Behind every good primary caregiver, there’s someone holding up the other end

2013-05-15 10:33:21 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

I was at Akron Children’s Hospital last Thursday, but not with Baby Jude. Not doing Parent Advisor stuff and not picking up or dropping off paperwork. I was at Akron Children’s Hospital to visit a little baby boy and his Mama.

I went to high school with his mom, Beth. We weren’t tight friends, but friendly acquaintances. Through the power of social media, we got back in touch a while back through Facebook.  Unfortunately the majority of our “reunion” has been to discuss Baby Jude (Beth is incredible in adaptive recreation), and now to discuss the road she and her boy face. He is admitted to Akron Children’s and is a true champ of a little guy. His Mama is no slouch, either.

Anyhoo, I dropped in with a bag of snickety-snacks to help sustain her visitors and ply an RN with Cheetos to make the process go a little faster. (That part I’m kidding about. The RNs are fab.)  We visited and I got to meet her little boy.

As we were chatting she casually mentioned that her husband has been out of town the whole week for work. Work that cannot be avoided, that is important to their family, but work that is halfway across the country. She has been at Akron Children’s Hospital with her baby facing procedures, testing and diagnoses without her husband by her side.

She has incredible support in friends and family (who are caring for her 4-year-old daughter) so all bases are covered. But I kept thinking, “She is nothing short of amazing.” I dare a doctor to not act in her baby boy’s best interest because she is so on top of things. For someone sick with worry, who’s sleeping on those pull-out couches in the rooms, she has make-up on, her hair looks good, and she has all her medical stuff together. Beth is nothing short of amazing.

Then I remembered her husband - halfway across the country, working a necessary job, doing more than his part. He must be sick with worry  – about his boy, about his 4 year old daughter whose week has been topsy turvy, and about his wife.

It’s certainly not by choice that he hasn’t been to the hospital to see his family this week. If it weren’t for cell phones and how awesome Beth is with all of this, her husband would have gone stir crazy – halfway across the country.

I got home and took a look at my own husband - at his laptop, still working. Hour 13, 14, or maybe 15, for the day. It’s not by choice that he has only attended one of literally hundreds of Baby Jude’s therapy appointments in two years – between Akron Children’s Hospital, Summit DD and Cleveland Sight Center. Or that he has never been to one of countless doctor appointments, or has not signed the bottom of a treatment plan or an IFSP, or could not find his way to the NeuroDevelopmental Science Center without all the signs and a stop at the Volunteer Desk to ask.

It’s not his choice to not be Baby Jude’s primary caregiver. It’s life’s choice. He has not been to these therapies, team meetings and doctor appointments for one reason and one reason only –he was working. Working 60-70 hours per week, sometimes longer, to be the support to me. Which in turn is the support to Baby Jude and Jane. Major medical insurance cannot be ignored.

And I am certain, though we haven’t chatted about it, that he does feel left out, that he does feel guilty when he shows up to the hospital room long after a procedure is done, that he knows I sit alone in the waiting rooms until procedures are done.

I’m sure he’d rather be with his family. It dawned on me (thank you, Beth and family, for the lesson) to wonder who pays attention to the people behind the caregiver? Who thanks them? Who reaches out to see how they’re handling the stress of being at work rather than in the radiology, therapy session, feeding clinic or outpatient surgery waiting room?

There are caregiver support groups everywhere. There’s even a book, “Chicken Soup for the Caregiver’s Soul.” Everyone loves a caregiver. But who loves the support system behind the caregiver?

Rarely, do you ever hear anyone mention the people who are behind the caregiver, who make so much of it possible. Who help coordinate childcare, who work endless hours, who are the primary on health insurance, or who listen to caregiver whimper or complain or rejoice at the littlest things.

I know I don’t mention it enough. We’ve had friends, cousins, aunts and grandparents who have cared for Jane so I could make it to a Baby Jude appointment. We have had so many prayers, love and well wishes from friends near and far.

Those are only some of the people who have supported me as Baby Jude’s caregiver. Mostly, even without physically being there, my husband has been the one making it possible. Not because he wants to abstain from Baby Jude’s appointments, therapies or doctors, but because he has to.

And I need to remember to say thank you a whole lot more often, because if “behind every good man, there is a good woman,” then behind this trying-to-get-it-done caregiver, is a hard-working, good man.

Mother’s Day looked a little more like Father’s Day around here this year.

Grateful, Prayerful & Hopeful.

Especially for old friends turned new and one hard-working guy.

Read more about Baby Jude in the rest of Sarah’s blog posts.




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