I kind of lost it this morning in the car on the way to work. Sometimes the hugeness of what we are facing gets the better of me, and I forget to “keep it in the day.”
Because when you are living with someone who has Alzheimer’s, you have to – sort of – live in the moment, just as she does. My mother-in-law doesn’t have much conception of a future beyond a couple of days, whereas I have a kind of reverse struggle: I can’t pull myself out of months from now, or years from now. How are we going to manage the holidays again this year? How are we going to handle telling her she can’t live in her house anymore? What are we going to do with her things? What if I have to deal with this again in another 20 years with Kevin? What if it happens to me?
Sometimes I feel like we’re totally fucking alone in this, even though if I took a deep enough breath and stopped the panic spiral, I’d know that’s not true. My mother-in-law has a nurse that looks after her now in the daytime. She has friends who take her to lunch and to get her hair done. We have family, and resources. We’re not the only ones who are living this way — with someone who looks like the person we love, occasionally still acts like the person we love, but is slowly and painfully becoming…..not that person anymore. I know this.
We have strings of days still where she’s mostly okay. She’s not the conversationalist she used to be, but she’s cheerful and hell-bent on getting stuff done. Cleaning windows. Folding laundry. And then, just as we’re sort of getting used to that, there’s a precipitous dip in mood, or ability. And no matter how much we grasp that this is the nature of Alzheimer’s, it doesn’t make it any less traumatic.
I can only liken it to living in a house that gets robbed every couple of months. You know it’s going to happen, and you can’t control what you’re going to lose, and moving out is simply not an option. So you stay on, and you hope the next thing that gets stolen isn’t something important.
And all the while, I feel like we’re not doing enough. There are medical appointments, legal appointments, documents that have to be printed and signed and scanned and delivered and emailed so that all of our Alzheimer’s ducks are in a row, and just when we think we’ve got a grip on it all, someone asks us about this thing, or that option, and why aren’t we doing that? We really should be doing that. Can’t believe we’re not doing that already. What’s the MATTER with us?
So I broke this morning. I sat in the car in the parking garage and sobbed, and I felt HORRIBLE, because Kevin was actually in a pretty good mood, and I hate thinking that I’m just one more problem he has to deal with. Which brings me back to my standing, passport in hand, waiting for the next flight to Worst Case Scenario Land. You know, my usual position.
And I can’t be there. The more time I spend there, the less time I’m able to spend here, today, in this moment. What can I do right now? I’m doing it. I’m saying that I’m scared, sad, and tired. And then I’m going to figure out what I can do about dinner. Because Kevin needs me to make those decisions. Because as scared as I am, as sad and tired as I am, the fact is that Kevin has it much worse. This is his mother. He is bearing the brunt of all of this. NOT asking him, “What are we gonna do about dinner tonight?” is the least I can do.
I hate when I get like this. I don’t like being so frightened, and angry, and yet I can’t pretend that I’m NOT frightened and angry. I feel like every time someone asks me how we’re doing, I’m not really supposed to tell the truth. Likewise, I feel like every time people say “let me know what I can do to help,” I can’t tell them. I can’t tell them, because I DON’T KNOW. We’re dealing with things as they hit us; we very seldom are able to anticipate what kind of help we need, beyond the occasional couple of “days off.” So the default response in both cases is usually just: “Okay.”
I can’t expect most of you to understand what this is like. And I’m aware that, as I go back and read through what I’ve written, I sound like I’m probably a complete wreck. A couple of posts ago I was going on about horror movies, and now I’m talking about crying in the car. What can I say? This is just how my life is right now. In another day or so I’ll be griping about how stupid fuckin’ Thought Catalog is again, or planning my Billy Squier tribute band. Ebb and flow. Like everybody else who is going through something.
Too, I don’t want to give the impression that I’m fishing for canonization here. I know we’re doing the right thing, but I also know that there are countless people doing the exact same right thing. It’s a struggle for me primarily because – if I’m going to be brutally honest with, and about, myself – my default response has always been to avoid discomfort and pain at all costs. I am, after all, an alcoholic, and while I have been sober for over 11 years, that instinct to run away and hide is still there.
And so we go. We hope it’ll be a good day. We carry on if it isn’t. We get upset and maybe we cry in the car a little bit. We ask for help.