because it makes a difference. Everyone wants to feel connected – to feel like they belong. Even those battling a terminal disease. Don’t ever forget that.