When Byron was diagnosed with ALS in March 2023, Monica’s life split into a before and after.
It started with what looked like a softball injury. Months of doctor visits. Then a neurologist. Then a diagnosis that changes everything.
ALS.
Last year, Byron nearly died. In that moment, he made a life-or-death decision to go on a ventilator. It was bittersweet.
The ventilator meant more time. It also meant triple the care. Triple the responsibility. Triple the cost.
Today, Byron requires 24-hour care. He cannot be left alone. Medicaid covers limited hours of support, but it isn’t enough. So Monica fills the gaps.
Her days look like this:
Suctioning. Cleaning. Ordering supplies.Cooking. Kids. Suctioning again. Appointments. Phone calls. Sleep (when she can find it)
When asked what caregiving is like, she doesn’t sugarcoat it.
“It’s extremely hard.”
She hasn’t worked since becoming Byron’s full-time caregiver. Every ounce of her energy goes to keeping him stable and raising their small children.
And sometimes, the weight of it all feels invisible.
“It’s hard to understand you have a purpose in life when all your energy is going to caring for someone else. You have no time for yourself.”
Caregivers suffer too.
They lose careers.
They lose sleep.
They lose parts of themselves.
But Monica hasn’t lost her strength. What carries her on the hardest days?
“My kids. And I talk to Jesus a lot.”
Through the Our Tribe grant, Cocktails & Caregivers is helping cover childcare support — giving Monica a few hours of help each week so she can manage appointments, breathe, or simply sit still for a moment.
Not a vacation.
Not something extravagant.
Just support.
When asked what advice she would give another caregiver, Monica said something we hear often:
“Reach out for help, even if it’s just for a hug.”
Because nobody truly understands unless they’ve lived it. And no caregiver should have to live it alone.
The Our Tribe program gives caregivers one less worry while they support and care for their loved ones during difficult times. A big thanks to our donors for supporting this program. Learn more about how you can support our mission at cocktailsandcaregivers.org.
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