What happened when mom and I talked about her memory loss

We’re in the car on our way to pick up lunch to take it to a park to eat. We were in need of an outing. We’ve largely been home since returning from our out of state trip for my nephew’s wedding.

In fact, we were talking about the wedding. Rather, I was talking about the wedding. Mom said with a hint of sadness that she didn’t remember any of it. I said, I know, but I think that the newlyweds appreciated that she was there, and my sister and her family got to see her, and that was good.

I went on to tell mom about it, the whole weekend, from the time we parked the car in the airport parking garage until we got back in it five days later. I laughed because I had rose colored glasses on about the whole trip, but now that I was reliving it I could see more problems than I saw at the time. I don’t think that made mom feel any better about not remembering any of it.

Which is when the real conversation started. Mom wants to know what to do about her memory loss. She wants to talk to the doctor about it when we go next week. She wants to know what can be done to fix it.

Nothing. Nothing can be done. But that’s too blunt an answer, so instead I told her we can’t ask the doctor about it next week. The doctor doesn’t want to talk about it anymore. The doctor has already told us what we can do, she’s given us the highest dose of medicine she can, and she doesn’t want us to bring it up again. I told mom, we’re not talking to the doctor about this next week, period.

But maybe we’re going to see a neurologist. I hadn’t meant to bring that up to her until the moment we leave for the appointment. She won’t remember, but still, telling her information for which she has no previously set context confuses her. Hell, new information with previously set context confuses her. But I told her anyway. It’s an action we can take. It’s some hope. It’s something we can do rather than sit back and let the situation get worse without doing anything at all to change it. It’s an exercise in futility, just like talking to her GP about it, but it’s a thing we’ve not yet tried, so it still has that tiny bit of value attached. Maybe there are tests he can do. Maybe he can talk about new medications or treatments. Maybe he knows something the GP doesn’t.

Then I resorted to the only thing I had left in my toolkit. (I’ve got to get a better toolkit!) I told her, in the meantime, she’s safe. She has everything she needs. Everything will be managed and she doesn’t have to worry about anything. It’s taken care of.

“Yeah, thanks to you. You’re responsible for everything.”

I can see in my mind’s eye exactly where we were in the drive. The post office on the right. The quarry on the left. The sun fighting its way through grey clouds. And me facing my shame. I said, “It’s not like I’m complaining, mom. I’m not going around complaining about being here taking care of you. Yes, I could put you in a facility and walk away, never see you again. But I don’t want that. I think you’ll be happier at home. I think you’ll do better at home. I think you’ll be more comfortable at home. I think it’s best if you stay in your home. If you staying home means I have to be responsible for everything then I’m responsible for everything.”

We rode the last few miles to the park in silence while it slowly sunk in what I’d just said. “It’s not like I’m complaining…”. But I do complain, don’t I? I inwardly groan at her repetitive questions. I whine about having to do all the chores. I roll my eyes at her obsession about whether kids are in school or not. I grip the steering wheel harder every time she points out a school bus. I tune out her endless observations about the trees and the weather. It all makes me crazy and I want to scream.

I am here voluntarily. And I’m driven nuts by her dementia-related behaviors. Those two realities live together in a silent truce. They are not two sides of the same coin, they are fundamentally intertwined into our existence; all or nothing. I either have both or I have nothing.

Nevertheless, I did acquire a bit of self-awareness throughout the rest of the day. The next time I rolled my eyes at something she said I stopped for just a moment to question how helpful that act was to my mental health. Was rolling my eyes at her, inwardly groaning, or silently screaming the answer to the question she’s asked twelve times in a row actually helpful? I had to say no. In fact, giving into my disdain for her behaviors actually made me feel worse. That doesn’t mean I know better how to handle these situations. I don’t know the proper response to “What day is it?” that doesn’t include gripping the steering wheel and resisting the urge to scream. Maybe I’ll figure it out. In the meantime, I’m going to start resisting the urge to roll my eyes. I’m going to try to tune in rather than tune out. I’m going to remember that I’m here voluntarily, and I’m here because it’s best for her.

We were just driving to the park for lunch but we ended up in a whole other place in our relationship. She won’t remember any of it, but I at least learned that I’m making things worse for myself in the way I respond to her symptoms. She can’t grow but I can, and I hope I did that today.

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