On this blog, my current focus, and such things

It’s been a while since I blogged, so here’s an update on my intentions and directions, this blog, and such stuff. But first, please note that while my blogging is less frequent, I am still very active in the dementia domain and I respond promptly when contacted–so please don’t hesitate to get in touch with me. (read about what I do here)

When I began this blog, I was my mother’s caregiver. At that time, I was overwhelmed with the care work and trying to get a sense of balance in my life. My initial entries were on my situation at that time, and my memories and understanding of my care journey till then. I shared these under the broad category Caring for mother (including Dementia Diagnosis, Living with dementia, Challenging Behavior, People around us, Adapting home and life, Late stage care). I also shared my Musings of a caregiver (including topics like Caregiver role, Caregiver isolation, Fulfilment in caregiving, Pondering about dementia, aging, and caregiving, etc). These personal entries, over 150 of them, span well over a decade long dementia care journey.

As I became more informed, I began creating content that could help other caregivers (and later, volunteers). I blogged to share thoughts and observations about dementia care in India, provide links to my work, and so on. (See Topics on the Blog for more).

When my mother died around four years ago, I lost the person closest to me. My main role—being a primary caregiver – had disappeared. Blogging about my loss and disorientation helped me through this transition.

Blogs evolve with the life of the blogger. The shifting profile of my blog entries reflect that. In the initial phase, I had many years of past events to explore and share. Once I caught up with sharing those memories, my later entries have mainly been around ongoing concerns, observations, and work.

My broad concerns regarding the dementia domain have remained much the same for last few years, and so has my personality. I am a self-doubting introvert trying to contribute. I remain an unhappy realist in how I view the state of dementia awareness and support in India. The paucity of information and services still deeply concerns me. However, I no longer create blog entries focused on these aspects, because that gets boringly repetitive.

My current focus is still content creation, keeping old content up-to-date, and interacting with persons who contact (more on my current work here). I’m also working more on my Hindi blog.

I now blog only for significant milestones and completed projects that warrant a blog-style entry. I use Facebook to share ongoing content creation and also to share thoughts, concerns, and queries where I need faster feedback. (You can connect personally with me on Facebook, or “like” my Dementia Care Notes Facebook page). I may resume frequent blogging here if some concept or topic that fires me up requires a longer format for expressing it. If you “follow” this blog, you will get notifications whenever I post.

Meanwhile, please look at the stuff I’ve already shared (check the menu or side bar of the blog, or see the Topics page). And get in touch with me if you want. Thanks!

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Working for the dementia care domain: what next? (Part 2 of a two-part blog entry)

I am currently trying to decide the focus of my future dementia-related work. I have limited energy and time available for dementia work, and so I need to make deliberate decisions on where to use them. Keeping my current online resources usable and relevant needs some ongoing effort (content updates, back-end maintenance etc.) and I also have to tackle queries I get, but where should I put my additional time and energy? Should I improve these existing online resources by adding similar content or enhancing existing content? Or should I work on something different?

(This is the second part of a two-part blog entry: The first part can be read here: Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry))

Fact is, I have many vague, unformed ideas, and there is no way I can explore all of them (let alone implement them all). I would like to make choices where I may be effective. And what is effective? I’m not sure how to define or determine that…but I assume effective choices will be the ones that create useful artifacts and efficiently use my skills and suit my personality. So here is what I know about my way of working and thinking.

I am an introvert and am most productive when working at my desk, doing intense work. I am not a socializer by nature. While I meet people and participate in events sometimes and enjoy such meetings, they also drain me. My choices need to exploit my ability to do concentrated work alone, and cannot depend on my “networking” or creating organizations or services or working in large teams. I am unambitious and don’t do well under pressure or targets. I can’t stay sane and productive in a competitive environment.

I want to remain focused on creation of content about dementia and care, suitable for persons in India. I am talking of content that can be directly understood and applied given our culture and context in India, and content that uses Indian metaphors, examples, language, etc. My experiment of creating material and the viewership tells me that this is a worthwhile target, with special mention of material created in Hindi, which has had over 30,000 views. Unfortunately, I don’t know of others who are convinced enough about this to actually actively create such content (usually, they refer people to a few well-known links from different countries without reading the articles/ manuals they are recommending). All this makes me feel I have even more reason to work in this area I consider important.

I believe technology is under-exploited for spreading information and providing support. I’m not an expert in technology, but I’m not afraid of it either, and I don’t hesitate when it comes to learning more about possibilities or implementation. I have picked up whatever technology I have need for my work so far, and am not scared by the thought that I may need to explore more technology options for some ideas I have. The potential of technology excites me and fascinates me, and is definitely something I’d consider while looking at options.

Productivity and effectiveness are major criteria for me. While I am willing to write and create material, I am a slow writer, and so I need to be careful about which writing projects to pick up. It would be silly to start something that requires several months unless I am sure I can do it, and that it is a better project compared to my other options. Making effective choices was not a major criteria in earlier days when I had no experience about such work, and not many ideas. But now I have many vague ideas and need to carefully select which to pursue.

I need to either locate a peer group or find some other way to brainstorm and evaluate ideas. So many things need to be done in the dementia domain that I cannot pick a random flavor-of-the-month are of work every month. Choices matter. Idea generation is not enough; I need good ways to perform idea evaluation and selection.

Over these past years, I’ve been in touch with many volunteers and wannabe volunteers who seem interested in dementia or caregivers or both. Usually, though, dementia is not their prime area and their approach is typically based on extroverted, networking-based solutions. They focus more on areas like “active ageing” and may even dilute or remove their overwhelmed-dementia caregiver focus over time. Some work in so many areas that I’m not even clear what their focus is. Understanding, measuring, or improving effectiveness is often not a concern. This means I do not have enough in common with them to discuss/ exchange ideas for my kind of involvement, as I focus only on dementia care.

Ideally, I’d like a reasonably-sized peer group of like-minded persons to remain motivated for my work and to discuss my ideas, joys and frustrations, but I have not yet found this group. I do have some friends with similar values, but they are scattered, not working in my focus area, and busy with their own initiatives and ideas. I can no longer assume I will manage to find an active peer group, and this lack affects my ability to process my ideas and act on them. It affects my pacing. I have no idea how to fulfill this gap.

I need enough time and energy for other (non-dementia) activities to get the emotional satisfaction I need When I first started blogging, I did that as catharsis, but as I increased my work and began actively helping others, I assumed I would get ongoing satisfaction and friendships. That’s not quite how things turned out. While I’ve had some interesting interactions and friendships with caregivers, our paths start diverging because I continue to work in dementia and others move on to their own areas of priority, leaving fewer areas of common interest. Interactions reduce over time. And while I am in touch with many concerned persons/ volunteers, again, most of them have very different interests and priorities and we don’t have enough depth of interaction for these to satisfy my need for intense friendships and emotional connection.

