July 3, 2019

Lunch with Jane:

I never had a chance to post after my visit last week so I’m sharing the pics from that visit too.

I was actually early today. There is a guy in Jane’s house who is difficult – honestly, he’s a jerk. I didn’t know him before so I will blame the disease for his bad behavior. But it still annoys me. He was sitting at the front door when I walked in, trying to get out. I told him he couldn’t go out now because it was lunchtime. Luckily he didn’t fight me. But he did get in Jane’s space during lunch – something he’s done before. I called Emely for help. His daughter-in-law arrived when I was leaving today. I told her he’d been difficult earlier so she got on him for that. She comes to visit him most weeks when I am there. I’m not sure if she visits more often or if she’s on the same schedule as me – but she always brings him some sort of treat. It’s nice. So clearly he must have been a good guy before this horrible disease because his daughter in law clearly loves him.

Jane was very distant during lunch – eating out of habit. She reached out to hold my hand, but her eyes gave no indication she was present with me. I hate how this disease does that. I suppose I could understand why people say dementia causes you to forget people, but this isn’t my stepmom forgetting – it’s her not being present at all. There’s no light – no life in her eyes when she’s like this. Is it the disease building a wall between my stepmom & the outside world? Does she fell trapped when this happens or is it like she has left her body? I really don’t know.

We headed outside after lunch. There was a nice breeze so it was comfortable enough for us to visit under the trees. Both Jane & I prefer to visit her than the clubhouse so I was grateful she never got too hot. Once we settled in & texted my dad, Jane seemed to sneak out from behind the disease. She connected with me & smiled. She had life in her eyes. But she was also agitated. She couldn’t seem to get comfortable in her wheelchair & kept making faces & sighing. I definitely felt her agitation, but I couldn’t pinpoint where the agitation was coming from. She wasn’t hot – I checked often. If she was in pain, I could’t find where. She never seemed able to answer any of my questions about what was bothering her. These are the times I feel completely helpless. I asked her today why she was still holding on. She has no quality of life. Everyone who loves her has said everything on their heart. We’ve all said goodbye & given her the ok to leave us. Jane doesn’t have the ability to tell us goodbye or express things on her heart – the disease took the ability away from her long ago. I told her she can tell us once she’s passed on. She can visit each of us in our dreams & say everything she’s unable to say today. I don’t believe my stepmom is scared to die. I know she believes in god & believes in a place beyond this world. So why is she still holding on?

My dad & I disagree here. He says she’s still here because she’s healthy – other than the dementia. He doesn’t believe dying is in her control. I believe, when we are ready to die, we do. I’ve seen so many people die in the 3.5 years Jane has lived in her home & they tend to go quickly. It’s as if they make their peace & then the suffering quickly ends. So maybe Jane hasn’t made her peace yet?

This disease has taught me so many lessons. One being life is precious & you should never wait to tell someone how you feel. I think it’s made me quicker to tell people I love them. I tell my friends I love them & how much they mean to me. I try to always express the gratitude I feel in my heart. Luckily my friends love me too & don’t find me weird. Or maybe they’re just weird too! It’s also taught me not to waste my time on people who don’t matter. I don’t have patience for insincerity. I’d much rather spend my time alone than with someone who is fake or untrue. Man how I wish I had learned this lesson earlier in life! I wasted so much time caring about people who didn’t matter.

I have mentioned before how much I miss my stepmom. How I miss our conversations. But honestly, she’s still helping me. Even in her silence she’s still guiding me & helping me find my way. This disease is a monster & I would never chose to have this experience, but somehow my stepmom uses it to teach me. She & I have found forgiveness & love in this disease. I’ve had the chance to tell her everything on my heart. How often do you have a chance to say that? To feel you have complete closure & let the person go feeling only love?