Vesuvius and Me

 

Vesuvius and Me: A Caregiver's Heart Under Pressure

I have been to the emergency room twice this week. Both times for the same thing: my blood pressure spiking into crisis territory, high enough to demand CT scans, an MRI, blood work, IV medication, hours of monitoring while machines beeped and doctors asked me, gently, if I was under a lot of stress.

I almost laughed.

I am nearly 71 years old. My daughter is nearly 42. I am the person responsible for the care of my most loved daughter who is now a grown woman, and experiences a developmental disability, a fierce and fun personality, and a nervous system that can go from calm to eruption with almost no warning. I have spent most of my life being ready for that eruption. My body, it turns out, has finally decided it can't be ready anymore. It is telling me, in the clearest language it has, that something has to give.

The Job No One Sees

People who don't live this life imagine caregiving as something you clock in and out of. Get her to day program, pick her up, make dinner, done. What they don't see is that the job never actually ends, even on the days I'm not physically present.

I can be out having an evening of fun — coffee with a friend, a walk, five minutes of feeling like a person instead of a dispatcher — and my phone will buzz. Someone else was sitting in her preferred seat at Chipotle. She's yelling--LOUD. Her supporter doesn't know what to do. I'm not there. I didn't cause it. I can't fix it from wherever I am. But I am the one who gets the call, every time, because I am the one who is ultimately responsible when a system — any system, any person, any program — doesn't know what to do.

Day program staff call me. Direct support staff call me. When another caregiver doesn't know how to de-escalate her, when someone misreads a demand-avoidance response as defiance instead of the neurological reality it is, when the wheels come off in some ordinary public place over something that looks small from the outside but is enormous from hers — I am the one who is supposed to already know what to do. And usually, I do. Decades of this have made me skilled in ways I never asked to be skilled. But knowing what to do doesn't mean it costs nothing to do it, over and over, indefinitely.

Sometimes, when a supporter calls to tell me about their difficult day with my daughter, what I actually want to do is scream. Not at them. Not at her. Just scream, into the nearest available silence, because I am so tired of being the last line of defense. I want peace. Just a little. Just enough to remember what my own nervous system feels like when it isn't braced.

Living Near the Volcano

I've started thinking of the unpredictability like Vesuvius — dormant, then not. And I don't think she knows any better than I do when it's coming. She is always sorry afterward. She promises, and she means it, that it won't happen again. But meaning it and being able to deliver on it are two different things, and I don't think she has the tools yet to close that gap, no matter how much she wants to.

I try to hold onto that when I'm at my most depleted: this is hard for her too. Harder, probably, than it is for me. I get to leave the room sometimes. I get to have my rare afternoons, interrupted as they are. She has to live inside a body and a brain that erupt without her permission, and then face the aftermath — the regret, the apologies, the knowledge that it will probably happen again — every single time. Parenting her has never been a breeze. I imagine being her is a great deal harder.

I've Done This Before

This isn't new to me, this business of never being able to fully rest. From the time she was three months old until she was seven years old, she had uncontrolled seizures — the kind that fit the Lennox-Gastaut Syndrome pattern, thirty to a hundred seizures a day, sometimes a seizure lasting 1-3 hours.
I was ready for them awake and ready for them asleep, for years, because there was no version of not being ready. You don't get past those days. I mean that literally — the hyper-vigilance doesn't switch off just because the seizures eventually did. It just found a new thing to attach itself to.

She is nearly 42 now. That means I have been on alert, in one form or another, for almost the entire length of her life. So when I say I am always ready now, for a different kind of unpredictability, I mean it the same way. My nervous system learned, before she could walk, that rest was not a safe assumption. It has never fully unlearned that lesson. I don't think it's a coincidence that the body holding all of that vigilance for nearly seventy-one years is the one now sitting in an ER bed, being told its blood pressure is dangerously high, for the second time in a week.

What My Body Is Telling Me

I don't have a tidy ending for this. I'm still in it — still trying to get my blood pressure under control, still the person everyone calls when things go sideways, still loving my daughter fiercely while being exhausted by the vigilance that love requires. What I do know is that the connection between the two is not a coincidence, and it's not something I can think my way out of. A body that has spent nearly fifty years on high alert does not calm down just because it's asked to.

If there's a reason I'm writing this down, it's this: if you are a caregiver reading this and recognizing yourself in it — the phone that never really lets you rest, the responsibility that follows you everywhere, the body that is starting to protest in ways you can't ignore — please don't treat your own crisis as background noise to everyone else's. Mine sent me to the ER twice this week before I let myself take it seriously enough to write this. Don't wait as long as I did.

I want peace. Just a little. Not the permanent type. I'm still learning how to ask for it, and even harder, how to actually take it when it's offered.