Quiet Exile

It’s now 11:39 am on Saturday. I can see by my Kasa app, which shows views from the 3 different cameras I have pointed at the hospital bed occupying our bedroom, that Carol is still asleep. It’s not unusual for her to still be sleeping after 14 hours… sometimes she sleeps until early afternoon.

Earlier this morning I decided that I should write some. Maybe try to describe some things I have been feeling. Just this week, a good friend encouraged me to keep writing. And some recent posts by Sean Dietrich* (Sean of the South) have prompted me to maybe bare a bit more from my soul. Why not. As I have mentioned before... it is good therapy for me I think.

The dictionary defines exile this way:

exile

noun

: the state or a period of forced absence from one's country or home

Caring for a spouse with dementia is described as a labor of love, but rarely is it acknowledged for the real sense of exile it can bring. This exile isn’t marked by distance or borders, but by an invisible barrier that grows between the caregiver and the world to which they once belonged. As a caregiver, I remain physically present in my community—shopping at the same stores, walking the same streets, even spending much cherished snippets of time with friends and people I know—but emotionally and socially, right or wrong, I feel like a stranger in a place that no longer recognizes me.

The first signs of this exile appeared quietly (and none of what I am saying is criticism… it is just reality.) People stopped calling as frequently, unsure of what to say or how to offer support. Invitations dwindled, conversations grew awkward, and I began to sense that our presence—mine and Carol’s—was a reminder of something uncomfortable, something folks would rather not confront. Dementia is not just a disease of memory; it is a slow, painful unraveling of identity, and with it, the social fabric, that once connected us to others, began to fray.

Daily life becomes a series of negotiations—managing moods, repeating answers, calming fears—and through it all, I find myself both overexposed and invisible. People may recognize the effort, but few truly understand the isolation. The emotional burden is heavy, compounded by grief that comes not in a single moment, but in a thousand small losses. Carol is still here, yet gone in so many ways. And, in losing her bit by bit, I also lose the future we imagined, the roles we once played, and the shared life that anchored me to my “community.”

Support groups (via a few online FB groups) offer some solace—a reminder that I am not alone in this exile—but they also reinforce the truth that this is a separate world, one outsiders seldom enter. While others make plans, chase goals, and talk about their next vacations, I measure time in medication schedules and hospice nurse visits and quiet moments of lucidity.

I’m pretty sure being a caregiver has indelibly changed me. I think it has taught me some patience and compassion, yes, but also a hard-earned resilience… but mostly forged in solitude. Just me and God. I don’t seek pity, but I do wish for recognition—not as a hero, but as someone who, while caring for another, has quietly lost his place in the world I once called home. In that quiet loss is a truth many caregivers carry: that love, even when constant, can be a lonely road.

Sorry if this was hard to read. Imagine how hard it was to write.

*if you are not familiar with Sean, you really should check him out. He writes via Substack

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