Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry)

It’s over six years since I started sharing my experiences and thoughts on dementia care, and it has been a strange, unexpected journey. As I step back a bit to consolidate, I’m using a two-part blog post to document what I’d done so far and what I am considering for the future.

In this part, I write about what I’ve done so far, what influenced my choices about sharing and my chosen way of sharing, and some data on where I am right now.

The unplanned beginning

My mother’s dementia symptoms had no clear onset; they crept up and kept growing till they took away pieces of her life and mine. I was clueless, unprepared, and unsupported. The dementia symptoms were devastating enough, but the lack of awareness and support around us made coping far more difficult. Even when my mother’s dementia reached mid-stage and she required full-time attention and availability, people around me were disbelieving, critical, or busy in their own work and priorities. Sometimes my mother and I would end up spending stretches of days with no one but each other for company. I was perpetually exhausted.

I began a few tentative blog entries around mid-2008, just to feel less alone. I didn’t expect anyone to read what I wrote; I didn’t even want anyone to read it. My sporadic blog elicited occasional emails from persons saying they could relate to the situations I described in my posts. The catharsis provided me enough relief to become more proactive about my caregiving role. I read more books, even attended a conference and some caregiver training. I realized that, like me, many caregivers experienced isolation and overwhelm. I began thinking, “No one should be so alone through such stuff,” and then, “Would my sharing my experiences help?”

The nature of my participation began changing slowly, over the months. Whereas earlier I read books, and attended courses and support groups to pick tips for myself, I began doing so to share with others and support them. I equipped myself by reading voraciously, exchanging ideas whenever I could, and even attending a “master trainer” course, intended to “train the trainer.” My understanding improved, I felt more involved, and my canvas widened.

I was still performing the actual care tasks for my mother on many days, and coordinating them on others. I had to remain alert about crisis, and available at short notice, but my support had improved because my husband had adjusted his travel and workload so that we could take turns/ share the work, and I had also got a competent attendant who genuinely cared for my mother. It was possible to take out some relatively worry-free hours for other work.

So there I was, feeling more involved and determined to do my bit, looking for ways to contribute. Blogging and content creation seemed a good way to do so.

The pieces of work added up

My online work has essentially been built as a series of small steps, all done from my desk at home. I picked up work I could usually break up into pieces I could squeeze into available time, stopped when I was busy with care and other responsibilities, picked up when I had some spare time or energy. I could pace my involvement.

My blog was a collection of random personal thoughts, and as my blog picked up pace, I began thinking about the lack of structured material. I had always been unhappy that the available material on dementia care was not tuned for India because it assumed a different social context, a different culture, and a different level of institutional support. I thought about creating more suitable material but lacked the confidence to proceed. I was also unsure whether I’d have the energy to do a reasonable coverage. It seemed too vast a topic, and though I was better informed now, at times I felt like a helpless caregiver, not someone confident enough to undertake such a project.

Even so, I sometimes caught myself mentally drafting material suitable for a caregiver in India, written from a caregiver perspective. And then, one day, I thought of a structure to fit those (still only in my mind) pages. I already had a personal site, and I could add a section on dementia to it. It was just a matter of typing what was in my mind. I took the plunge. A fortnight or so later, I had created a section on dementia on my personal website. This was around the beginning of 2010. I felt so diffident about my audacity (of creating material) that I didn’t do much publicity, and was scared someone would read the pages and find them useless or bad.

But the stream of ideas would not stop. I felt I should have done more pages, a better and more complete job. And I felt that dementia care in India was a large and important topic that deserved a site of its own, not merely a side-show on a personal site.

As before, I was not sure whether I wanted to do the work. I had no idea whether it would help anyone; I had absolutely no reason to believe anyone would even bother to read it. On some days I was scared that if I set up a website and no one came, my work would be a waste. On other days, I was scared that I would create something awful and full of mistakes and that someone (huge and powerful and authoritative) would publicly humiliate me for being presumptuous enough to create a website. I was apprehensive whenever I thought of it, which was often. Because, again, I was mentally drafting more and more pages of what such a site could contain. Ideas abounded, as did doubts. The site would need some illustrations; could I draw them? The site should include interviews; how would I get them, why would anyone talk to me? Would I have the stamina to put together so many pages? My caregiving responsibilities were increasing….Did I really need yet another stress in my life?

I think it took around four months of mental drafts and structuring before I felt my brain would boil over if I did nothing, and so I began actual drafting. And it took some more time before I took the plunge to ask a volunteer I knew for some help in identifying caregivers who may be willing to give interviews. Then I picked up pace and started approaching some caregivers and others on my own, too. Creating online material required learning a lot of technical stuff and I did it in small packets. I remained conflicted about the whole idea: I was scared that I would be visible, and scared that I would not. I would work in spurts, then stop, never quite sure I would actually let the site go live. But the matter was now there, the background work done. One day I told myself, see, if it doesn’t work out, I’ll just delete the site. It’s not like I’ve taken any funds from anyone or that I owe anything to anyone. No one needs to know that I tried something and failed.

So I tamped down my personal website section on dementia, and geared up to make the full-fledged website operational.

Dementia Care Notes went live in the later part of 2010, a site reasonably complete but somewhat different from what it is today. There was barely a trickle of visitors for several months. I thought I’d sunk in a huge amount of energy into something useless. Worse, some site features required a lot of ongoing effort. For example, that initial site included a section with commentaries and summaries on latest published research papers, as well as promptly updated summaries of dementia-related news from India. This type of feature sucked up a lot of energy, and I started regretting my decision to have a site at all. No visitors, and a lot of energy being spent. What a fool I’d been.

