POST 50

A Caregiver's Reality: It's Always Something

We live on a roller coaster, just waiting for the next bad thing to happen.

Since late spring, my husband has been a kidney dialysis patient ― first in the hospital where he spent a month, and since then as an out-patient who is back at home with me and our kids. His kidneys have stopped working and are not expected to resume.

Because of my husband’s age and overall health, he is not a candidate for a kidney transplant. In a nutshell, that means he needs dialysis three days a week for four hours each session for the rest of his life. If he stops dialysis, he will die. 

So in essence, we know how this story will end. We’ve shed our tears, spewed our anger, and got our financial affairs in order ― advance medical directive, will, etc. And then we pledged that we would do our best to live the best and fullest lives we could in the small cracks between treatments.

And that’s where we are stumbling. Because, in the wise words of Roseanne Rosannadanna (Gilda Radner’s character on SNL), “It’s always something.”

Every day there is a new issue, a new problem, a new potential “something-bad.” He feels faint or dizzy; he wakes up weak; he is wobbly on his feet; he can’t urinate; he’s urinating too much; his taste buds have gone awry; his ankles are swollen; his feet hurt; he can’t swallow; this hurts, that hurts. It is an endless litany of complaints and as his caregiver, I respond to them all.

The question is: How do I respond? I have no medical background or training and about 100 percent of the time I feel like I am in way over my head. When do I shrug it off and when do I rush him straight to the ER?

Trust me, it’s hard to go Zen with this stuff, at least for me.

Each new potential “something-bad” gets my heart pounding in my chest and pushes my blood pressure up. Was that swelling on his face caused by a stroke, or did he just sleep funny on that side? Does his distended stomach mean too much water retention, or was that from the pizza he snuck last night? If he’s too tired to watch our son’s soccer game, should I leave him home alone or call the doctor? What merits a 911 call versus making an appointment for next week? 

A friend who survived cancer once told me that the worst part of cancer wasn’t the chemotherapy that made all her hair fall out. No, she said, the worst part was that once you’ve been told you have cancer, you can no longer just have a simple headache without immediately assuming it’s brain cancer.

You always go straight to the “Is this it?” moment, she said.

And that’s precisely where I am now. I live on a roller coaster, trying to assess whether a swollen ankle is the tip of the death iceberg. I am constantly looking around the corner, waiting for the real boogeyman to jump out. At least once a week, I text my boss that I may need to rush him to the ER or am afraid to leave him alone in the house. As for those “cracks between treatments” ― the ones in which we said we intended to live life to the fullest ― well, of course we don’t. How can we when we are too busy jumping from one “is this it?” moment to the next.

Most of these “is this it?” moments, of course, aren’t. They fizzle out into nothing. But one day, one of them will be the event that triggers the end. And knowing that, it’s not possible to ignore any of them.  At least not for me.

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