Decisions

I made every decision I made with the knowledge I had at the time. I need you to read that again. Not because it's an excuse. Because it's the truth that every caregiver needs to hold onto when the second-guessing starts, and it will start. It starts in the quiet moments, the ones you finally get after months of running on empty. It starts when someone asks why you didn't do it differently, or when a system finally comes through six months after you needed it and you think: where was this then?

My dad spent his life showing up for other people. He was a counselor for 40 + years who knew how to sit with people in the hardest moments of their lives and help them find a way through. I followed in his footsteps and became a mental health counselor. When it became his turn needing someone to show up for him, I said yes without hesitation. What I didn't know, what nobody told me, was that saying yes to caregiving means saying yes to an unending series of decisions. Medical decisions. Financial decisions. Logistical decisions. Emotional decisions made at 2am in a hospital hallway while you are simultaneously grieving the person standing right in front of you. And you make them in a mindset of stress.

Here is what that actually means. When you are living under sustained stress, your brain is not operating the way it does on a normal Tuesday. Your nervous system is in a state of chronic activation. The part of your brain responsible for reasoning, for weighing options, for thinking past right now, is being overridden by the part that is just trying to survive the moment. This is not weakness. This is not poor judgment. This is how human brains are wired under prolonged stress. The prefrontal cortex, the part that helps you think clearly, plan ahead, and regulate emotion, gets crowded out by a system designed for short-term survival, not long-term decision making. Caregivers are not making decisions from a place of clarity. They are making decisions from a place of neurological depletion. And nobody tells you that. Nobody accounts for it. You are just expected to figure it out and get it right.

There is a particular kind of exhaustion that comes with caregiving that I don't think has a name yet. It is not just tired. It is the accumulated weight of being the person who holds everything together for someone else while quietly setting down pieces of yourself to keep up. Your savings. Your schedule. Your sleep. Your health. Your sense of the future you thought you were building. You set them down one at a time, so gradually that you don't always notice what you've put down until you reach for it and it isn't there. And still, the decisions keep coming. When everything feels urgent, waiting is its own kind of impossible.

I learned this firsthand. The systems that exist to help move on their own timeline, a timeline that has nothing to do with what is actually happening in your home, in your body, or in your bank account. You apply. You wait. You follow up. You wait. You make the best decision you can with what you have right now because right now is all you have got. This is the reality of caregiving in America, and we are not talking about it honestly enough.

I have gone back and examined the decisions I made about my dad's care more than once. Not because I regret them, because I am human and that is what we do, we reflect. What I found every single time was the same thing. I did what I knew to do with what I had. I made the call that made sense in that moment, with that information, at that level of exhaustion, with those resources available within the context of our situation. That is the whole truth. What I wish I had, what I want every caregiver to have, is better information before the crisis hits. Not a pamphlet. Not a hotline number on a refrigerator magnet. Real education about what caregiving actually requires. Real frameworks for the grief that starts the moment you realize your person is changing and does not stop when they are gone. Real tools for the decisions, so that when you are standing in that hallway at midnight you are not starting from zero.

What I wish I had was a way to slow the moment down long enough to actually see it clearly. Because the decision is still yours to make. But there is a difference between reacting and deciding, and that difference matters. It starts with noticing what you are telling yourself in that moment. Not what is happening around you, what you are saying to yourself about it. That inner voice running the commentary is making decisions too, and it is usually working from fear and exhaustion, not from fact. Then you trace where that thought came from. Most of what feels urgent and certain in a caregiving crisis is connected to something older, an experience or a fear that taught you what this kind of moment means. When you can see that connection, you stop reacting to two things at once. Then you ground yourself in right now. Just the facts of this moment. Not what happened last time, not what might happen next, not what you are afraid is coming. What is actually in front of you today. And then you decide. With all of that visible, with your feet on the ground and the noise quieted down, you ask yourself what is actually true and what you want to do about it. That is a decision made from your whole self, not just your survival brain. And that is the kind of decision you can stand behind, even years later, even when it was hard.

My Business Insider story captured the financial cost of those five years. What a single article cannot hold is the full arc, the way that journey, as hard as it was, led me directly to my purpose. Caregiving grief is not just what happens after someone dies. It is the accumulation of every loss, every change, every transition from the moment you say yes to the moment you figure out what comes next. It is one of the most significant and least supported experiences a person can go through, and we have to do better. More education, more honest conversation, and we have to stop treating caregiver breakdown as a personal failure when it is a systemic one.

We could probably do better. Not because caregivers aren't trying, but because the information about what the options actually are is not reaching people in a form they can use. And that requires better systems, systems that account for the reality that a caregiver does not have extra bandwidth. There is no room for a research project in the middle of a crisis. What caregivers need is the facts, short, simple, and clear, delivered in a way that meets them where they are, so they have what they need to make the decision in front of them. That is not too much to ask. That is the baseline. And until we build toward that, caregivers will keep doing the best they can with what they have, which is exactly what they have always done. We just owe them more than that.