While we are pleased with the number of services available for adults with disabilities in our new home state of CO, one that has continued to elude us throughout Skyler’s entire life is respite.
Over the years we’ve met countless providers, filled out paperwork, waited on lists, and hoped each new opportunity would finally be the one. Here in Colorado alone, we’ve had meet-and-greets with four respite workers (a fifth never showed up), and after confirming dates with two different providers for some long overdue date nights, both were no-shows with no phone call or explanation.
It’s frustrating. It’s discouraging. And honestly, it’s heartbreaking.
Last week I enjoyed a much-needed girls’ trip with one of my closest friends. This week my husband is heading out for a long golf weekend with his friends. Those breaks matter. They refill our cups and remind us who we are outside of caregiving.
But what most people don’t see is that our “vacations” almost always happen separately.
When I’m away, my husband becomes Skyler’s full-time caregiver. When he’s away, I step back into that role alone. There are no weekends away together, spontaneous getaways, or anniversaries spent reconnecting. The luxury of strengthening our marriage through shared time away is something we’ve rarely experienced.
It’s one of the quieter losses of being forever caregivers.
People often recognize the physical demands of caregiving, but the emotional cost can be just as heavy. The lack of reliable respite doesn’t just affect the caregiver—it affects marriages, friendships, mental health, and the ability to simply be a couple.
We’ll keep searching. We’ll keep hoping the right respite provider eventually comes along. Because respite isn’t a luxury. For families like ours, it’s the support that makes it possible to continue caring well for the people we love most.
