Have you ever felt like caregiving is something you carry in your body—every thought, every schedule, every silent worry—until even your breath feels borrowed?
That’s how I felt when I became the sole caregiver for my family member who lives with both autism and schizophrenia.
They’ve come a long way—medication helps, therapy helps—but daily life still asks for more hands, more patience, more structure than one person always has to give. For a while, they shared care with a long-term partner. But after the relationship ended, the rhythm of caregiving shifted, and I found myself stepping into every gap. Suddenly, every routine—from meals to hygiene—was mine to navigate.
At first, I told myself, You’ve done this before. You’ll manage.
But soon, one truth became impossible to ignore: caring for someone capable but inconsistent is its own kind of puzzle, especially when it comes to hygiene.
They can shower, brush their teeth, and manage most self-care on their own. But without close direction, they skip steps or rush through them. The result is physical discomfort—and emotional unease. When I step in to guide them, they feel better, brighter, and cleaner. But the cost is intimacy they don’t want and exhaustion I can’t always afford.
They don’t want me hovering in the bathroom, and I don’t want to be there either.
But how do you help someone who needs support they don’t want to need?