July 10, 2019
Lunch with Jane:
The disease was winning today. For the majority of my visit, Jane was distant – not there. Only a couple of times did she look deep into my eyes & connect with me. She would smile – the genuine kind of smile that also lights up her eyes. But the rest of the time her eyes were dark & cold.
You can say what you want about my stepmom – I’ve experienced her wrath first hand many times. But she was always so full of life & tenacity. She went after what she wanted & never allowed anyone to hold her back. If you got in her way – well – you’d experience that wrath I mentioned. It’s really hard for me to reconcile the stepmom I remember with the woman who sits before me. I know she’s still in there – somewhere. She’s just trapped by this monster we call dementia. I promise it’s her tenacity & love of life that has kept her with us this long. When I began sharing our story, I never anticipated I’d still be sharing our story 3.5 years later.
I do my best to bring light into Jane’s day. My way of doing this is talking to her about my life. As I’ve mentioned before, I talk to her like I’ve always talked to her. I share the same things in my life I’ve always shared with her. I ask her opinion for the same things I’ve always asked. Only now I have to guess at her answer. I used to see a light in her eyes when I’d talk. That’s gone – dementia stole it. She used to smile at me, hold my hand & squeeze it. She used to hug me. She used to tell me she loved me. She still tries to find a way to connect with me each visit & let me know she loves me, but man do I miss her. I miss her really loud laugh. I miss her advice that I didn’t want to hear. I miss the sound of her voice. I miss her so much – yet she still sits before me. It’s an odd feeling. And one I hope you never have to personally experience.
Jane was leaning to the side badly today. That usually means she’s had some sort of an episode. Whether it’s a stroke or a seizure we can’t say – but something happens inside her brain & it causes her to tilt to one side for a few days. I noticed she had a bruise on her hand too. It almost looked like she’d had an IV in her hand, but I don’t know any reason that would be the case. Perhaps she hit her hand on the edge of the dresser? I also noticed Jane was super gassy today. While we were sitting under the trees listening to the birds, she made this horrible face (like little kids when they poop) but she was only tooting. She also kept burping. I mentioned it to Emely when we went back inside. She said Jane had not pooped yesterday. This may be TMI so skip if you don’t want to hear – but Emely told me Jane always poops right after her shower but yesterday she did not. She only gets a shower 3 days a week – so I asked Emely if that meant she only pooped 3 days a week. To which Emely said, to the best of my knowledge, yes. But she used to poop every day right? Emely said yes. Nothing has changed with Jane’s diet. She still eats the same amount of food & same type of food she has eaten for the last 3.5 years. My assumption – it’s part of the process of her body shutting down. Emely agreed most of the residents are like Jane in their bowel frequency & this is what she sees as their disease progresses. So I guess this is one time I will say the disease shows mercy – in the sense it’s taken away Jane’s ability to understand the discomfort of constipation.
We don’t really understand fully how the disease impacts the bodies of its victims. No 2 victims have the same path. So it’s hard to know everything Jane is going through & know what she understands or doesn’t. Our best guide is to watch her for discomfort. When she feels physical pain, she will react. She will winch or sometimes say ow. If you watch her face, you will also know as well. When she is blank & cold, she isn’t feeling anything. I can’t tell you that’s because she has no pain – she merely does not have the ability to feel the pain. Most days it also means she doesn’t feel the emotional pain. She still feels love for her family & close friends. But I don’t believe she feels the pain of our absence when we aren’t with her. At least not most of the time. I do believe during those rare lucid moments she does feel the emotional pain of all this disease has stolen from her – stolen from her loved ones. Gratefully – most of the time that burden is up to us to hold. A burden each one of us will lovingly take for as long as our mom & wife is here in this world with us.
I hate this disease.
