Recently, Mom and I had some time to kill waiting for a prescription to be filled, so went to Stop & Shop to pick up something for dinner. Mom has her groceries delivered (hooray for PeaPod–though she does not love recent changes to your website, yo), and hadn’t been inside the grocery store for years. She was gobsmacked at how big the place is, and couldn’t manage walking the aisles. Happily, there is a Starbucks there as well, so we got coffee and sat down for a bit.
People familiar with LBD will know what I mean when I say that you never know who your loved one is going to be on any given day. On this day, I had Nice Mom. People walked by as we sat, and she smiled at them, and they smiled back. This struck her as amazing, that people seem so nice, and so happy to be smiled at. It was as if she’d never noticed that before.
Over the years I’ve learned not to talk about myself with her, nor about Aaron or any of my friends. We talk about Robin and Josie. About her granddaughters, she doesn’t twist things around, or criticize, or inject snobbish or haughty opinions. She just delights in their growth and accomplishments, or their humor, or any of their stories. So, as we sipped our coffees, I babbled on about how this or that recent event revealed some aspect of their personalities.
Last fall’s kitchen incident showcased Robin at her best. I told Mom the story from our perspective, as we came to her house thinking we were there for dinner and to fix the answering machine, but found a pretty impressive mess on arrival. I told her how scared we were, and how Josie was upset to the point of tears, and how Robin had taken care of her and handled things beautifully while I pieced together what had happened. Mom hadn’t known any of this.
I told her that Dad had been beside himself and fixated on getting her medicine adjusted as a “solution.” I reminded her that when she was diagnosed, I read everything I could find about LBD, but that there is no way for Dad to do that. I’ve told him things, but he can’t do his own research. Blindness has him quite literally in the dark. He seized on medication as the problem, but hadn’t quite come to terms yet with the progressiveness and incurability of her illness. Medicine is great at keeping some of the symptoms at bay. It won’t work forever.
I got a lot across in a very short time. Didn’t lecture, didn’t preach, didn’t rub her nose in it… just told her how it is for us, through this one incident.
She listened. Such a simple thing, but it almost never happens. She really listened. She didn’t get hostile, paranoid, defensive, or mean. She seemed, for the first time, to consider what the changes happening to her feel like for all of us. That they terrify her husband. That her grandchildren are not just aware, but coping, in their own ways. And–maybe–she came to appreciate a small fraction of what it means for me, too. That there is a real emotional cost to the increasingly managerial role I have taken in their lives. That I keep my phone within reach at all times. That there is never a day I pull into her driveway without a little nugget of fear in my gut. And, importantly, that I need her help, while she still can, to figure out the next step.
Then I listened. She told me what it feels like to have a malevolent voice in your head threatening gruesome violence and belittling your every attempt to overcome the fear of it. She told me how every day, the voice tells her it will kill her on the way to the mailbox, and every day, she tells it “fuck you” and goes to the mailbox anyway. She said that she doesn’t tell my Dad that it’s become a triumph of will just to get to the mailbox and back, but that she asks him to wait at the head of the driveway while she goes and to hug her when she gets back, and he does, and he doesn’t ask why, and doesn’t make her feel stupid for needing it. He just does it, because it’s what he can do.
It was good. Good to talk, good to hear, good to have coffee with my mother as if we were friends sharing parts of our lives. I’m going to need that Starbucks again.