Don’t Call Me “Caregiver”

Does anybody else have a problem with the word “caregiver?”

Okay, it’s true my husband has mantle cell lymphoma. And yes, when we found out, I bought a big yellow 3-ring binder and tabbed it to keep track of labs, tests, treatments, doctors, reports, travel arrangements, research, emails and faxes.

Yes, I sat in on Tom’s bone marrow biopsy and shared big-eyed looks with the skilled young woman twisting the auger.

Of course, I massage Tom’s feet, legs, back, arms, shoulders and neck until this lean tough man who groans at first finally purrs like a happy tiger. This man who sneaked me peanut butter and jelly sandwiches and spent the night in my room when I was in the hospital a few years ago. This man who would kill anybody before breakfast if they put a dent in my morning smile.

Call me Tom’s mate, best friend, lover, running buddy. “I am Tom’s caregiver” is a sentence that will never cross my lips. It makes him sound passive in his own care, even incapable, and that’s so far off the mark it could be in outer space.

The cover of our bright yellow ring binder has a transparent sleeve. I slipped in a photo of Tom and me, our arms around each other, big conspiratorial smiles. It’s what the doctors and nurses see when we go in for appointments. Tom has the diagnosis, but we both have the disease, and we will share that journey step for step, along with the remission, the recovery, and living our next dream.

So please, don’t call me “caregiver.” Just call me Sally.

2 thoughts on “Don’t Call Me “Caregiver”

  1. I hear you! And while I think that’s a useful word, what you’re underscoring is the inadequacy of labels, especially others’ labels for us.

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    1. Yes, and I understand its usefulness. In fact, I’m just about to participate in a “Caregiver’s” Study with the Mayo folks. It’s just that Tom has my back; I have his. The label “caregiver” has an institutional feel that seems to suggest he cannot care for himself. So while I guess I fit the practical definition in this situation, I just always want to (and will) say, “Yes, and he is my caregiver, too.” Thanks, Richard

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