Dementia is not a cheerful area to work in. While some changes can improve the quality of life of the person with dementia and the family, there is an inherent downer in seeing someone fade out, stop responding, die. There is loss. There is grief. There is helplessness. Suggestions can make some difference, but the basic nature of the problem remains. People don’t contact me to share any good news; they contact when they are overwhelmed, stressed, unhappy. I find it frustrating to repeatedly see families face the same type of problem. I know how little the current support is, and how slow the rate of improvement in support systems and facilities is. While I feel some satisfaction when my suggestions and work are useful to others, this is overshadowed by my sense of helplessness and frustration. As this situation is unlikely to change, I need to spend time doing other (non-dementia) work or activities so make me feel connected and emotionally satisfied. I need to factor this in while seeing how much time I have available for dementia work.

Given my overall time/ energy availability, I have to choose whether to continue work to enhance my existing body of material, or whether to pick up some different type of content preparation. My impression right now (and this may change) is that my existing body of work can continue to help people so long as I do ongoing maintenance on it. It is reasonably complete as a unit of information for my target profile. (Some links to my existing body of work and recent viewership data are available here)Adding more material to it would be nice, but I believe I have reached the point of diminishing returns when it comes to investing time and effort in expanding my existing body of work. I am therefore interested in exploring whether I can work on a different, important area. However, I also need to remember that it takes me a lot of effort it to overcome self-doubt when venturing into any new area; any new venture/ project I consider should seem worth that emotional cost.

In my opinion, the most important aspect to address is dementia awareness, because awareness is pathetic in India, and awareness is the foundation on which everything else rests. I think we need ways to spread awareness about dementia amongst people who are not looking for information on dementia, and we need to reach out to multiple cross-sections of society. I am interested in seeing whether I can contribute to increasing dementia awareness. However, typical awareness campaigns include advertisements, walks, celebrity involvement, speeches, etc., and my personality does not match the skills needed for any of these. So my challenge is, can I contribute to spreading awareness given my personality and skill profile? Can I, as a self-funded solo worker, do something?

My current, tentative plan is letting myself freely think about potential areas of contribution rather than staying within some conventional framework. I’ve been using technology, specifically, the Internet, as a means for contributing for the last several years; developing material and making it available using the Internet also suits my personal work characteristics, and maybe, just maybe, I’ll find a way to extend this to work on some new area I consider important (such as dementia awareness). Maybe a few months down the line, I’ll have some idea on what to do.

And of course, if you have any suggestions that seem to fit my basic personality traits and my inclinations, please share them.

(This is the second part of a two-part blog entry: The first part can be read here: Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry))

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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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A personal update: two years after my mother’s death

It is two years since my mother’s death; I guess it is time for a personal update.

When, for years, I was immersed in caregiving, I’d not considered what would happen after my mother’s death–on how I would feel, and how I would adjust to the loss and my changed role and situation. I hadn’t expected the process to be so slow and fraught with confusion. Over these last two years, I have gone through various phases of emotional upheaval and readjustment. The process of adjustment continues.

Two years later, my mother is still a presence in my mind every day. Even if I am not actively thinking of her, I have a faint, dull awareness of her, a sort of feeling something’s missing in my life, a feeling that has taken me time to get used to, but which I accept.

I end up thinking more specifically about her quite often, too. I remember things she did for me, or arguments we had, or things we shared, and it has an air of reminiscence, gentle, sometimes amusing or heart-warming, sometimes mildly sad. These memories are reasonably matter-of-fact, and while not always easy, they seem a part of my past and my personality like many other things.

But sometimes I get yanked into memories that plunge me into a sharp sense of loss. It’s like a sore spot touched suddenly, a spot a splinter lies buried under, unknown to me. The emotion leaves me gasping, exhausted. It takes an effort to emerge from, spanning for several minutes, even hours, and often, though I know the feeling will subside, I still have to ride the wave and cannot rush the pace at which it subsides. These emotional plunges, though declining in intensity and duration, occur often enough for me to dread them.

I am aware now of the sort of events that trigger these disorienting episodes.

Meeting my mother’s peer group, for example, still reminds me of my loss and of the loss she suffered because of her dementia. Sure, life deals out different fates to different people, everyone has problems and setbacks, and even if she hadn’t got dementia, other problems would have happened. Yet I need several deep breaths to compose myself again.

The major trigger for such plunges is related to my continued work for dementia caregivers.

A significant part of my work involves maintaining my online resources for dementia caregivers in India (I have websites/ videos at Dementia Care Notes , Dementia Hindi, youtube videos on dementia and caregiving, and caregiving-related personal interviews). For this work, I keep myself up-to-date with recent discussions and studies on dementia care and also stay on the lookout for India-specific services and facilities. Many caregivers and other concerned persons contact me through my sites or this blog, and I try to share my experiences and ideas with them. During all this work, I am actively thinking of dementia and how it impacts the person and families, and naturally, this is emotionally and mentally tied with my experiences as both caregiver and volunteer.

For most part, while doing such volunteer work, I have sufficient insight and distance to productively use what I have experienced and studied. But sometimes a sentence/ factoid I read or an incident someone relates connects me a hurtful memory or emotion inside me and disturbs me with an unexpected intensity. Some days ago, I was talking to another caregiver alumnus who tries to help other caregivers and spread awareness by sharing personal caregiving anecdotes, and she told me that she experiences similar plunges and pain.

Here’s the thing: caregiver conversations are needed. It is only by openly talking about such things that we can spread awareness and improve the situation for persons with dementia and their carers. For the large part, at least in India, dementia is untalked about and invisible, and caregiver stories remain unspoken and unheard. Dementia awareness remains poor, misinformation remains rampant, and support systems remain non-existent. The number of people who need help is growing faster than sporadic attempts to add support services. This overall status saddens me on some days, and frustrates and angers me on others. It makes me want to withdraw on some days, while on other days, it energizes me to do what I can. I know that sharing my caregiving experiences can be helpful to others — my mother’s death does not mean that my caregiver experiences have become irrelevant — and I wish I were not hampered by hurtful memories.

I continue to search for the optimal level of involvement in dementia care, hoping to find a level where I am effective and productive, and also safe from burnout or depression. It would definitely be easier to do what I want to do if my mother’s memories were by-and-large peaceful, benignly swinging between my experiencing a gentle nostalgia and sensing her supportive and affectionate presence. It seems, though, that time heals rather slowly, and part of the delay is because I continue work in this domain (thus extending and reinforcing my identification with a caregiver identity and related experiences and memories).

When I was a caregiver, my work was determined by factors beyond my control and I knew an end would come. But in volunteer work, I have to set the pace and take the decisions.

