What caregiver burnout is really about — and what you can do about it

There’s a moment many Huntington’s disease (HD) caregivers can describe with uncomfortable clarity: the day you realize you’re not just helping anymore — you’re holding everything together.

At first, it looks like small adjustments. You drive to appointments. You repeat yourself a little more often. You quietly take over the bills because it’s easier than arguing about late fees. You learn to read the room before you speak, because you can’t always predict what version of your loved one will answer back.

And then one day you hear yourself say, “I’m overwhelmed,” and it doesn’t feel like a complaint. It feels like a fact.

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Caregiver overwhelm in HD is rarely about one big breaking point. It’s about the steady accumulation of tasks, emotions, decisions, and vigilance. It’s the way your nervous system stays braced even on “good” days because you’ve learned that moods can flip quickly and plans can collapse without warning. It’s living in a state of alertness for so long that you forget what calmness feels like.

Burnout has signs, but caregivers often talk themselves out of noticing them. You tell yourself you should be able to handle this. You tell yourself other people have it worse. Meanwhile, your body is sending signals: irritation that comes faster than it used to, trouble sleeping even when you’re exhausted, brain fog, a numbness that scares you, or snapping over something small and then drowning in shame. Burnout isn’t a character flaw. It’s a stress response. It’s what happens when the demands exceed the support.

And then there’s fear and grief, the kind that doesn’t show up on a calendar but lives in your chest. Fear of the next symptom, fear of a fall, fear of an outburst in public, fear of what’s coming. Grief not only for what you’ve lost, but for what keeps changing. Caregivers grieve while still performing. There isn’t time to fall apart because dinner still has to be made, medications still have to be sorted, and someone still has to answer the phone.

Exhaustion becomes more than physical. It becomes emotional and spiritual. It can make you feel lonely even when you’re not alone.

One of the most compassionate truths we can offer caregivers is this: You shouldn’t have to wait for a crisis to build a support plan.

Taking an honest inventory

Support planning doesn’t have to be a dramatic overhaul. It can start with an honest inventory. What drains you the most? What is nonnegotiable, and what could be shared, simplified, or supported? If there are other people in the picture, it helps to move away from vague offers like, “Let me know if you need anything,” and toward specific responsibilities.

When you’re always on alert, it helps to create small anchors that bring you back to the present. This isn’t about pretending everything is fine. It’s about giving your nervous system brief moments of safety so you can respond instead of react. Sometimes it’s stepping into another room and taking a few slow breaths before you answer. Sometimes it’s lowering stimulation because overwhelm can feed overwhelm. Sometimes it’s repeating one steady reminder to yourself in the middle of chaos: We can take the next step without solving everything today.

And then there’s caregiver self-care, a phrase that can prompt an eye-roll when your life is already too full. Caregivers have heard “take care of yourself” so many times it can feel insulting, like being handed a candle while your house is on fire. The truth is that self-care must be practical to be effective. It can’t require more energy than you have.

Real self-care might be sitting down while you eat. Taking five minutes outside to let cold air reset your body. Drinking water before you reach for caffeine. Texting one person who gets it and saying, “Today is hard.” Setting one boundary that protects your sanity, like stepping away when you feel yourself reaching a boiling point. It can also be professional support: counseling, a caregiver group, or a conversation with the care team about behavioral symptoms and what might help. Needing that support doesn’t mean you’re failing. It means you’re responding wisely to something that is genuinely difficult.

Caregiver overwhelm doesn’t mean you don’t love the person you’re caring for. It means you’ve been carrying too much for too long, often quietly. If you’re a caregiver reading this and you feel like you’re barely holding on, I want you to know this: Emotional survival counts. You don’t have to do this perfectly. You just have to keep finding your way back to what is steady, what is supported, and what helps you stay human inside a role that can easily consume you.

You are not weak for feeling overwhelmed. You are awake to the weight of what you’re doing. And you deserve care, too.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.