One Month

It’s been a month since I launched Caregiving Advice, and I’d be lying if I said all went smoothly.

The launch was scheduled for Monday, January 7th. On Friday the 4th, my web developer and I were texting each other from hospital rooms: me in a children’s hospital emergency department with my daughter, and she in a midwest hospital with her grandmother, for whom she is the primary caregiver. (Both of our loved ones are doing better, by the way.)

On the afternoon of launch day, following a triage call with our pediatrician’s nurse, I took my daughter to urgent care and left with a prescription to treat a double ear infection… and one tired little girl in extreme discomfort in tow. What followed was an erratic two weeks of sick days, snow days, sleepless nights, and two-hour delays.

Last week, after a meeting at my daughter’s school to discuss her progress and an early morning ENT appointment (with another sick day sandwiched in between), I had to schedule another surgery for my daughter. It’s a very minor procedure, but no surgery — especially one that requires anesthesia — is minor to a parent. Or to a child who has had a surgery every year since she joined our family. Just making the phone call broke my heart.

The emotional side of caregiving — whether in the day-to-day drudgery of cleaning up spills or picking up prescriptions, or in the adrenaline-surging moments of ER visits and hospital stays — can railroad your day like nothing else. While I crossed off the “schedule surgery” task, the rest of the to dos I intended for the afternoon just didn’t happen.

And because we as caregivers often feel perpetually behind, there are some days when we try to do too much. On those days, you end up with a broken jar of honey on your front porch (see photo above).

Caregiving is messy. Working while caregiving is even messier.

The caregiving life is a constant cycle of grief and loss too, amidst the hope for a new normal — even when normal is probably not realistic (what does normal look like anyway?). There are frustrations and disappointments, big and small. There are changes expected and unexpected.

But there are joys and victories too. And there are people who care deeply and make you feel incredibly supported when others leave you feeling isolated — for example, our wonderful team of therapists who affirm me in my advocacy efforts for our daughter’s care even when the doctors have few or no answers (and in fact, these doctors often make me feel foolish for asking reasonable questions or sharing valid concerns).

There are virtual and in-person support groups and friends and family who listen to you when you worry, who talk you off the ledge when you’re angry, hopeless, or just plain exhausted, who send you texts to say, “How’s everything going? Thinking of you.”

I’m doing this work here because I know how hard caregiving is for people of all ages, and for caregivers in all stages.

Parents caring for children — both typical toddlers and special needs teens. Children caring for parents — both boomers and middle schoolers. Spouses and partners adjusting to life after caregiving ends. Millennials putting college on hold to care for grandparents and great-grandparents. Parents living with terminal illnesses and other difficult diagnoses while raising a young family. Neighbors who buy groceries and shovel walkways in the winter for an older adult who lives alone.

The possibilities are endless. Few of us are not touched by caregiving in some way.

And all of these caregivers need help and hope. They need compassion, conversation, and connection. That’s what I hope to provide here, along with the stories and perspectives of these unique individuals. And that’s why this blog is dedicated to giving all caregivers a voice, and changing your mind about caregiving in some way. [That said, if you know someone who needs to share their story here, or if that someone is you, I’d love to hear it!]

Some sections of this site are yet to be unveiled; some need refining and expanding. My monthly newsletter is yet to be launched. But I’m learning to be more comfortable with things being messy, unfinished, a work in progress — because as a wise friend of mine put it, “You’re a human being, not a human doing.” I really do love doing. But caregiving and self-care must come first, and sometimes, that means simply being. Everything else can wait.

Your turn: What or who gets you through the unfinished mess of the caregiving life? What or who lifts you up? Share in the comments below.