Regarding other fronts: I continue to extend myself, experiment, and redefine my understanding of what I want to do with respect to non-dementia-related areas. This adds to some variety and enrichment (and fatigue 🙂 ) I have already realized that travel and sightseeing are pleasurable to me only in small doses. For most part, I prefer simple long walks or curling up with my Kindle. I have resumed professional writing but not yet attempted any ambitious creative writing that requires a larger mental canvas; this will have to wait till I become better at juggling time.

I’ve shared on this blog that I find it difficult to resume a social life, given that I am, anyway, an introvert. In the past few months, I’ve attempted some degree of socializing. I’ve peeped out of my shell and started saying hello, and risking mistakes on this front.

I could say I’m progressing one smile at a time 🙂

And I have been learning some new topics.

I’ve always been a curious person. For the last several months, I’ve been enrolling in free online courses (MOOCs) on a diverse range of topics. I felt like this kid let loose in a candy store, and I sort of overdid it, completing around 20 courses in nine months, and peeking in and attending parts of many more. I enjoyed the concentration and rigor some of the courses required, but yeah, the courses do require time and energy and I am whittling down the courses to a less obsessed level.

So yes, this is where I am two years down the line after my mother passed on: taking moderate steps of venturing out into the unknown, trying to find a sane place between integrating and drawing upon memories of my mother while not getting sucked into them. Looking for peace. Looking for balance. Still figuring out how to pace my dementia care support work so that I can sustain it without draining myself. I suspect this is not too different in essence from folks around me, because everyone has to do some such balancing act, for whatever situations and challenges life throws to them.

And BTW, I have not been posting as regularly to this blog as I used to earlier; this blog already has over 200 entries, and while I have many ideas for new blog entries, actual writing may be sporadic as I balance other work/ commitments, including ongoing dementia care work. You can always contact me if you want.

My online dementia resources (in addition to this blog)

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Dementia caregivers: some thoughts

Some months ago, I found myself wondering about how the term dementia caregivers is often used for the entire range of experiences and needs of caregivers trying to support persons with dementia. We have caregiver manuals, caregiver trainings, and many other resources aimed at this entity: dementia caregiver. But are all persons helping dementia patients called dementia caregivers? Are their situations and needs similar enough for the same caregiver training to benefit them all? What are the pros and cons of this label?

I’ve met a range of persons who consider themselves dementia caregivers. Some are busy with caregiving chores 36 hours a day. Some are more like supervisors for a team of hired attendants and support staff, managing the care and handling the responsibility, but not doing much of the hands-on work. Some are family members of the patient, living in the same house but not participating in the care unless there is a crisis (care is handled by a primary caregiver, and these persons are secondary caregivers). Some are long-distance caregivers living in a different city, but they make daily phone calls to talk to the person with dementia or the live-in sibling caregivers. There are male caregivers and female caregivers, caregivers who are teenagers, middle-aged, or elderly. And so on. The range of type of care and responsibility across “dementia caregivers” is wide. I’ve even met persons whose relative is living in a respite care, and they make weekly or fortnightly trips to meet them for a few hours, and they, too, consider themselves caregivers.

On the other hand, I’ve also met persons who are supporting someone with dementia for some hours a day or even full-time, but dislike the word “caregiver.” They see themselves as “family” and find the caregiver label insulting.

I’m sure there are formal definitions of the word caregiver, though perhaps not as formal or easy to apply as the word “engineer” or “doctor” or as relationships like “son” or “sister”. But persons who consider themselves caregivers don’t know or apply these formal definitions. Typically, they are close to someone with dementia, and they feel their actions and decisions affect this person, and so they consider themselves caregivers.

How important, then, is it for persons involved in the care of a person with dementia to consider themselves “caregivers”? Does it matter at all?

The way I see it, persons involved in the care of someone with dementia can handle this role and responsibility better if they have:

  • A good understanding of dementia and the way it impacts the person
  • Knowledge of various caregiving tools and techniques, such as ways to communicate, to help the person, to handle challenging behaviour, to make home empowering and safe for the person, and so on
  • A supportive environment with sufficient dementia awareness and also enough facilities and services

Regardless of whether a person supporting a dementia patient identifies with the “caregiver” label, this person can handle caregiving more easily and effectively with the help of the three things listed above. Using the “caregiver” label helps because it may help us seek knowledge and skills and services designed for caregivers. It gives an identity and enables approached others in similar situations and getting company and support. When persons providing care think of themselves as supportive family members, they may reject any tools or advice carrying the “caregiver” label and not see them as beneficial. For example, they may assume that all they need to help the patient is love and consideration, and ignore the benefit of communication techniques and tips to assist in daily activities. They may not appreciate that communicating with someone who has dementia may be different (compared to how we communicate with cognitively alert elders). They may not avail the pool of knowledge and tips that other caregivers have gathered.

One problem in my opinion is that most caregiver material is prepared for some generic caregiver, and usually does not discuss how to selectively use the material given the profile/ situation of the caregiver. For example, the needs of a youth caregiver looking after an elder with dementia would be different from that of an elderly spouse of a person with dementia. Caregivers have to sift through a caregiver manual to see what is applicable for them, and they may dismiss all advice because the first few pages they read look totally irrelevant. Also, volunteers who are supporting caregivers have to tune their advice rather than just assume the general advice will fit everyone.

Caregiver advice is definitely not a “one size fits all” and material designed for caregivers cannot be directly applicable for all caregiving situations.

In November 2013, I had the opportunity to speak at the 18th National Conference of the Alzheimer’s and Related Society of India (ARDSI), held in Guwahati (Assam) in November, 2013. The topic was “Who are we: Introducing the caregivers”, and I discussed some of the aspects I mention above. I’ve uploaded my presentation to slideshare.net and included it below. (You can also view it directly on slideshare.net at this link)

I’d like to add that caregiver material must also be tuned to the culture and country. This topic is so big that it deserves its own blog post. We know that care environments and challenges would be very different in a village in Madhya Pradesh compared to, say, a suburb of London. We need material that is easy to adjust and apply in our settings. We need material that understands our way of life, and our culture and society. Examples and case studies should be relevant for us. We need material in our Indian languages, and often this is not just a matter of translation, but of rewriting. But as I said, this is a topic by itself…and one I have written about before and will probably write about again.

Meanwhile, do feel free to share your comments below (remember, you can share your thoughts anonymously if you prefer)

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Dementia: the journey of caring continues

September 2013, the month earmarked as World Alzheimer’s Month with the theme, “A Journey of Caring” has come to a close, but as caregivers know, the journey of caring continues at its 36-hours-a-day pace, day after day, month after month, year after year. As media moves over to other causes, and weary volunteers rest their hoarse throats and tired legs, let’s pause to think how deep and lasting the impact of those awareness drives and calls for supportive policies will prove to be.

