Online caregiver communities: supporting each other

I used to feel lonely as a caregiver till I discovered that there are enough of us, and that there are communities–and even more important: we caregivers can form our own communities. Unfortunately though, caregivers don’t get together often enough, because caregiving is often hidden behind the scenes, even for serious and long-drawn illnesses.

In India, where looking after family members (whether a child or a spouse or a parent) is part of the expected duty, family members typically do not share their problems with “outsiders”, scared that they will be seen as unloving or as persons shirking their duty if they let even a bit of fatigue show. I think silence about caregiving actually worsens the quality of the care we can give our loved ones, because information, tips, and ideas do not get pooled, and care given by a family is restricted to what they can figure out by themselves (possibly in their overwhelmed state). In effect every family is forced to reinvent the wheel.

Contrast this to roles that are talked about openly– like “normal” child-rearing (not bringing up children with special needs, which remains in the shadows). For normal child-rearing, experience pools are easily available and can be accessed without shame.

We need communities and sharing for caregivers, too. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work.

Of course, given that caregivers remain invisible, it becomes even more challenging to collect enough caregivers to form a community, and then make members speak up and share 🙂

In the “Western” countries as we call them, support groups are relatively common. Caregiving is openly acknowledged as a role, and society accepts that caregivers need support. Such support is partly given by support groups that meet periodically to discuss topics and situations of mutual interest, get expert opinions, and relevant training.

In India, people assume that a “joint family system” provides all necessary support, and feel that outside help is not needed. Some even assume that if a caregiver needs help from outside the family, it indicates the decline of the joint family system, of culture, and all that. The mechanism of supporting caregivers is associated in part with a sense of inadequacy and “bad family” and shame for society as such; if our families were “good”, we would not need support from “outsiders”.

But taking care of a patient using unproven “instinct” is not the same as being an “informed” caregiver who understands the situation and challenges and uses suitable mechanisms and skills to help the patient.

Caregiver communities collectively enable caregivers to become better and more informed caregivers.

Given how difficult it is for caregivers to locate each other and coordinate meetings, in-person communities are difficult to form and sustain. Many caregiver groups that are started with the best of intentions start tapering off unless some volunteer/ caregiver makes it his or her life-mission to constantly induct new caregivers.

Because, you see, a caregiver community is an ever-changing community.

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