ARGH!!! to "Family Caregivers Don't Self-Identify"

Denise
The idea that family caregivers don't get help because they don't self-identify makes me crazy. The idea that family caregivers do not seek out help for themselves because they don't self-identify makes me crazy.


I love when new research comes out about caregiving. I love the press coverage, the analysis, the conversation. I love to hear the perspectives about a topic that I talk to myself about all the time.

So, I've been following the discussion about research released yesterday by Pew Research Center. While I love all the focus on caregiving, I find myself getting frustrated by a comment I first heard more than a decade ago that I kept hoping would go away but still sticks around:

Family caregivers don't self identity.

Meaning, you don't call yourself a family caregiver. This becomes an issue because the thinking is that you don't reach for solutions and find support because you don't call yourself a "caregiver." In essence, you aren't getting the help you need because you don't call yourself what businesses and professionals call you (a family caregiver). I first wrote about why this makes me crazy in my 2005 commentary, Inside the Community of Caregiving.

For years, this made me nuts because I believe whether or not you self-identify as a family caregiver is only relevant when discussed as a marketing problem companies and organizations must solve. Meaning, it's not your fault you're not getting help. It's us--those companies and organizations which create products and services meant to help you.

I do think it's important to have a discussion about the words you use to describe what you're going through. Any company or organization which offers services, products or tools to help you must speak your language. If we're not speaking your language, if we don't know how reach you, well, that's on us, not you. The problem isn't that you don't self-identify, it's that we don't use the words to compel you to use our products or services or tools. We don't offer something that you feel relates to your situation or that you believe will help you.

Here's another way to look at it: Does Coke say it can't sell its product to you because you don't self-identify as a Coke drinker? Of course not. Coke creates a marketing and advertising campaign that makes you want to drink Coke. You didn't have a taste for Coke until after the company shows you how much you have a taste for one. After you drink Coke and like it, then you become a person who drinks Coke. You self-identity as preferring Coke.

(There's much more to this marketing problem, including that I think caregiving causes you to withdraw, but that's for another time.)

After today's video chat with G-J and Heather about managing after the diagnosis, it dawned me that there's another reason why this discussion about whether or not you self-identify bothers me.

Early on in your caregiving situation, you interacted with a professional who saw you in the role of family caregiver. The doctor spoke with you during your caree's doctor's appointment. The charge nurse answered your questions about your caree's night in the hospital. A home health agency scheduled help for your caree.

At least one professional, early on in your caregiving experience, saw you actively engaged in your role as a family caregiver.

And, I can bet no one gave you any information or resources or help. I bet no one said to you, "You're probably feeling some stress helping out. When you leave, the office manager will share a resource list to help you."

So, not only is this about a company's marketing short-comings but it's about a health care system failure.

It does not matter whether or not you self identify. It only matters that on a regular basis, the system fails you by not giving you what you need when it sees you as who you are--a family caregiver.

I would love if, instead of "family caregivers don't self-identify," I heard:

Companies and social services agencies don't know how to market to family caregivers.

And,

The health care system fails family caregivers every time they accompany their carees to a doctor's appointment, their caree is hospitalized and they purchase a service for their carees.

Now, that's a conversation that needs attention. Not whether or not you self identify. But, how we (the health care system, social service agencies, companies) do not help you the moment we see you in your caregiving role.

It's not your fault that the system fails you, over and over and over.

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