Focused efforts to bring dementia and care into the limelight help, of course. Reports like the World Alzheimer’s Report 2013 may nudge some policy makers to pay more importance to dementia. Awareness talks have been held, and maybe some person will get diagnosed earlier because of them, or some relatives and friends will feel more deeply for the persons with dementia and their caregivers and extend support. Newspaper reports include lists of symptoms and names of doctors and organizations, and maybe some persons will now know whom to approach.

How long, though, does the impact of such campaigns last in the public mind? Every day is some sort of World Day, every month is some sort of World Month. Will alertness and awareness continue without sustained effort and momentum?

See, here’s the thing: if we want a paradigm shift in the status of dementia and caregiving in India, more people must understand how dementia impacts the person and the family. This understanding forms the base for any support work. Given that most people are not in cities where walks and talks were held, and that even if they were, they did not attend, all they have is a couple of paragraphs on dementia in a newspaper article once a year. Is that enough to give the public a transformative understanding of dementia (do people even read newspapers so carefully)? Will the benefits percolate enough to change the lives of caregivers? Well…

As a caregiver, I often felt isolated and misunderstood, and as a volunteer who helps other caregivers, I find many fellow dementia caregivers in India feel the same. While some lucky caregivers get a supportive environment, the vast majority do not. Here are examples of what many caregivers say about the people around them (relatives and friends and even volunteers and professionals):

  • These people, they’ve never been caregivers, they just don’t understand
  • All that advice is so impractical. It’s obvious they’ve never done any caregiving
  • I went to a doctor and he didn’t know about dementia
  • I won’t talk to volunteers any more. They just give lectures
  • Why don’t people know more? No one should have to face so much ignorance
  • “They” (“Someone”/ “The Government”) should do something about it. How can we handle all this much work without any support?

Yup, it is true that persons who have never been caregivers cannot grasp how tough caregiving is, how heart-breaking, how tiring. They do not know how isolated and unsupported many of us feel. Two paragraphs in a newspaper once a year don’t give a flash of cosmic insight.

I often chat with caregivers who feel more should be done, and even some caregivers who want to do something themselves. They are currently overwhelmed with their caregiving work, but hope to do something later.

But often other things come in the way “later”, when their care responsibilities are over. Burnout, for example. Depression. The need to move on, the expectations of their friends, relatives, and colleagues that they will put away the “negative” thoughts and “be normal.” Or just the deep sorrow associated with even the word, dementia, the face that pops up in the mind, the memories. Sometimes even crippling guilt, though there is no ground for it after such hard work for so many years. Then they also need to renew their careers and make up for the lost years. And they have to take up roles and responsibilities they had suspended–they have to be a parent, spouse, sibling, child. Resume other volunteer work they had committed to. Do that much-neglected health check-up. And they may hesitate to be seen as a dementia caregiver in a society that acknowledges neither dementia nor the role of caregiving. Family members may discourage, saying, why talk about private things? Can’t you let it alone now? They may lack the energy to work around all this or to contribute anonymously…

Some caregivers share, but often in sporadic ways, localized within safe circles of supportive friends and relatives. Sustained effort is difficult to put in. And seeing that the overall momentum is low, others who may have shared also hesitate to step forward.

As caregivers, most of us have felt that only other caregivers can understand our situation. Yet we also expect that somehow, others will start understanding us, and that some “they” should make this shift in understanding possible. But I wonder, how can we expect others to understand if we don’t talk about it? How can people grasp the challenges of caregiving if they have not experienced it and if caregivers don’t speak up and share their stories?

It’s not easy to stand up and share one’s personal experiences of being a caregiver. I know, I have done it–not just in online blogs but in face-to-face sessions with volunteers and while talking to reporters. I’ve done it again and again, and it has never been easy. I find it very hurtful to talk about some things. Sometimes I face scepticism or criticism, and that hurts. Sometimes listeners say I am “negative” without realizing that I don’t actually want to go back to those memories. A doctor once told me (in a workshop) that I was misleading people by describing the challenges of caregiving because taking care of elders was every family’s duty and people should do it without expecting anything from others. Families should not expect or need support, he told me and the audience. So yes, it hurts to talk openly, to admit to past mistakes and problems and emotional conflicts, but not speaking up seems worse because such silence could mean more caregivers will face the sort of problems I faced. And some people do listen, they ask questions, they try and understand, and that makes it worth it. Awareness grows in small steps…

I think that if more caregivers speak up, we may build the momentum needed to spread awareness. We cannot expect non-caregiver volunteers to fully explain what only we caregivers have experienced. We cannot expect others to understand if we have not opened our hearts and tried to make them understand.

One thing I have learned in these past years: there is no “they” who will set things right. We have to be the “they.” We have to say what it is like to be a caregiver.

September is over, the World Alzheimer’s Month is over. But the journey of caring continues day after day and our efforts to spread awareness must also continue.

Are you a caregiver? Have you ever felt people do not understand what it is like to be a caregiver? Maybe you’ve wished somehow that the situation would change, that non-caregivers would understand you better and know how to support you. Maybe you have wondered if you can do something to improve matters. Please use the comments below to write about what would enable caregivers like you to share your experiences, needs, and problems with non-caregivers. Maybe you can thinking of sharing that could be done in small, private circles of persons close to you. Or maybe you have some ideas on what would enable caregivers to share in public. Maybe you have faced some specific problems that stopped you from talking about your experiences. Please write about it below. You don’t need to give your name to add a comment; use your initials or use a pseudonym, whatever you feel comfortable. The comment form will ask for your email id, but the email id will not be visible to those who see your comment.

I’d love to read what you have to say.

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On work, identity, social interactions, and “moving on”: another personal update

Some days ago, I was asked a question by a well-meaning acquaintance, who was probably not looking for a detailed answer: So, have you resumed your work now? I didn’t really know what to say, but I think I mumbled something that satisfied the conversational need, and we moved on to other topics.

This is not the first instance (nor will it be the last) when people ask questions to gather data for what they consider the basics about the person they are meeting–anchors such as: where are you from or where do you live or what do you do… These questions are social conventions, found in most social interactions, and I often find people get very uncomfortable unless I stick to socially normal answers. Try telling someone that the concept of “where are you from” is possibly not so relevant nowadays, and neither is “where do you live”, and most people squirm or stare or seem to mentally tag you as a basket case.

But let me return to my discomfort with that simple social question: So, have you resumed your work now?. The context was clear. My mother died around eighteen months ago, and for several years before that, I had been reducing my professional work to clear time and energy for caregiving. This person, aware that I was no longer a caregiver, assumed I would have reverted to the “normal” state of existence of doing “work”, given my qualifications and all that baggage.

