It’s been a rough week.
Hospice care for my mom officially moved into our home, which means I’ve stepped into the role of primary caregiver. And let me tell you… nothing prepares you for the whirlwind that comes with it. Nurses, aides, equipment deliveries, medication changes, schedules, instructions, emotions, and approximately 47 opinions a day bouncing around in my already overwhelmed brain.
At the same time, my biologic medication was wearing off—which is always a delight. Technically it’s an 8-week infusion cycle, but my body likes to tap out around week six like, “Best I can do is pain and exhaustion.” So by the time infusion day rolled around, I was hanging on by a thread and caffeine.
Thankfully, the day after my infusion we had no appointments, no visitors, and no one ringing my phone asking questions I didn’t know how to answer. Honestly, it felt like the universe finally threw me a tiny bone because my biological hangover is one for the ages. It’s honestly allt he pain without the party. A sad reality of the chronically ill living with autoimmune arthritis.
Mom slept most of the day, which should have lowered my stress level… except when someone you love is sleeping that much, your brain starts spiraling into all the “what ifs.” Hospice is such a strange mix of gratitude, heartbreak, exhaustion, and hypervigilance. You spend half your time praying they rest comfortably and the other half checking to make sure they’re still breathing.
Still, for the first time in days, I was able to rest too. Not perfectly. Not deeply. But enough to let my body unclench for a minute.
Right now, I’m learning that survival mode sometimes looks less like strength and more like stale coffee, sweatpants, and celebrating the fact that everyone made it through the day.
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