Echoes across dementia caregivers, touching lives

I have been sharing my experiences as a dementia caregiver in India, but I am just one such caregiver. There are many more, most of them invisible, unheard, shrinking into anonymity while coping with their overwhelm. Caregiving is not recognized as a role in India. And sometimes, as Shikha Aleya has said, caregivers are invisible even to themselves.

When I began blogging about my experiences two-and-a-half years ago, I was desperate and wanted to use writing as a tool for catharsis and also to examine my feelings. I hoped writing would help me crawl back up into a more wholesome life. I had nothing to lose; there were no friends helping me, anyway. There was no harm in spilling it out. No risk.
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For Those New to Caregiving

A few days ago, a friend asked me to jot down thoughts I’d like to share with a newbie caregiver–someone thrust into caregiving that could be intense or extended, but was not restricted to caregiving for a dementia patient.

Here it is; if it seems useful to you, share the link with others. And I’d love to receive comments …(ETA: The PDF version is available here.)

Tips For Those New to Caregiving

By Swapna Kishore

Fifteen years ago, my father collapsed while getting up from a chair. A few hours later, instead of editing a document I had to submit to a client, I was trying to figure out how to look after someone bed-ridden thanks to a hip fracture. I assumed then that the situation was temporary, but as days, weeks, and months went by, my life kept changing to accommodate caregiving–first for my father, who never quite recovered, and then for my mother, who has dementia.

My caregiving journey is dotted with successes and failures, days of fulfillment and days of frustration. I’ve been sharing my experiences through my blog and website, and in support group meetings.  Some days ago, a friend asked me to jot down suggestions for people newly thrust into the role of caregiving. Here is what I think…

Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/ skills/ good luck) as persons who may need to provide such care.
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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.
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a community of caregivers

It was just over an year ago that I felt alone as a caregiver. Not so now. The community of caregivers is scattered around me, people performing a role that demands extreme empathy and involves overwhelm.

Yes, caregivers end up living a life with priorities and perspectives very different from others around them.  But we can connect with each other, share tips, share both the joys and travails of caregiving. We can be there for others who are just embarking on this journey.

And through honest sharing of our experiences, we can make the journey easier for others.

A few weeks ago, through a comment on my blog, I connected with Ekta Hattangady from Ahmedabad.

Ekta was thrust into a caregiving role for her mother (an Alzheimer’s patient) at an age when most girls are handling adolescence problems and excitement. She was 13 when her mother (then 42 years old) was diagnosed as suffering from Alzheimer’s Disease. Her mother died after six years, and these six years of caregiving have left Ekta with experiences that have stayed close to her heart. The deep empathy required, as well as the sense of overwhelm and loneliness have made Ekta determined to do something for care-givers. She hopes she can help others who suffer as she did.

Read her honest and touching poem on caregiving

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