Here’s the thing: “Work” is used in conversations for work done outside the home in a setting that typically earns us money or can be called a job or business or career, whatever. Point one of discomfort: the question’s implication that years full of intense caregiving were not “work”. I did not get into a dialog about it, recognizing that this person was only using language conventionally and did not mean to offend, but the fact remains that such terminology negates all the work that goes on outside jobs/ careers/ business settings/ offices. We use the term homemakers but we don’t actually consider home-making work to be “real” work. We laud mothers for the effort it takes to transform nasty tykes into (hopefully) polite, productive and educated social assets, but we don’t consider that work. We say, oh, looking after an ill parent is tough, but we don’t consider that work. Those are just activities normal people do for their families. Grouping it with other things called “work” is considered uncultured, against family values, against “love.” Work, someone once told me, is what you do for outsiders.

Of course, some things change over time. Seventeen years ago, a credit card company rejected my application because I said I worked from home and showed the agent my laptop as my office; the agent didn’t even bother to subdue his snigger. He waved away my income tax returns which showed that I was earning enough and I would not be a risk to his bank. Things are somewhat different now, because working from home is more accepted as “work”, but even today, the definition of work is applied only to some types of work and professions. Sure, careers have also changed with time. People no longer frown at the word, “event managers” and accept it the same way (almost?) as engineers. And we accept that paid caregivers are doing “work”, because they are caregiving as part of a job. But the same work, or more, done by a family member is not work. I don’t really know how and when things will change, but I no longer bristle at such negation of what was my major role for years. I explain what caregiving involves to some people and don’t bother to do so for others.

From the query: So, have you resumed your work now? that was my first discomfort–should I point out that I am not quite emerging after an over-long vacation of sitting on a deck chair on a private beach, pina colada in hand, the latest bestseller on my lap. I am emerging from one of the most tense jobs I have ever done, a job recognized medically as one of the most stress-inducing jobs.

But over, now, to that other word, resume.

Years ago, when my mother’s dementia started affecting her more and more, I adjusted my work accordingly, both in quantity and in the profile of work. Some changes happened gradually and automatically, others were conscious decisions, like refusing software projects or assignments that couldn’t be handled over email. because I couldn’t go to meet clients. But it was not as if I flipped a switch and moved from working full-time on serious “work” (let’s call that Point A) to drop into the nothingness of non-work. It was more like I morphed from a relatively conventional work profile into another, not well-defined profile, with some components remaining similar, others changing a lot.

Suppose caregiving had not changed my life direction, where would I have been today, what would I be doing? I have no idea. Maybe I would have stayed at Point A. Maybe I would have moved ahead in the same career, become–I don’t know–better paid, more powerful, more influential, a sort of an A-PLUS. Or I may have slipped down, become more scattered and ineffective, deteriorating to an A-MINUS. Or maybe I’d have switched to something else, a different career path, reaching some Point B, either as a successful person or a failure or sort of middling between them. Many people change directions nowadays, when so many opportunities are available, and changing direction is generally more acceptable. We’re far away from the days when persons joining a job checked for retirement benefits because they expected to stay there all their working life.

What is “resuming your work”? Would “resuming” involve returning full-time to where I was before caregiving came into my life, or in that same career path but somewhat better or worse placed (say an A or A-PLUS or A-MINUS)? Or would it mean snapping magically to the alternate career path at some Point B where I may have been instead? In any case, why should my future be seen in terms of where I was years ago (before caregiving started impacting my choices and path)?

I’m fairly sure that the person who asked the question hadn’t spent so much thought on it–this is such a normal question. We need pegs to categorize persons, and “work” is one of them. Happens all the time in some form or the other. I don’t socialize much, but about a month ago, on a rare outing, I met someone who asked me what I “did.” I said well, this and that, it all depends, I’m rather laidback. She persisted till I finally attached a label to myself; I said I was a writer. She (naturally) asked, Which book have you written? I said I had written some books and some short stories, but she may not have heard of any of them. So then, what else do you do, she asked, her tone insistent. I told her I did some work for dementia caregivers and had set up online resources. But she seemed dissatisfied–perhaps what I had told her was so different from the norm that she was having problems accepting it and adjusting to it. Or perhaps I sounded evasive or my credentials seemed shaky.

A few years ago, such a conversation would have driven me back to a reclusive life or made me very defensive or angry, but this conversation felt so surreal it stirred no strong emotions. Seeing her intense need to make me describe work she could believe in or found worthwhile, I was somewhat bemused. Was it mere discomfort with the unusual? Or did she think I was a loser of sorts and was wondering whether I was even worth socializing with? Maybe her insistence was more about her identity and self-worth than mine. Or maybe she found me fascinating 🙂

But I also felt that this type of conversation could intimidate someone trying to redefine themselves after emerging from a bereavement, or from a role now rendered irrelevant, or from any other intense situation. It could be embarrassing and unpleasant for someone trying to find a new balance, a new direction, after surviving some very tough times.

After major changes happen in our lives and before we can decide on a new direction, we need room to play, time to not fit into any pegholes, time to experiment, make mistakes, change and change again. I don’t think identity-pegging social interactions allow slack for this. I guess many of us find some socially acceptable phrases to deflect the pressure and judgment we may perceive in such questions, however “normal” or well-meant the questions may be. I remember, just a week after my mother’s death, people expected me to know what I wanted to do with my life. To have a plan, a direction. I am sure that if I tell a casual acquaintance that I’m still not sure where I am headed, eighteen months later, I would appear wimpy or lazy or downright irresponsible.

So here’s the deal. Eighteen months have passed since my mother died, and I don’t have a clear, definitive answer to that “What are your plans?” question, not even a clear answer to “What do you do?” Funnily no one asks other questions which I think matter more, questions like “Who are your friends now?” or “How has caregiving changed you?” or “What sort of things interest you?” or, most important, “What areas are you experimenting with?”

I have changed a lot in the last 15 years or so. Yes, everyone changes over time, we change with every day we live, with every choice, every action–but I think my changes have been in a different direction from that of many of my peers, in terms of things I’m now passionate about or interested in, things I no longer find interesting, my perceptions about society changes or inertia, on priorities, and so on. These changes affect the way I interact with others and the interests I can share with them. Maybe some changes are temporary while other changes will stay–only time will tell–but meanwhile, I have to find directions and priorities based on my current self.

In terms of work I do and things I am involved in: I feel very involved and committed to the dementia and care cause. I am doing other things too, some related to the complicated task of simplifying life, some related to non-dementia professional work, some learning of new things, some playing around, but nothing substantial enough for me to use the label “work.” Mostly, I’m struggling to find a balance between all of these.

Regarding my dementia related work, I am trying to arrive at a sustainable pace so that I don’t attempt so much that I burn out and I don’t reduce involvement to a level that makes me feel frustrated and useless. One activity that takes time and energy is maintaining my online resources. I also try to stay informed about the dementia care domain through various sources, and to pour back what I learn as updates to my website. Caregivers continue to contact me, as do some volunteers, and to the extent I can, I share what I know. I had some ideas on additional projects, even prototyped some, but they did not seem sustainable and I dropped them.

