‘Good Enough’ Means Something Different in Life With ALS

What it's like to be a caregiver for a loved one with ALS

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by Kristin Neva |

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In the Jan. 23 episode of “The Happiness Lab” podcast, Simone Stolzoff, author of the book “The Good Enough Job: Reclaiming Life from Work,” argues that we should stop hunting for the perfect job.

Stolzoff and podcast host Laurie Santos, a psychology professor, discuss how society’s view of work has changed over the course of a generation. Today, for example, rather than work being simply a way to pay the bills and support a family as it used to be, we’ve made it a major part of our identity. Stolzoff suggests that we should change our mindset to accept that a job may be just “good enough” — meaning that it’s a means to an end. We can find meaning in other areas of our lives.

Because my husband, Todd, has ALS and is paralyzed, he needs a full-time caregiver. I took that unpaid “job” because his insurance doesn’t cover his care, and I don’t have the ability to make more than what it would cost to hire someone to care for him.

I looked for something I could do from home so I’d have the flexibility to jump up whenever Todd needs my help. I’ve written a series of novels and a children’s book. I make and sell wreaths at Christmastime. These pursuits have been good creative outlets, but haven’t produced enough income to allow me to do something other than be Todd’s caregiver. So his daily care falls on me.

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At times, I can’t believe this is our life. In a culture that celebrates the American dream and the underdog, it’s hard to live with an incurable disease like ALS. As the disease progresses, the losses continue, and it becomes hard to accept an increasingly difficult “new normal.” I wish we could do what other families do, such as going on vacations, walking on the beach, or even attending concerts or sporting events.

Before we fundraised to hire night caregivers, I wasn’t getting enough sleep, and life was too difficult to say my job was “good enough.” When Todd gets a cold or needs help coughing, and I wonder if he’ll pull through, the job isn’t “good enough.” When I’m tired, or a night caregiver cancels on me, I can’t get into a positive mental space. In those moments, I wish my husband’s care was not my job.

But on some days, I can say, “It’s good enough,” because in this life with ALS, I still have my best friend, we still have our time together, and we have the kids to raise. Those are meaningful things.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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