Caregiver Community Karma

I guess it has been a long time again since I posted here. After the last post, I thought I had nothing much left to say, well, nothing important, and nothing I hadn’t said before. Okay, so maybe I did have some thoughts, but nothing significant enough to write a blog post about. I was wrong; bulk and originality are not the only criteria to venture out into the cyber world…

The last few months, I used my spare energy to redesign my personal site. I added a whole bunch of pages on dementia and caregiving, with special focus on caregiving for dementia in India. In these pages, I consolidated and structured a lot of my own thoughts and also some information gathered over the last couple of years, as part of my interaction with other caregivers and with volunteers and professionals. I added resource pages (and was dismayed at how few caregiver resources were in India) and links to books and DVDs. Pages include stuff on how caregiving is different in India, and tips focused on that. I uploaded an awareness presentation I sometimes use. I also jotted down ideas for more updates later. I would, of course, welcome any ideas/ comments you have. [Edited to add: This post was made when I was still feeling my way around how to share information and suggestions with other caregivers. Much has happen since then, including creation of full-fledged websites, videos, presentations, etc. See Note below]

My intention as I worked on this was very simple: make my thoughts and data accessible for anyone who may happen to reach my page, either because they know me or someone directed them there, or a search engine threw up the site’s url. I have not yet thought of how to publicize the stuff; I have no idea how to go about such stuff. If even a few people benefited from my effort, it was effort well-spent.

And people have been contacting me every couple of weeks or so, people I don’t know, seekers who reached my site while they desperately surfed for resources for dementia and caregiving in India. Some were helped by what I had put forth, and some wanted more help (and I tried my best to find out the additional data they wanted).

Today’s post is stirred by one such contact.

A few days ago, a visitor arrived at my site courtesy a search engine. She wrote to me. I wrote back. I learned that she, along with some friends, is proposing to put up a community that links caregivers in India and also provides them support; the name is Caregivers Link. To begin work on this project, the Caregivers Link Team  was gathering data and wanted to reach out to as many people as they could–caregivers, their family/ friends, volunteers, professionals, even employers who have employees who are caregivers. Sure enough, I was interested. I sent out the mailer the team sent, and I even put up a page on my website with their message.(Their website is at http://caregiverslinkonline.com )

I hope people will respond and give the Caregivers Link team the data they need. But I am not sure people will. You see, I used to be one of those people who would get a mail, find it good, but somehow not get around to actually participating. I would intend to, but well, it would slip.I would tell myself, so many others must be writing, what difference would one additional data point make? Then the date would be over, and I had a legitimate reason not to put in the effort.

This is what may happen:  Caregivers may be too busy to even write a few lines back. They may think this community may not be available to them in time–they need help now, urgently. They are overwhelmed. Their friends and family, well, they’d like to..but it is amazing how time flows, no? Ditto professionals and employers. Most surveys of this sort suffer because of this reluctance to inconvenience oneself for a good cause if there is no one nagging you to participate. Participating in these things just keep getting postponed.

The last few years have changed my way of thinking.

I am a caregiver. I have been one for years now. And even when this phase of my life is over, it is possible I will be thrust in this role again for someone else. Or that someone else will become my caregiver. And one think I can tell you from experience–caregivers need help. I need help as a caregiver, and I would like my caregiver to have help so that he/ she can look after me and himself/ herself better when I am the one who needs to be looked after.

Having been on the other side for a while, having tried to get information and gather people, I have a different view now. I know now that each participant matters. Each opinion counts, each suggestion helps.

Fact: caregiving is far more common as a role than people admit. Somehow, in India, we behave as if there are no caregivers. We take it for granted that when someone is seriously ill, the family will rally around and do whatever is needed, regardless of the stress, regardless of the tremendous amounts of adjustment and compromises. Outsiders don’t even acknowledge how difficult it is; some may sermonize that the caregiver is only doing his or her duty. Sure, right. But don’t the people around also have a “duty” to make caring easier and more pleasant?

The chances are, dear reader, that you are a caregiver or have been one. Or that you know someone (someone you like, who is close to you) who is or was one. Or that you know a patient who is being cared for, and the patient is someone close to you. And even if caregiving has not touched your life yet, it will some day, as caregiver or patient or as someone close to one. Caregiving is just one illness, one accident away. After all, we all grow old, we fall ill, we need to go gently into the night, and the journey is not always pleasant.

I do not know the shape Caregivers Link will take once it is operational. The idea is good, and one whose time has definitely come. The team is committed and sincere. I definitely wish this team the very best. I want such communities to flourish; I have a stake in their success, and so I will help. I think we all should, to the extent we can. The way I see it is, if some people are concerned and committed enough to work in this area, our helping them creates an environment that overall improves the quality of care around us. It creates an awareness. Every effort helps, every person working in this field helps.

Some day, you and I may benefit because we took the time to put down our thoughts and pass them to people who were able to do something with them.

So, check out their questionnaire.  If you do not have time to fill in the questionnaire, just e-mail to them to touch base with them, share your thoughts. Every input counts. Every thought matters. And spread the word about it. And if there are other such efforts, such initiatives, don’t just smile and nod approvingly and ignore them. Open out with your hearts, your thoughts, that small sliver of your time that will help them. Earn some community-creating karma. Some day it may improve your life or the life of someone close to you.

Edited to add: I now have a separate, dedicated website for dementia care in India at Dementia Care Notes, India(and a Hindi version of it, too, at Dementia Hindi). The link I(here) will provide you information on these and other the online resources I have created for dementia care in India.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

5 Responses to Caregiver Community Karma

  1. Janet Sunita says:

    Many many thanks Swapna!!

  2. Runa Sood says:

    In a country that is drowning in the helplessness of multitudes whose voices aren’t heard , needs aren’t recognized , this is a push in the right direction . Caregivers are angels – often with clipped wings . Community support – as for any human effort – can provide the help they need , to do the work they often must . That life thrusts upon them . Sometimes , there are no choices . You do what you have to and it is seldom the easy way .
    Thanks for caring enough to care about the caregivers !

  3. sebin kuriakose says:

    i would like to know more about this behavioral interventions of family caregivers of dementia patients,
    by
    sebin kuriakose
    MSc nursing, psychiatry

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