As I work through my idea list related to the dementia cause, I’m especially wary about whether a new project I take up would lock up more time and energy in the future. My on-going work on my dementia site has shown me how time-consuming it is to keep online resources up-to-date, and I don’t want to start anything new that would soak up a lot of my time in the future, because I may want that time for other things.

I’m not yet very sure how to balance all the other (non-dementia) activities I want to experiment with, but I have started batching ideas and also cleaned up part of other personal responsibilities, in an attempt to simplify life and create spaces in my days.

Soon I expect I’ll be “normal” enough, that is, I’ll be as overwhelmed as normally-stressed persons who struggle to achieve the elusive work-life balance 🙂

BTW, I’m always amazed at how ambitious people sometimes get on my behalf, how confident they are of all that I should be doing either because it would be good for me or fun for me. And how much they think I can squeeze into my day. Stuff like: You must get back to work. You must write a novel. You must do more work on dementia. You must write a book on caregiving. You must write a memoir. You must travel and meet people. You must enjoy! Ah, if only I were that sort of productive juggler 🙂

One more thing: I still get yanked into memories of my mother at unexpected moments, sometimes very intense. I find it difficult to talk about some episodes of the past or to look at things she owned. But I am coming around to accepting that these surges, these gaps, are part of what is “normal” for me now, and I let the feeling flow till peace comes.

I do wish the day had more hours. I think I’m not alone in that wish.

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Personal update: A year after my mother’s death

My mother died one year ago; it’s time for me to post a consolidated personal update. Here goes…

I’ve written a lot about my mother in the past. I’ve shared memories of her as a person (including my childhood with her). And I have, over multiple posts, shared episodes of her dementia journey in this blog. I don’t really have much to add to that right now, and I’ll use this entry to share, instead, my experiences of this last year as I have tried to adjust after her passing away.

My mother’s death was a major shift for me not just emotionally but also because I no longer had to coordinate her care. A year ago, most of my life centered was centering around my mother’s care and also my efforts to help other caregivers. This was my main form of self-identity. Of course I was doing other things, too — I had other work and responsibilities, I read books (gobbled them may be a better way to express the truth), I took long walks, I did jigsaws, I saw an occasional movie DVD. But my self-identity was closely knitted around my mother’s care, and this part of my role/ identity collapsed overnight.

One immediate consequence of my mother’s death was disorientation. I’d become used to a constant state of alertness about her, expecting any crisis to happen at any time. I always carried my mobile, even for a five minute trip to a shop. That I no longer needed to remain alert was very odd. I would feel vaguely guilty that I no longer needed to keep her in my mind all the time. I even have intense anxiety episodes  sometimes–for example, waking up with a horrible feeling that something’s wrong or about to go wrong, and that it is related to my mother. Even after remembering that she is dead, and telling myself that, the anxiety takes a while to subside. I’m relieved to share that this disorientation and anxiety has kept reducing over time, both in intensity and frequency.

Then there have been these memories of my mother. While she was alive, I was anchored to her current reality and did not have the time, energy, or need to recall past memories related to her. Her death removed that anchor to the present. I found myself rudderless in terms of a context to think about her. Memories from childhood and my youth all rushed at me with equal weight and validity. I found this distressing and disorienting. Good and happy memories made me nostalgic and I felt a great sense of loss. Bad memories (my mother was not a perfect and neither was I, so we had our share of clashes) brought back restlessness and regret about issues/ grievances we never smoothened out. Both types of memories, good and bad, were disorienting and left me anxious.

In the past year, I have also met many persons who knew my mother, and their recollections of my mother has affected me. Some were her peers, and are active and fit; chatting with them made me acutely aware of how my mother could have been without her dementia, reinforcing my sense of loss.

I’ve been trying to work my way out of these experiences, and also been examining how to carve out my future.

I had not planned for my life after my mother’s death, because any such plans/ dreams could have distracted me from my role and caused me to resent my caregiving work and responsibility. I had a few vague ideas on things I’d like to try, but nothing clear, tangible, prioritized.  So yes, I now have some clear spaces in my life, but I have not experienced any paradigm shift. I’ve realized: Removal of some activities and responsibilities from the day does not automatically confer the mindset and energy to use the cleared up spaces. How does one do what one wants, if one is not clear of what one wants?

A major problem I am facing is lack of energy. All my life (except for a period when I was quite ill), I’ve had abundant energy. It was not always positive energy, sometimes it was excessively negative, but energy as such was never in short supply. This last one year I’ve been so low in energy that I sometimes fear I’ll never recover my drive and energy and that I’ve changed in an irreversible way. Even outings and vacations are tiring. I go for an outing and return without feeling refreshed, almost like I’ve been working hard at “Project Enjoyment” and I now need a vacation to recover 🙂

I’d like to add that every caregiver is different, the situation around the caregiving is different. Grief and loss and the process of healing, recovery and rehabilitation vary from person to person, but there are commonalities, too. I’ve been fortunate inasmuch as I’m in touch with other caregivers who are coping with bereavement and know that my experiences are not exceptional in either range or degree. Many caregivers, after months or years of their loss, continue to feel anxiety or disorientation and remain uncertain about what to do next. The impact is highest for persons whose lives were woven around caregiving and who saw the severe deterioration at very close quarters. Even within the same family, others who were not as involved or as close to the person who died have different recovery pace/ paths. I’ve known caregivers who were so numb at the death that it took them over a month to be able to cry. Books on bereavement and grieving (yes, I read some) also often say this process could take years.

The problem is, we see only the outside part of others, and so if we are feeling confused, disoriented, or anxious or irritable, we may feel we are the only persons with this dark, small, vulnerable inside. We think everyone else handles loss much better, and that we are being inadequate and negative and are disappointing people around us.

From what I see around me, it seems that society expects people to be reasonably active and positive within a few weeks, or maybe a month or so of the death. After that socially accepted grace period, people start saying things like, “when will you move on,” and “she’s at peace, why can’t you move on,” and “come on, be positive, you are free now,” and “snap out of it now, for heaven’s sake” and “when will you get normal” and things like that. Perhaps these statements reflect a general discomfort that people have while interacting with a person who is feeling “low.” Because they don’t know what to say or do, they are tempted to dismiss feelings and they say things that would stop persons from expressing their grief. Or they avoid the person till enough time has passed and they need not mention the bereavement.

Any trauma needs time to recover from. I suspect that anyone (not just caregivers) who has undergone something traumatic/ been bereaved gets sympathy only for a limited time window. People around them “cut them slack” for just a few days or weeks. I suspect that this socially normal duration is far shorter than what the person may need. And the grace period assumed is probably even shorter if the person who died was very ill and fully dependent, persons about whom neighbors, relatives and friends feel justified in saying that the person “is better off dead” and “death must be such a relief.”

