Recently I had a conversation with Nell Casey, the healthcare journalist who edited An Uncertain Inheritance: Writers on Caring for Family (William Morrow 2007). Nell mentioned in passing that "people generally don't call themselves out as 'caregivers.' " There seems to be a gap between how people who care for loved ones think of themselves, and how thought- and influence-leaders describe the community at large. And that's just the point. To influence policy and practice, leaders employ the term "caregiver" to distinguish millions of people from the overall population and to suggest their commonality. But the ones caring for a child with special needs or a grandparent with dementia think of themselves as people, not caregivers. People selling things on EBay don't think of themselves as "auctioneers." A person posting a video on YouTube doesn't think of himself as a "videographer." But if these people needed laws passed in Congress, their lobbyists might use such labels.

It's a plain fact that huge parts of a population may not get recognition until their interactions become visible to everyone else. Not long ago, teenagers and college kids weren't seen as a powerful group by marketeers. Today, youth culture deeply affects the culture as a whole. Just look at Barak Obama's appeal to youth and how far it's taken him. Facebook, as a networking location on the web, has played a big role in turning "young people" into what everyone else sees as a group phenomenon.

But "caregivers" haven't yet reached this level of group identity. We haven't yet had adequate ways of finding and reaching each other -- and the world of service and product providers hasn't yet created a productive dialog with us. The community at Carespace has the chance to make a dramatic difference, just as YouTube and Facebook have. 

Do you have an insight as to why caregivers don't call themselves out as such?

Ron Slate, CMO, Carespace

Comments

[Deb]

I am the parent of a special needs child. I think as parent, we identify as a parent and this is our duty as a parent of any child.

I think when i was a caretaker for my grandmother and mother before they died, even though you SHOULD take care of family, its really optional. So I think its different for parents taking care of children, versus children taking care of parents.

I also think there is a somewhat negative connotation given to caretakers. Even though the adjectives used to describe a caretaker is often the same words I would use to describe myself, but I am trying to stay positive.

The words would be things like...tired, overwhelmed, stressed, underappreciated, giving but never being given to, financially strapped and so forth. I think thats the image of a caretaker. And while those things may be true at times, or all the time, you can't keep caretaking if you are caught up in the negativity of it. You have to stay positive because that person is counting on you.

that said, I still think carespace is a great idea! I don't see your name as a negative. But I can understand your concern if people don't identify themselves as caregivers.

deb

[Richard Anderson]

It's a chicken and egg situation. For family caregivers to be recognized as a group, they need to call themselves by that name... yet, as you say, many do not. I'm the President of the Well Spouse Association, and we offer peer support to spousal caregivers, a distinct subset of family caregivers. SCs indeed, have been shown to take longer than other FCs to self-identify.

What to do? Keep talking about it, make the point over and over, in the press, on the Web, in personal conversations, interviews, etc. Eventually, the word will get around.

The model for social changes: attitudes toward smoking. Thirty or forty years ago it used to be cool to smoke. Now, anti-smoking bylaws are being passed all over North America and also are appearing in Europe. How did this happen? By a few people, then more and more, talking about the problem of smoking, and of second-hand smoke. Now, Dana Reeve dying of lung cancer is a powerful symbol of that change in attitude.

And BTW, I just read today, that lung cancer claims far more victims than breast cancer, prostate and colon cancer, all three combined. Yet where are the marches against lung cancer? That will come.

[Brittany Hudson]

For me, since I am not politically active or active in the "Caregiving" community, I didn't know that is what I was called. Also, I am a Caregiver of a sick spouse. He does function well physically so what I really give him care on is his emotionally well-being around accepting his life-threatening illness. Those are my thoughts from a Caregiver who didn't know I was one.

[Floyd Skloot]

All labels are inherently reductive. "Caregiver" strikes me as being at least as descriptive and functional as some alternatives that come to mind, "health support person" or "advocate" or "provider of regular care". It's a useful enough label, brief and relevant to the way medical data is gathered. I've been disabled for 20 years, and what I know for sure is that the intimate support provided by my wife, daughter, friends, and medical professionals has been essential to my functioning. I would never call them "caregivers" except in the context of a public, political collecting of information, but that is an important realm.

[Mark A. Smith]

As a healthcare worker in the Home Care environment, I am a professional caregiver.
Working and assisting families and individuals to gain the necessary skills, knowledge, and find access to the right resources to be great caregivers to themselves or their loved ones, the idea that they or I am a group or we need to be identified as one is strange.
Recognition is not part, or have anything to do with being a caregiver. You do it because people are in need. We are trying to prevent or ease others suffering.
The amazing families I work with that provide amazing amounts of support and love to their loved ones, due because that is what you are supposed to do.
Through the last 40+years all the standards, codes, and value systems have been abused or abandoned. All in the name of individual freedom and individuality.
There still are people out there that live by an unwritten code. A basic human standard, that is not taught, but awakened. These are the people that are caregivers. When a child is born, in some people a switch turns on, and as a parent or family member they just know that whatever it takes, whatever is needed. It can and will be done.
Some people still have that feeling about love, and their parents. That whatever my spouse, wife, lover, parent needs, in their time of need, I will get it done. I will find a way.
IT is trully about compassion, and unselfishness, that is not media friendly.
Their is no recognition needed, because they do it from their heart.
I think, that for those people that cannot sacrifice themselves to help others, their needs to be an awareness for the exploding costs and constraints on assisting people.
Why for the selfish, because they are the ones that will have to hire people to care for them. Sure even the most loving people, have to hire a helper or two. But, those who have shared compassion, nearly always have compassionate family members that take them in, so they don't have to live in nursing homes and such.
For the old saying is true, you cannot buy love. You have to give to receive.
Be a caregiver from your heart.
Leave recognition for those that are empty.