Inventing words for caregiving experiences no else understands

I reach for a word that does not exist in ordinary language.

My mum has been quiet all morning, not in pain exactly, but carrying a heaviness that sits just beneath the surface. I need a way to describe this particular stillness — it’s not fatigue, not sadness, not withdrawal. It’s something quieter and more specific.

Over the years, I’ve begun inventing private words for these moments, small phrases that live only between me and the experience of caring for her. Caregiving creates its own vocabulary.

There is the “almost-pain” — the subtle shift in her posture that tells me discomfort is gathering but has not yet fully arrived. There is the “soft waiting” — the long stretch of time when neither of us speaks because words would only interrupt the careful balance of the afternoon. There is the “held breath” I take when I hear her move in the next room, a quick internal check to see whether she needs me or is simply adjusting her position.

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These private terms help me stay precise.

Ordinary language often feels too blunt or too vague. “Tired” doesn’t capture the particular exhaustion that comes after a difficult night of bone pain. “Worried” doesn’t hold the layered mix of love, fear, and protective alertness that sits in my chest most days. So I invent quieter words. They allow me to name what I see without reducing it.

I rarely speak these words out loud. They remain internal, a private dictionary that helps me navigate each day with more clarity. When I notice the “almost-pain,” I adjust the pillows earlier. When the “soft waiting” settles over the room, I choose presence over conversation. The vocabulary shapes my actions. It keeps me attentive to the fine details that medical charts cannot record.

There is something both lonely and intimate about this language. No one else shares it. Friends and relatives use the standard words: “How is she feeling?” “Is she better today?” I answer in ordinary language, but inside I am translating. The private terms remain mine, a quiet record of everything I have learned by watching closely over the years.

I’ve come to value this hidden vocabulary. It’s one of the unexpected skills caregiving has given me — the ability to notice, to name, and to respond to experiences that have no ready label. These invented words do not solve the difficulties of myeloma. They do, however, help me meet each day with greater care and less confusion.

In the end, the private vocabulary is another form of love. It is the language I have built so that nothing important goes unseen or unnamed between us.

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