Anyway, in terms of future directions…

For the past three months, I have been organizing and consolidating the resources I have created for dementia caregivers. Based on past emails from caregivers and my notes on phone interactions, I have modified and enhanced my existing resources. For example, sometimes persons sent in queries for which answers are already available on my site, so I added more questions in my FAQ and modified pages to make related links obvious, or added some more information. I have checked my to-do lists and wish-lists, completed most items and added the remaining to a new wish-list. I’ve also put in behind-the-scenes technical work to streamline my maintenance effort later. It’s been slow and tiring work.Sometimes I feel that this cleaning up and consolidation effort is the right way to organize myself and free mental resources; at other times, I fear that I am using this consolidation as a rational, legitimate-sounding way of procrastinating 🙂

As of now, I expect that I will continue to provide support to dementia caregivers in India through creation and maintenance of online resources, but I’m still in a flux about what else I want to do and how I’ll combine all the things I want to try out.

I’ve always been a curious person, and I enjoy learning new things. But time is always a constraint, and my current low energy poses a problem. On some days I feel excited about what I want to try, then I feel overwhelmed about how can I ever fit it all into a day or even decide what to start with, and finally I reach the other end of the pendulum swing where I tell myself that I don’t need to do any of this, why bother! On the plus side, I have tried some new things, found that I may like some, and that I don’t like others. Vacations and sightseeing, for example, don’t interest me much; I have found I don’t enjoy the malls in other cities any more than malls in my city, and I’m not into history or religion or eating different cuisines from local hotspots. But I love walks of all sorts. I have plans to try some types of craft.

Overall, I’m not unhappy with my recovery pace, but it has been more difficult and long-drawn than I’d hoped it would be. I continue to be gentle with myself, though, and hope things will keep evolving. And my future activities are still nebulous, but not as nebulous as they were earlier.

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Stepping back, stepping forward into a new year

A new year begins. Here’s to hoping that all of you who believe that such beginnings matter are finding yourself poised well for the future, happy with whatever you’ve decided to do or not do, or happy that you shall not decide and let yourself go on with the flow. And hoping, too, that what is available to you–time, energy, capabilities, moods, support systems, whatever–is aligned to your choices and directions.

In one sense, an year is just another collection of days, with the first day of the year being notional and conventional. But this convention, a beginning marked by a number, also gives us an opportunity to pause and think before we venture forth. It provides us an occasion to consider options and make choices and decisions which we may or may not implement in the year that follows.

To me, new year resolutions have never been a big deal, because I make resolutions and changes even without the year-beginning marker. But this year I am choosing to be especially soft and gentle with myself, the way I often suggest to other caregivers and ex-caregivers 🙂 I am staying free of new commitments because I would like to play with the possibility that I can be curious and explore–and resolutions (even a resolution that determines that I must be curious and explore) can be binding.

For the last few years, I’ve been starting the year with a 31-day blogfest (one blog a day all through January), but this year, I am skipping that blogfest to release spaces within me–spaces of time, energy, mindset, emotions. I shall be continuing with activities I am committed to, both on the personal front and in areas related to dementia care. But hey, I may use the rest of my time to indulge myself in luxurious activities or just do nothing or I may use it to ponder or explore…

I think this could be an interesting year ahead. I hope that is true for you, too.

Till the next post, then.

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Seven months after mother’s death: updates and musings

It is seven months since my mother died, and I sometimes get queries on how I am doing, so I’m sharing an update.

My mother’s death meant I lost the person my life had been revolving around for the last several years. My sense of identity changed. My role, responsibility and activities needed a rethink. Given the sweeping change caused by her death, I think I’m handling my situation well enough.

I am living a reasonably active and productive life. While I have not firmly decided the way I will divide my time and energy across current and new activities, I am clearer now than I was some months ago. Redefining my life activities and directions will take more time, but that’s okay; I prefer to proceed cautiously and experiment with small changes, see what works, what doesn’t, and tweak things rather than do something dramatic and then have regrets.

I continue to face challenges on the emotional front, where my readjustment is slower. I continue to ponder over my new identity, my desires and my possible prioritizations. And, I also try to understand what “moving on” means. I tell myself that while a situation may change abruptly, the related habits and personal characteristics take time to change, and that well-set patterns have an implicit inertia.

My years of caregiving changed me in many ways. I am different in what I like to do, what I find important, what I am curious about or concerned about, what I feel about issues and incidents, what I want to buy or see, and so on. Some of my earlier friends now have life direction, interests, and priorities that are very different from mine, and there may not be enough commonalities to resume friendship. Our paths have diverged, and I am not much in touch with them. I am trying to make new friends, but my somewhat introvert nature makes that tough.

Seeing my mother’s decline and staying emotionally close and connected through the process, is helpful in the process of closure, but even now, not a day passes when I don’t think of her or miss her in a gentle way. And there is a sense of loss I experience when I see how she spent her last several years alongside how her peer group is faring.

In the past few months after her death, I have met my mother’s friends and peers, many of them after several years. They ask me about her last few years, or start telling me stories from their shared past. And they bring back memories of a mother who was younger and more active. As I talk to these friends of my mother, I notice how, though they are my mother’s contemporaries, they are physically active and cognitively sharp. I become acutely aware of what my mother could have been like without her dementia, and how different our interactions would have been. It hurts.

It will take time to find my new equilibrium of friends and interests and to find my peace with the overall loss. I also know this will need effort on my part, and this is what people call “moving on.”

But what is “moving on?”

I sometimes have people advising me that I should not think of the past and “move on” and forget what happened because now I am “free.”

I find that approach strange and unacceptable. It assumes that my life was a black hole when I was a caregiver, and that is not true. My years as a caregiver are an integral part of my life. They had their ups and downs, like any other phase of life has. The years involved work, responsibility, and tension. They also gave me the fulfillment of staying emotionally connected to my mother, they taught me many things about life, identity, joy. They changed my perspective about what matters and what does not, what dignity is, what connection is, and so on.

As far as I understand, “moving on” is something that happens all the time, for everyone. I think any “moving on” can be robust and wholesome only if it involves resolution and peace and consolidation of lessons learned. It cannot be achieved by amnesia or denial or pushing the past under the carpet.

Anyway, I have started consolidating my dementia care thoughts and my experience sharing, hoping that sharing and structuring will help me neaten my mind and perhaps help others. As part of this, here’s one e-interview (A Caregiver’s Role) and below is a video where I share my late stage dementia care experience. (You can also view it directly on youtube here.)

Main links referred to in this post

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Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)

Last week, a neighbor who had been reading my Dementia Hindi website said, “I did not know this could also be due to vascular problems” (“mujhe nahin pataa tha ki yeh naadi sambandhee bhi ho sakta hai”). Her husband has hypertension, and they are not always careful about it; she was obviously shocked at the thought that neglected blood pressure problems could be connected in any way to the sort of symptoms she had seen in my mother. Dementia, hitherto a name this neighbor could barely pronounce, had become a relevant topic now.