But there was no point pulling off the site, either. So I streamlined the back-end and rethought the content approach. I removed items I considered low “value-add” and also removed content of the sort already present at many other sites (research summaries, for example). I added more material specifically meant for caregivers in India. I expanded pages, and created and added illustrations. Since I didn’t have enough of a personal or “social network” contacts to help me spread the word, I began reading up basic concepts related to search engine visibility. Miles to go, and all that…

Dementia Care Notes was an English site. It took a while for me to realize that I should be considering a Hindi site, and also videos in English and Hindi. For every new type of content preparation and presentation, I went through the usual agony of hesitation, followed by weeks of mental drafting, and so on, before taking the plunge.

I began creating and adding English and Hindi videos to Youtube around later part of 2011, one video at a time, with the video releases often spaced out by months. (Two channels: my personal interviews and videos with information and suggestions for caregivers ). My Dementia Hindi website went live in early 2012. Sometime along the line I realized that some of my material may be interesting to volunteers who wanted to help caregivers. So I put together a section for volunteers, this time on my blog (currently at: Resources for Volunteers). I hesitated a lot for this, too, but then as always I thought, if it doesn’t work out, I’ll just delete the pages. And I kept uploading my presentations on Slideshare, too, just so they were available if someone wanted to have a look. Very recently, I also began posting on a Hindi blog.

My confidence increased along the way as I was able to connect with many caregivers and others, and thus able to improve/ validate my understanding. I kept amending and improving my material alongside, and I now make it a point to periodically review all my website material to ensure it reflects whatever I know and can suggest based on my updated understanding. But I also know that I am not an expert and that my knowledge can never be complete.

Along the way I have ended up with more visibility than I feel comfortable with. This visibility has meant getting calls/ emails for an interview or so sometimes, or an invitation to speak at a conference or to coordinate a meeting. I go through an agonizing process every time I respond–on one hand, I know that, given my concern about this area, I should speak up, but on the other hand, I want to curl up and hide. I end up speaking, but I need a lot of preparation time to psych myself up for the event, and I need a wind-down time to recover. Each such interaction drains me.

To create online resources, I have needed to learn several new skills; the effort has been substantial. I have done all the work alone, not just the writing. For example, I learned about setting up websites and hosting. I learned about WordPress and its plugins and themes, decided what would suit my site, etc. For illustrations, I had to conceptualize them, and learn enough about graphics packages to actually draw them. When I decided to create videos, I had to learn about audio recording and editing, and video recording and editing, screen captures, and so on. And then there were the loads of things needed to keep the site operational and safe and backed up and so on… As I did not know anyone else using a similar approach, I didn’t just have to learn the skills, I had to first identify which skills were relevant and locate suitable resources for them. The process was invigorating, but also somewhat lonely.

I didn’t just learn based on what I wanted to make, I have been doing a lot of exploratory learning, too, so as to understand the possibilities and have a wider perspective about the context as such. I keep myself informed on areas directly or indirectly affecting my dementia work. I keep up-to-date with discussions, books, papers, and reports on dementia care, and also do small courses on topics that ensure I can follow discussions reasonably well; this includes health and medicine related areas and also areas on possible ways to convey messages–a vast range of topics like social psychology, critical thinking, online instruction, technology and media, and so on. Part of this helps me refine what I am doing; part helps me glimpse at potential areas of work; and part of it never gets used, but I don’t know what will turn out to be useful and what will not.

Some data:

I have no targets as such, but I glance occasionally at what I’ve done to see where I am. Here’s some data (as of the day of writing this blog entry):

I also respond to emails and interact on social media with caregivers, and once in a while, participate in conferences or training programs or support group meetings. I end up interacting with many concerned persons–volunteers, students, others. A quick glance at my email folder shows the emails exchanged run into thousands. And then there are the one-on-one face-to-face interactions with caregivers. It’s frightening.

All said, the numbers I share above are not particularly large. Many persons have distinctly more impressive stats for their work, and bigger social circles, and more connections. Me, I’m constrained by my diffidence and lack of targets and ambition. All that inspirational talk on “be the change” and “be positive” and how people want to “make a difference” doesn’t touch me; my sole motivation is a sense that I have no justification to waste my knowledge and skills. I cannot face myself if I know I could have tried to do something and I let my self-doubt hamper me. I may not end up being as bold as others are, but I try to stretch myself to the extent I can.

Someone once asked me, a few years ago, if I was satisfied with the stats and I had told him that, given that I had no reason to believe people would visit any material I prepared, the numbers were nice. The numbers were comfortably higher than zero, and zero is what the viewership would have been if I had chosen to not write. I marvel that I managed to get any audience at all, given that I was just someone typing away on her laptop.

That “it’s greater than zero” was not some cool, wise answer, or even a good one. It was a reflection of my utter cluelessness when I started work on dementia, my lack of a tangible target and my inability to have any dreams. I was a reluctant experimenter in an untried field. I had no baseline to use, no similar/ competing resource to compare myself with. The situation was trickier for Hindi material, which was a real shot-in-the-dark gamble. (When I see that the viewership of the Hindi material combines to over 30,000, I hope someone else decides that working in Indian languages is worth considering.)

My situation is different now. Even though I still have no targets and no basis for specific goals, I am aware that my choices involve trade-offs. I have too many ideas, far more than what I had when I started off. I know that chasing one idea, such as preparing a particular document, means I won’t be able to chase a different idea or prepare a different document. While I am now moderately comfortable with existing projects, I am also aware that, given my personality, I will go through an agonizing bout of self-doubt for any new project; it is a cost I pay for every initiative I take. I feel the need to make effective choices, because I know how limited my time and energy are. I’ll use the second part of this blog post for my thoughts on my future modality and effort.

Edited to add: The second part of this blog entry is now available at: Working for the dementia care domain: what next? (Part 2 of a two-part blog entry)

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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.

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