August 8, 2018

Lunch with Jane:

My stepmom had a seizure around 5:30 am this morning. This is nothing new, but it’s been awhile since she had one. Typically she leans to her left after this happens, but for some reason today she was leaning towards her right. I had to help her adjust a couple of times in her chair during lunch because she was leaning so far to her right.

She was sitting at the kitchen table when I arrived & I immediately noticed her lean. That’s when Emely filled me in on the seizure. It had happened before Emely’s shift began but the night shift had witnessed it & let Emely know. Emely told me Jane had been alert all morning & was able to walk, but definitely leaning to the side. I sat down next to Jane & she looked deeply into my eyes & smiled. She reached out for my hand & pulled it close to her. She didn’t want to let it go. I think the seizures always scare her a bit.

I usually have the cupcake in my purse when I arrive. I told Jane I had another new flavor for her to try. At first, she didn’t seem interested. If you follow her story, you know that’s not good – she loves her cupcake. I think the seizures take so much out of her, it takes her longer to process everything. Normally she speeds through lunch to get to her cupcake but today I think she needed a few minutes between lunch & her treat. I simply sat with her, holding her hands. I waited a minute or two & then asked if she was ready for her cupcake. This time she responded & smiled. I told her I needed my hands to get the cupcake & open it for her, so she let go. But once I had the cupcake out of the box & sitting in front of her, she reached for my hand again. This was a messy cupcake today & with Jane leaning so much it was a bit more challenging for her to eat so I needed both my hands to feed her the cupcake. I placed her hand on my leg & asked her if she could hold on to me while I fed her the cupcake. She said ok. She seemed to enjoy the cupcake, but was very quiet.

It is not too bad outside today & I thought perhaps Jane would enjoy sitting under the trees again like we do when it’s cooler outside. I asked her if she wanted to walk (it’s not far) & she said yes. It took a couple of tries to get her standing up & solid on her feet. We headed outside & I quickly realized that was a mistake. We made it about 10 feet from the house when Jane’s breathing became very labored & I honestly was worried she was going to fall. I stepped in close to her right side & wrapped my arm around her back to stabilize her. She leaned against me & put her head on my shoulder. We had to just stand there like that for a minute or two before Jane seemed able to turn to go back inside. I was concerned. There is an incline back to Jane’s house & on a good day it causes challenge for her. Today it was very hard. I did my best to take on as much of her weight for her as possible without causing her to fall. Luckily we didn’t have to go too far before Emely saw us out the window & rushed to our aid. By having someone on each side of Jane & providing her support to walk, it seemed ok for her. We got her inside & sat her down in one of the big chairs she likes. Emely pulled a chair up next to it for me & then went to get a pillow for Jane. I can’t tell you enough how grateful I am for Emely.

One of the other residents, Myron, wheeled over & sat next to me. He’s a nice guy & I always chat with him when I visit Jane. He was watching Man on Fire with Denzel Washington. Jane held my hand tight, but slept most of the visit. She didn’t want me to leave her even though she was sleeping, so I stayed with her my usual time. It’s the least I can do. When I had about 15 minutes left, Jane opened her eyes & smiled at me. She was trying to engage in conversation even though it was very difficult for her. She kept yawning – which is honestly not something Jane normally does. I don’t know if the seizure affected a different part of her brain or if something else was going on. I’ve gotten used to not knowing & just appreciating the time with my stepmom.

When I left, Marianna was outside in the courtyard waiting for her cigarette. You’ve heard me talk of her before. I walked over to say hello. She asked about Jane & was saddened when I told her it was a bad day. Marianne began to talk to me of death & how horrible it is to just linger on. She asked if I wished for a swift death or if I felt this was better for Jane. She didn’t wait for me to answer – I don’t think the question was really for me, but a question Marianna is asking of her life. She told me to always live my life to its fullest because we never know what the future holds. I told her I agreed & I do my best to honor this. I also told her I do not wish to linger on like this in my life so I work really hard to take care of my body in hopes I live a long, full life. I don’t know if any of us wish to linger on. I assure you this is not the life Jane foresaw for herself. And I know she would never want her suffering to cause pain to anyone she loves.

Dementia is such a horrible disease of unknown. It slowly steals your life away from you. There are days I hope Jane has a massive seizure which quickly takes her life. And then I feel guilty for even thinking that. I just want her suffering to end. I believe in an afterlife. I believe our souls continue on after they leave our body & no longer have to feel the suffering of this human body. I believe our souls will live future lives so perhaps that makes it easier to wish her suffering to end. But I also know, I will miss her more than words can describe so selfishly, I’m not ready to let her go. I hate this disease!!