The responses to my last post illustrate some of the many takes on the word "caregiver." I'm grateful for all of them. Intense feelings about who we care for often supercede more general ideas around "caregiving." So much so that any talk about grouping us together sometimes seems to detract from the individual experience.

At the same time, we know that parents of children with different illness or disabilities have a lot to share by way of information and support -- even though when we do go looking for others, our search usually follows along the trail of a particular medical issue.

So I'll be direct about the challenge of building the community for Carespace. I know that Carespace must be valuable and inviting to a mom and dad with an autistic child who want contact with others just like them. I also know that they may benefit from interaction with all sorts of moms and dads. (Not to mention that they may also be caring for an elderly relative.) But the reality today is that we haven't established the idea of a global community of "caregivers." It's not yet ingrained in the overall dialog. To make this concept useful, we'll have to discover the value of links between different "caring types." This is something most of us will have to experience before we take it for granted.

I have a related question, because I've been thinking about how bloggers could grow their audiences through the Carespace community: Do you believe that bloggers -- the vast majority of whom write about very specific illnesses or disabilities -- can or should play a significant role in broadening our perspective and creating helpful links between what are now separate camps of (what should we call ourselves?)  caregivers? Thanks in advance for your opinions!

Ron Slate

Comments

[Linda]

I do think that we have an obligation to try and bridge the gap between the different camps. Even though there are different challenges with different care receivers, every caregiver is susceptible to the same physical, emotional, and social factors. More importantly, I believe that by connecting all "caregivers." we can help caregivers take better care of themselves and the people they care for. Additionally, only caregivers understand what other caregivers are going through and all of us need those ears and support.

[Mark A. Smith]

The connondrum comes down to how we identify ourselves, and in our culture how it must be so individualized.
It really is the challenge of Carespace, and for bloggers to open peoples eyes to the reality that being a caregiver has nothing to do with who or what you are caregiving, but the act of caregiving.
Wether I am working with a family with a child with cerebral palsy, or with a child of a parent suffering from Alzheimer's. The job I must do will always encompass several key things; assessing their skills as caregivers, what are their emotional needs, what resources do they lack, give them props for what they are doing, and educating them on the disease process.
By clothing ourselves in individual identities, such as I am a parent of a special needs child, or I am in the sandwhich generation, is more of an attempt to be special, and often times they miss out on what professional caregivers have to offer them.
An old saying that I have heard, applies here. Getting caregivers from all types of environments is like herding cats.
As far as establishing a global community, I think you have to have time. Becoming the trusted one takes time. You have to bring people together gently, providing info and a place for specific types, and also offer generalized info and interactions.
Time is a big factor.... Caregivers have so little time, at least until they develop mindfulness. So they grab info on the fly. They gather info like the are going to the mini-mart and back. Get what they need now. In time, one begins to soften to the role. And patience and planning beyond the next meal and load of laundry begins to expand.
I imagine that using a new media outlet will be a similar experience.
I think as a culture we are maturing. With it the true sense of humanity, and that in this life there is God, family, and the earth That is is really all their, has begun to settle in.
Did you know that in South Africa, skilled nursing facilities are owned by their towns? The people have fund raisers and such to take care of them. They honor those that came before, and take care of them, as a community.

Being a caregiver is part of your role on this planet. It is one of the ways you give back.
Just have patience.

[Paula]

I am a technical consultant semi-retired Medicaid state department. Government programs struggle to value family and other "informal" care givers. The term "informal" does not value the tons of hours of blood, sweat and tears that go into caring for seniors, younger adults or children with special needs. My blog hopes to bridge the language between families and supportive others and the health care system so that services at home can be more meaningful. Visit my BLOG and share you ideas. GIVING AND RECEIVING HOME & COMMUNITY-BASED SERVICES at http://buildhcbs.blogspot.com/