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Caregiving is a marathon

  • Miami Herald
  • Published Wednesday, March 13, 2013, at 9:55 p.m.

Caregiving is exhausting. Grueling. Draining. Wearing. Simply strenuous.

There is no other way, no other declarative sentence, to explain it. I, who have long tried to channel the Energizer Bunny, collapse in bed every night, bone-weary but mind racing. I can think only of what was left undone and what is left to do. And the list is long, so very long:

Doctors’ appointments.

New prescriptions or refills.

Emergency room visits.

Internet research.

Phone calls.

More doctors’ appointments.

Hospital stays.

Fights with the insurance company.

Lab work.

More doctors’ appointments.

In many ways, raising five children groomed me for this new phase in life. Now, instead of driving to football practice, I’m chauffeuring The Hubby. In place of homework skirmishes, I battle unresponsive health care workers. In both cases, the stakes are high, the grind intense, the remuneration absent. I’m on call, always – even when I’m at my other job, the real one, the one that pays the bills, the one that gives me an identity.

For the past eight months, since The Hubby went into septic shock and nearly died after an esophageal rupture, the two of us have found ourselves in uncharted waters, navigating undercurrents of doubt and stress and frustration. No markers light the way. The skies are overcast. We are forever in search of answers that don’t exist, solutions that have yet to be discovered.

This comes at a time when, with the last of the kids off to college, we expected to kick up our heels. We never thought one of us would have to worry about health with a capital “H.” That kind of anxiety comes knocking when you’re old, when you’re decrepit, when you’re … well, when you’re not us.

Hands on the wheel of my little wind-whipped boat, I’ve learned some hard lessons along the way. That knowledge curve has been steep, and it has convinced me that what you read about our health system, all those reports about waste and mismanagement and human error and impersonal service, is true. Too true, even when you cross paths with well-meaning people. (Then again, you know how the road to hell is paved, but that’s fodder for another column.)

During The Hubby’s last hospitalization, the second in five weeks, we saw physicians who kept one foot in the room, another in the hallway. They darted away faster than Jamaican sprinter Usain Bolt. The exceptions, and thankfully we were fortunate to have one or two, we welcomed with blaring trumpets.

The nurses were spread too thin, the nutritionist reluctant to come to the room, preferring instead the phone. And when The Hubby was finally allowed to return home, the discharge orders were so confusing, so incomplete, that we concluded that the decade of college we had between us was useless.

So as a caregiver, my responsibilities are clear, my role obvious. I’m an investigative reporter with a touch of in-your-face Geraldo Rivera. I’m lobbyist and advocate, triage nurse, air traffic controller and NASCAR driver. On occasion I whip out my engineering degree in medical devices, earned from the University of Reality.

I’m also not embarrassed to tell The Hubby how lucky he is to have me. (This, after all, is the duty of every wife, regardless of situation.)

The other night, as I sopped up the green stomach juices oozing out of his feeding tube, I looked him straight in the eye and blurted: “It’s a good thing I’m not squeamish, buddy.”

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