Why We Need to Change the Language of Family Caregiving

Words matter more than we may realize.

Photo by Jomarc Nicolai Cala on Unsplash

I wrote this post many years ago and want to share it again here. Because my feelings on the topic have only intensified since then.

My plunge into the language of family caregiving began when I spotted a post on Twitter (now X) many years ago.

When caregiving expert Debra Hallisey wrote an article to express her concern about how the “parenting our parents” reference is an all-too-common phrase, I chimed in to agree and add a cringe-worthy phrase of my own: the “burden of family caregiving.”

Similar to what Debra did, I then DuckDuckGo’d (my preferred method of search) “burden of family caregiving” on my phone and received first-page results of six research studies published in academic journals using this burdensome term.

While it’s good that content with such status offers evidence-based descriptions of the need for more support for family caregivers, I worry about the negative connotations it carries with it.

Such dark language suggests to caregivers that the critical support they’re providing for their family members should be defined as something overly difficult to bear, and communicates to those receiving care that they have indeed become what they always feared they would someday be.

Caregiving language matters

I’m not trying to minimize how hard caregiving can be, because I’ve been there for long seasons myself.

But I think language matters and influences our perspectives perhaps more subtly than we’re aware.

In a post entitled “How Our Words Impact Others,” leadership expert Michael Hyatt agrees: “Our words carry enormous weight. More than we sometimes think. They often impact people for decades, providing either the courage to press on or one more reason to give up.”

To me, “burden” is such a negative word.

Such a woe-is-me, how-did-I-get-into-this-mess kind of sentiment.

An Eeyore kind of word that Winnie-the-Pooh would’ve chided his friend for.

Unfortunately, that expression is all too common. Perhaps because our elders are surrounded by a society which frequently describes them as such.

If we give our older loved ones the message that they’re a burden or should be treated like children, we add to the pile of losses they experience as they age.

Family caregiving as a team

My mom said she never wanted to live with her kids because she didn’t want to be a “burden.”

Fortunately, she was willing to put that notion aside after two hip fractures, an invitation from my husband to live with us (she said my invitation wasn’t enough to get her to agree), and a remodel to our home so she could have her own apartment on one end.

We were blessed to be able to do all that as a team, which allows me to look back and savor the gift of having had her with us for nearly ten years. Getting to care for my mom was a blessing and privilege beyond what I can describe.

Was it a challenge for us both? At times, of course.

But a burden? Absolutely not.

I just can’t imagine referring to that precious season of caregiving in such a negative way, which is why I’m put off by caregiving contexts that do.

We were fortunate to be able to do things the way we did, and I don’t think we were all that unique. There are so many adult children taking wonderful care of their parents in one way or another and grateful to be able to do so.

I doubt many of them would use a language of “burden,” so I wonder how this negative sentiment got started in the first place.

Family caregiving and the circle of life

Family caregiving is a challenge for sure, but calling it a burden is something I just can’t do. Instead, I see family caregiving as part of the circle of life.

For most of us, in my case for sure, our parents went to extremes to care for us without ever referring to us as a “burden.”

So why, when they need help down the road, does society propose that caring for them should be defined as a burden or some kind of surprise?

Since aging is something our bodies are determined to do, planning to care for our loved ones as they age should be something we plan for instead of treating it as some type of hardship that appeared out of nowhere.

Now, I’m not suggesting that every family should be able to make the shift to caring for a parent in their home full time, since there are so many variables that play into that scenario.

But even if a loved one’s needs are best met in a facility of some type, family caregivers can and do continue to provide a unique loving presence and ongoing support.

Also, I know there are families in which dynamics are much more complex than what I’m describing here, and I’m not trying to minimize or speak to that.

Instead, my point is that by using negative terms to describe a natural and predictable season of life, we do everyone a disservice - including ourselves.

When it’s our turn

Unless we die suddenly, we’ll likely need care, too. And I predict I’ll be a challenge for whoever ends up with that tall task.

But it will break my heart if I overhear someone referring to me in my final season of life as a burden.

We live in dicey times where language is concerned, and the negativity in our world can influence us more than we realize.

That’s one reason I left social media platforms laced with the stuff and am concerned about so many dynamics in our society today.

Family caregivers need more support, for sure - and legislative/other efforts to garner it are essential.

But it’s time to stop burdening us all with such burdensome terms in reference to something that’s part of the circle of life - and needs to be embraced with the grace and love we’ll someday need for ourselves.