We’ve all heard stories of literary heroes embarking on extraordinary quests. But what happens when the call to adventure isn’t a dragon to slay but a nonverbal, profoundly autistic adult loved one to care for?
I recently sat down with Skyler’s new case manager to better assess and define the daily in-home support tasks he needs assistance with. We highlighted each of our specific responsibilities related to homemaker-based tasks, (laundry, shopping, meal prep) personal care tasks (teeth brushing, showering, feeding, managing behaviors), ensuring his safety, and all of the endless invisible work in between to determine how many hours of support he requires each week.
When added up, the number honestly shocked me. In total, my husband and I spend 88 hours a week caring for Skyler.
That equates to two unpaid, full-time jobs on top of the full-time jobs we both already have. No wonder I often feel overwhelmed, exhausted, and like I’m barely holding things together.
However, that math exercise validated something I’ve always known but couldn’t quite articulate: this life is hard & demanding.
Caregiving never clocks out. There are no weekends off, no holidays, no sick days. And while my love for my son is unshakable, the reality is that the role of lifelong caregiver can mentally and physically break even the strongest person.
Most people my age are empty nesters with the freedom to plan weekends with friends, vacations, or spontaneous dinners out. While my social life has shrunk down to rarely exist beyond the walls of our home.
Some days, I feel like the world is moving on without me.
This isn’t about resentment or complaining, it’s about honesty. About naming what so many caregivers quietly carry. Because when we don’t talk about it, the loneliness deepens. And when we do, we find that we’re not as alone as we feel.
If you’re also living this life, I SEE YOU! I know the bone-deep tiredness, the mental load of always being “on,” and the ache of isolation. I also know the fierce love, the resilience, and the strength it takes to show up every single day.
Eighty-eight hours a week may sound like an impossible number—but for us, it’s just life. And by sharing it, maybe others will begin to understand why caregivers so often look tired, why we cancel plans, why we say “no” more than we’d like, and why we desperately need community.
Because behind those 88 hours is love. And behind that love is a person—a mom, a dad, and a human being—who longs for connection too.
Caregiving often begins not with a grand invitation, but with the courage to meet life where it truly unfolds.
So, while we may not be slaying the proverbial dragon, I want the world to think differently about heroism – shift the focus from grand, visible feats to the quiet, consistent acts of unwavering dedication, empathy and resilience that define the caregiving journey.