I’d been tense watching this neighbor read the web page (the sort of tension a parent feels when a child is onstage). She had nodded at times, frowned at times, even muttered to herself. Her detailed questions after she finished reading the page showed that she was genuinely curious and concerned. In the course of my answers I happened to mention that sometimes head injuries can cause dementia, and again I saw the info-byte hit her hard; I suspect she’ll be more particular about family members wearing helmets, too.

Her concern set me thinking.

A lot of people think dementia is something that happens to others (not to them). They do not know how close it can hit. More important, they do not know that some health or safety aspects they are currently neglecting could increase their chances of dementia.

An additional problem is the confusion between the two words, “dementia” and “Alzheimer’s”. Much of dementia awareness is woven with the word “Alzheimer’s Disease”, and many dementia support organizations work under the umbrella name of Alzheimer’s. To laypersons, these terms seem interchangeable. And because “Alzheimer’s” seems an alien name, imported and “foreign”, many people are dismissive of it, and are also dismissive of dementia.

Such erroneous interchangeability causes weird misrepresentations. For example, one newspaper may claim that India has 3.7 million dementia cases but another newspaper, based on the same expert interview, may say India had 3.7 million Alzheimer’s cases. Given that Alzheimer’s is only one of the diseases that cause dementia, common sense shows that both statements cannot be true. Yet once published, the article stands as such, uncorrected, perpetually misleading.

I’ve always been concerned about this confusion between dementia and Alzheimer’s and this submersion of dementia under the word Alzheimer’s. I have many reasons for this concern. Read the full post here

Impermanence, Death, Closures and Continuity through Body Donation

In brief, my mother died at home two days ago, on Sunday evening from aspiration pneumonia. In accordance to her wishes, I donated all the parts of her body that I could. Her eyes went to the eye bank; her brain went to the brain bank for research; the rest of her body went to a medical teaching hospital for students studying anatomy. Again, as per her wishes, her body was at no point put up for viewing, and no other rites were held.

These various body donations put a dignified, respectful and heart-warming end to a life that had been racked with challenges and deterioration for many years now. My mother looked peaceful, and it was the sort of end she always wanted, and I was glad I could respect her wishes.

Sharing below some of what happened.

The day started much as normal. My mother had been stable but deteriorating. The March beginning blood tests were normal. She had problems swallowing and would sometimes make gurgling sounds; they sometimes subsided in a short while, but sometimes needed medicines, including antibiotics. My mother was spending most of the day sleeping and not showing any interest in people around her most of the time.

It was around mid-morning on Sunday that she started the gurgling again. It seemed worse than the minor kind that subsided on its own, so we made her lie on her side, and called the doctor. Her expression showed no discomfort in spite of the gurgling sound, but her breathing was shallow and rapid. After a while, her body seemed warmer than normal.

Hubby and I surfed for gurgling while waiting for the doctor. We downloaded pages and PDF files with scattered, even contradictory information. Some people said gurgling came and went, some gave the gurglers just a few hours or days to live after it started, some gave them a few months, some said there was no correlation. Some explained that gurgling sounded bad to the family and worried them, but was not actually a hurtful experience for the patient. One document cautioned medical practitioners not to use the alternate term for gurgling (death rattle) in the presence of family members.

The doctor came, checked her, made me hear the gurgling through the stethoscope placed on her chest, prescribed antibiotics to be given via IV. He initiated the process of a nurse coming over with the IV stuff, while hubby went to buy the medicines. After a while, my mother’s gurgling reduced, and she seemed very tired. I tried to talk to her, but felt she wanted to rest. We cleaned her, and let her rest. Things seemed better with her. Meanwhile, we were following up for the nurse with the IV, and as soon as we realized the nurse would be arriving shortly, hubby went to my mother’s room to tell her that.

She was not breathing.

Read the full post here

Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

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Misc: stray ideas on ideas

After tossing around multiple serious ideas for my next blog entry, starting one, then switching to another, and so on, all on stuff that needs thinking and research and such like, I’ve now chickened out and decided to write a tiny entry about my ideas on ideas 🙂 Nothing dementia care about this, just life and what happens (or does not)…

See, one thing that fascinates me is how dime-a-dozen my ideas are, even (apparently) good ideas. And how little then gets done on most of these once-so-sparkly ideas 😦

In December, I happened to read this book called “Making Ideas Happen” by Scott Belsky, and it had this rather cute little concept (okay, not really little) that sort of said that the worst enemy of a good idea is another good idea. I don’t remember the exact words, but I do remember my aha! feeling at reading that, because that sort of thing happens to me and around me all the time.

Take my attempt at blogging yesterday. I opened my blog-ideas folder, saw lots of them. I flipped through them, started typing. Barely a couple of sentences down I stopped; the idea required effort to get converted into a blog entry, some pondering, some research, some gathering information and opinions from others. Okay, that was hard work. The shine of the idea dulled because of the work it entailed. So I picked up another idea that seemed simpler. A few sentences down, I paused. You can guess what happened. And it happened a few more times before I decided to stop.

I have plenty of thoughts about plenty of things. Mine is the typical monkey mind 🙂 There are many things I want to try out, to do, to share. And definitely I cannot do all of them; I have to prioritize…Ideas come in all shapes and sizes, they come as a windfall, they come all the time. Some are big ideas, will take a lot of work, but are also a gamble. Some are small but easy to do. Most are in-between in their just-popped-in-the-head state, and could go either way if pursued.

I also have lots of ideas on prioritization criteria (but I am unable to select from them, too).

Which reminds me, I have also read that it is easier to actually do things if one does not have too many choices. Too many ideas, I suspect, are more of a problem than too few ideas…

Back to Belsky, and his concept; I think he’s got a point.

I keep reading/ hearing announcements of ideas that people have started work on. Ribbons are cut, speeches made, projects launched. Then comes the next big idea, and the previous one seems less shiny. Work on the first idea is slowed down, resources withdrawn, diverted to the next, bigger, shinier idea (till an even shinier idea comes along).

So yeah, at least one of the things that stops a good idea from happening is the coming along of another good, or maybe even a great idea.

Last year, around August end, I started getting an idea that seemed big (and frightening). I skirted around it, played with it, shelved it, and so on, and then finally in January this year, in the middle of my blogfest, I started work on it. Now the idea is at its most boring phase, the phase where it is lots of work and a gamble, and every day, as more totally different, fresh and sparkly ideas pop up in my monkey mind, I am tempted to say, okay, let me deviate for a few days.

Aww, let me confess, I did get diverted at least thrice in these last three weeks for non-trivial and good “other” ideas. