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How changing the language of family caregiving can benefit us all

My plunge into the language of family caregiving began when I spotted a post on Twitter recently, as I noted in my Perspectives column this week.

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 reference of my own: the “burden of family caregiving.”

Similar to what Debra did, I 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 such evidence-based descriptions of the need for more support for family caregivers is a positive thing, I worry about the negative connotations used to communicate it.

This reference is also commonly used in consumer-focused outlets with a cross-section of readers—including those who may either be caregivers or someone receiving care.

Whatever the context, 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 it communicates to those receiving care that they have indeed become what they always feared they would someday be: a burden.

Caregiving language matters

As I noted in my column, I’m not trying to minimize how challenging caregiving can be—because I’ve been there myself. But I think language matters and influences our perspectives 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 expression that Winnie-the-Pooh would’ve chided his friend for.

Unfortunately, that term is all too common—perhaps because our elders are surrounded by a “me” 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.

Instead, they should be honored, respected, and cherished as the family matriarchs and patriarchs we’re blessed to still have in our midst.

Family caregiving as a team

Pretty woman in purple top and her daughter smiling

My mom didn’t plan to live with us because she wanted to maintain her independence and didn’t want to be a “burden.”

I’m so grateful she was willing to reconsider after changes to her health, 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 of that as a team, which allows me to look back and savor the gift of having had her with us for nearly a decade. She was quite independent for many years, but as her health declined, it was wonderful for us all to be under the same roof so she could have the help she needed—and I could worry less.

Getting to care for my mom was a blessing and privilege beyond what I can describe. The one thing I really needed to do in this life.

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

But that’s true for most things in life filled with value and reward.

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 hardship that appeared out of nowhere?

Did we not think they would get older and someday need care?

Do we think we’re not getting older and will someday be in the same boat?

Now, I’m not trying to oversimplify things or suggest that every family should be able to make the shift to caring for an aging parent in their home full time, since there are so many variables that play into that scenario.

And when family caregivers have a loved one residing in a skilled care facility, the challenges are stressful in different ways—including the need to trust someone else with their loved one’s care. Many long to care for their mom or dad at home, but sometimes it’s just not possible, and that can be heartbreaking, too.

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 recently left Facebook—and why I’m concerned about many dynamics in our society today.

I know the reality is that caregiving can be overwhelming, exhausting, and financially draining for many families—so there is a dire need for more support. Legislative and other efforts to garner it are essential.

But it’s time to stop burdening us all with such burdensome terms in reference to a natural and expected season in the circle of life—which can be a sacred and beautiful one, too.

That is, if we’ll only embrace it in more positive terms—and the grace and love we’ll someday need for ourselves.

How about you?

What are your feelings about the language of family caregiving? Please join the discussion by commenting below.

Post feature photo by Rod Long on Unsplash.

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