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

Denise

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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Denise

Hi Irene--Thanks so much for weighing in. When we effectively market to family caregivers, we reach them regardless of whether or not they self-identify. Our goal should be to reach family caregivers regardless of whether or not they call themselves \"caregiver.\" They shouldn't get help only after they identify as a family caregiver. They should get help. And, we should do a better job marketing to and reach them. It's not about whether or not family caregivers self-identify. It's how ineffective (or effective) our marketing programs may be.

PearLady

I really didn't in the past... closest I would say would be \"taking care of ___\". Someone recently identified me as \"the caregiver\"(IRL) and I was taken aback with a \"wow\" as I agreed. However, I think the term is still generic in many articles, so it's hard to identify and often misconstrued. Case in point: using the term caregiver as generic term for nurse or parent. It's so broad, it's like the phrase: \"all squares are rectangles\", but here [on this site and others like it], we remember also \"all rectangles are not squares\".

Sue

I think the social worker came into play at a MUCH later time with my parents. I think that is part of the problem with the way that elderly/adult care works in the health care system versus pediatrics. Upon arriving at the PICU, one of the first things that was done was meeting with the social worker. And that same social worker has followed us through the process, whether we were dealing with transplant or ENT or pneumonia, etc. With my parents, it is hard to know because I wasn't as involved early in the process. But, it seemed like they were not assigned a social worker until late in both their illnesses (not until my mom's last cancer surgery, when she was originally diagnosed with cancer almost 30 years ago and not until my dad was really showing signs of not being mobile). Whereas, I think if the social worker were a \"normal\" part of the health care system (e.g. you met with them once a year to see how things were going, what plans were being made, etc.) then it would seem \"normal\" and they would know the cases better. I also feel like my mom has worked with about four different social workers - a different one with every hospital stay or issue. And that means repeating everything, lack of knowledge, etc. \r\n\r\nI also feel like our social worker worked with all the external agencies, etc. FOR us. So, she talked to the Ronald McDonald House and got a room, etc. She or our case worker talked to our insurance company about supplies, etc. that were needed. My parents hospital seems to have a different person to talk to everywhere you go. We had a social worker in the hospital, but when he got to the skilled nursing facility, we had a different \"liaison\" there that we dealt with and then when we decided on board and care we had yet another \"liaison\" that we had to work with. It seems overly complicated and not at all friendly to someone like my mom who doesn't like to talk about the problems or ask for help, etc. I just think that having one assigned advocate who deals with the third parties would help a lot and make people like my mom feel more comfortable.

Denise

<a href='http://www.m40.siteground.biz/~caregiv6/members/g-j/' rel=\"nofollow\">@g-j</a> --I think you are right--I think many don't understand what you need. The genesis of \"caregivers don't self-identify\" started with a two non-profits who actually spent research dollars on this. Honestly, I think they were struggling with getting members (one was a membership organization) and I think saying they don't have members because family caregivers don't self-identify just made them feel better. I think many companies have struggled to reach family caregivers and it's easy to say \"family caregivers don't self-identify\" rather than the truth, which is \"We don't do a good job reaching out to family caregivers.\"\r\n\r\nThe irony of all this: One of the non-profit organizations had \"caregiver\" in its name. It recently changed its name, keeping \"caregiver\" in its name. This organization is the one that always says \"family caregivers don't self-identify.\" And, yet the organization keeps \"caregiver\" in its name. So odd.

Sue

I will say that when my daughter became sick we had an extremely good social worker who talked to us about the care we would be providing long term, what to expect, that it would be stressful, to seek the help and support of others (through internet, introducing us to other parents who had been in our situation, etc.). She was very good. But, I never identified as a \"caregiver\" - I was a mom of a chronically ill child. I didn't even think of the word caregiver until my mom's cancer became worse and my dad's dementia began - then that word made sense (because people are \"caregivers\" to the elderly in my mind). It was weird to then read stuff and say, \"oh yeah, I guess I am a caregiver to my daughter, as well as a mom.\" \r\n\r\nAs a communication professional, words and messages are my forte and I think that in many cases we want to be defined by our RELATIONSHIP to someone not by our SERVICE to that person. Our relationship is wife, partner, mother, daughter, etc. Our service is the caregiving. But, the relationship exists outside of that service and that is the role we want to hold on to. I also think that many of think of this as our responsibility - it is not a role we play in someone's life, but what we do because of that relationship. \r\n\r\nMy mom was really a caregiver to my dad for his whole life. She cooked him breakfast every morning before work, packed his lunch and made him dinner. She cleaned up after him, did his laundry, took care of him when he was sick. She was our caregiver the entire time we were growing up. But, that word doesn't make any sense until it becomes a NECESSITY - that those things CAN NOT be done by the other person. She was just a wife and a mom. \r\n\r\nAnyways, I don't know where I'm going with this, other than to say that marketing to people by their relationship and the diagnosis of their loved one may be a better technique. I am mother of an infant heart transplant recipient - that means something to me. I am the daughter of a cancer survivor/patient and a dementia patient. That also means something to me. After spending so much time on this website, the term caregiver makes total sense to me, but before that, this is what I would have said. So, maybe the FIRST message needs to be one toward a relationship and diagnosis and THEN they will see that they fit the role of caregiver.\r\n\r\nI also agree that the health care system could do a much better job.

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