Was I a Caregiver or Something Else?

When my husband was diagnosed with prostate cancer many years ago, the nurse asked me if I was going to be his caregiver. My response: “be his what?” I had never heard that term before the day he was diagnosed.

I guess I was lucky; no one else in my family at that time had been diagnosed with any serious illness where they would require a significant amount of my help. So caregiver was a word very foreign to me.

I am more than someone who just provides care

Since his diagnosis of prostate cancer and later, bladder cancer, I have often been referred to as his caregiver. It’s a term often used by medical professionals, by family, by consultants, and many others. I often used that term myself. Yet I began to question whether that term was the correct one for me as I helped my husband battle the disease and treatments. Later when I supported my daughter through her breast cancer and mastectomies, radiation, chemo, I again felt that caregiver was not appropriate for me.

When my husband Dan was diagnosed, I guess I accepted that term initially because that’s the term everyone used. But the more I thought about it, the designation caregiver seemed unattached, kind of disjoined from our lives and circumstances. To me, it seems like it refers to someone who’s not emotionally committed to the patient but is there as an aide only.

As the wife who’s been blessed to be with the love of her life for over 50 years, I am more than someone who just provides care when he’s unable to do so himself or needs help. I’m the one who shares in his pain, shares in his depression, shares in his feelings of despair. I’m the one who cries with him in his pain and who cries alone when he can’t see my tears. My dilemma over the term caregiver grew even stronger when I became the person to help my daughter - helped her shower, dress, cleaned drainage tubes, and measured their output. This is not just care; this is a loving response to someone who needs me, but who I need just as much.

Finding a different term for myself

So, what do we call this role? For many people the term caregiver works, and I don't criticize or have any concerns with that. But to me, it just didn’t work anymore. I needed something more personal and more appropriate that would reflect that I was not only providing care, but was also physically, mentally, and emotionally invested.

Care partner was one of the terms I recently discovered that seemed to fit the relationship my husband and I have. We are partners in many ways: in marriage, in family, in our home, our goals, our lives. When he got sick, we became partners in making sure he had what he needed to heal and continue to live the best life possible. We worked together, we shared, we learned together, we questioned things together – we partnered.

When my daughter was diagnosed with breast cancer, I felt my world falling apart again. Of course I would help her in any way possible without question. There was so much to do and so much to learn. I never even gave a thought to a “title.” I was mom, and moms are always there for their kids. There was no “name” for what I did. I just loved my daughter through her health crisis. I was just mom.

What term fits you best?

So I guess the bottom line, to me, is that whatever term fits you is the right term to use, whether it’s caregiver, care partner, wife, mom, or something else.