Caregivers Feel Rage, Too

It has been 6 years since I was a caregiver in the trenches of stage IV bladder cancer. My husband and I were on a desperate quest to save his life. We ultimately failed. He died after 11 months of constant treatments, consultations, transfusions, infusions, and pills.

It was one crisis after another

We seemed to ricochet from one crisis to another. An early chemotherapy triggered blood clots that landed him in intensive care for a week. Just as we recovered from that, we found out the treatment wasn’t working. And not only was it not working, the cancer was getting worse.

You get the idea. We were drowning. And every time we felt a bit of relief, something else would happen.

So, it is fair to say that my experience as a bladder cancer caregiver was turbulent. I recognize that everyone’s experience is not like that. But mine was overwhelming. And with that overwhelm, came intense emotions that often piled onto each other because things were happening so fast.

I remember the rage

And one emotion I can remember so well was rage. There was no shortage of things to be in a rage about: an aggressive cancer that no one could fix; the intense pain my husband endured; the sudden upending of life as we knew; the unfairness of it all.

I could be overcome with rage when I read or heard about “caregivers.” Some of the portrayals of caregivers struck me much like portrayals of women in the 1950s. They are devoted to their families, giving ceaselessly with little thought of themselves, etc. Whether in a brochure, a video, or a conversation there was also – invariably – the “be sure to take care of yourself, you awesome caregiver!” sentiment.

The intentions were good

All of this was meant in kindness and to help. And yet it infuriated me. I still ponder why it made so angry.

I think sometimes the platitudes felt condescending or as if they minimized the very real challenges we faced every day.

I needed practical help, not just platitudes

I didn’t need someone telling me to get enough sleep. I needed someone to fast track the paperwork for the blood transfusion so I wouldn’t have to push my suffering and groggy husband in a wheelchair around a medical center for the right signatures.

I didn’t need a nurse telling me what a great job I was doing. I needed her to help move our appointment because my husband was too groggy to get in the car and get there by 9 a.m.

I needed the practical stuff. And the world wanted to give me the platitudes. They were well-intended platitudes. And the giver’s heart was in the right place. But they often didn’t help me.

Think about practical help you can offer

Since that experience, I encourage people to ask caregivers specifically what help they need. Or offer up specifics. The “call if you need anything” just doesn’t cut it. Because in most cases, even if they need something, they won’t call. But if you’re going to the store and can offer to pick up a few items, that’s practical help.

So next time you encounter a caregiver to a seriously ill patient, offer your words of kindness. But try to offer some substantive help, too.