POST 50
08/25/2016 06:10 am ET

This Is The Thing That Caregivers Fear Most

The worst part is not when defeat starts to creep in around the edges.
RunPhoto via Getty Images

When someone you love falls seriously ill, your first instinct is to immerse yourself in their healing. You do your best. You take every step with them; spend hours at their hospital bedside, whole afternoons waiting for them to be seen by doctors, endless hours at rehab centers watching them relearn to walk, to speak, to use the toilet on their own again. And while you are doing this, studies have shown that there is an excellent chance you are ignoring your own health, your own job, your own life. Caregiving takes over everything. But you do it. You serve each bowl of homemade chicken soup as if it were the miracle cure that will make your patient whole again.

At least that’s how it is in the beginning. Sometimes as a caregiver, you get lucky. Your patient recovers and with that comes the return of some semblance of your pre-caregiving life. Other times though, things get worse, and not better. The care you must give burrows deeper, becomes more medically complicated to manage. Problems beget other problems. Diagnoses change, test results reveal new issues. Once you step on the medical treadmill, there is no way to slow the damn thing down. Each doctor’s visit brings more trips to the pharmacy, more tubes and needles for you to learn how to use. More procedures for you to master so you can do them at home. You have more things to remember. You make lists and then lose them. The dark precipice that you are trying to pull your patient back from just keeps widening and one day it becomes clear that ultimately you are powerless and are going to lose this war. That’s aging for you: It always wins in the end.

But as any caregiver who is being honest will tell you, the scariest part is not when defeat starts to creep in around the edges. It’s when it doesn’t and you start asking yourself “how much longer can I do this?” It’s the status quo and the possibility that this is my new normal that destroys me.

I am a relative newbie to caregiving. My husband’s kidneys decided to stop working in May. He spent a month in the hospital and then was discharged home to my care. We are among the lucky ones. We have decent insurance, a teenager who has helped all summer with the driving, and I have the world’s most understanding boss. But I still want to know: When will this be over? I am the kid in the backseat of the car asking when we will get there.

I feel trapped in a theater being forced to watch a bad movie. I want it to end already so I can just go home. I consider just getting up and leaving because I know the movie won’t be getting any better. But I won’t. I just can’t. And I feel selfish for even thinking these thoughts. After all, it’s not me walking around with an open dialysis port in my chest; not me who will never again be able to eat my favorite foods; not me who feels so weak and tired that I sometimes need my child’s help to stand up from the couch.

But actually, it is me too. Ask any caregiver and they’ll tell you we are the invisible patients ― the ones whose needs are neglected, whose pain goes untreated, whose job it is to be cheerful and keep the family train running on time while we die a little more inside each day. 

In my new role, I’ve met many military wives and others who are caring for spouses or parents. I can’t tell who has it harder: the ones who love their patients or the ones who don’t. I truly can’t imagine doing what I do for someone I didn’t love and care about. And yet I’ve met some women who are caregivers to the fathers who abused them. There are even a few who take care of their ex-husbands. Nobody deserves to die alone, one told me. I’m not sure I believe that but I do marvel at how she manages.

Me? I take it one day at a time. What I use to regard as problems I now see as mere inconveniences. I could stand a little more time to myself and without question I’ve fallen into the group of caregivers who wish their patients would simply try harder ― try harder to get well, try harder to appreciate us, try harder to understand that our best may not be enough but it remains our best.

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