My husband and I aren’t just each other’s caregivers; we’re care partners

A couple of weeks ago, I wrote about how post-vaccine fatigue had me thinking about multiple myeloma relapse. I mentioned how worried my husband, Tony, got, waiting on me hand and foot on a Sunday when I felt like I just couldn’t get out of bed.

I didn’t mention that his feet tend to drag, and one hand doesn’t work particularly well. Tony’s struggled with back pain and neuropathy in his feet since a motorcycle accident more than 20 years ago. On top of that, he doesn’t have full function in his right hand due to nerve damage from a stroke a few years ago. He struggles going up and down the stairs, especially if he’s carrying something. But he did it that Sunday afternoon because he wanted me to rest.

The next day, I was the one trotting up and down the stairs, bringing things to him while he recovered from overdoing it the day before.

It’s all part of “in sickness and in health,” as we promised each other 33 years ago. We take care of each other. We’re not just each other’s caregivers — we are care partners. That’s the term the International Myeloma Foundation prefers. It recognizes that the people who care for their loved ones are an integral part of the myeloma journey, serving as nurse, chef, accountant, and chauffeur, while also filling the roles of spouse, child, friend, or other significant other.

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Learning by doing

It might seem like taking care of your ailing loved one would come naturally.

It doesn’t.

And no one teaches you how to do this stuff in advance. Though, honestly, even if someone had, I don’t think I’d have paid close attention to the lesson. Most of us are pretty good at glossing over unpleasant topics, stumbling through the challenges when we’re confronted by them.

In November, there’s a special push to honor care partners and provide resources and education to help them. National Family Caregivers Month recognizes the more than 63 million care partners in the U.S.

A work in progress

Together, Tony and I are learning to navigate both his disability and my myeloma. We’ve learned I have more patience for paperwork, while he has more time to make phone calls and appointments. When he still drove me to appointments, I learned to close my eyes so we wouldn’t argue about his driving. He’s learned to text me things he needs at the store because if I only hear it, I will forget! We review care options together in a shared decision-making approach. And when one of us is a bit “off,” the other is the first to notice and say, “You should see the doctor.”

Neither of us always listens to that suggestion the first time. Or the first five times. I did say we are learning to navigate. But the partnership is always a work in progress, just like life.

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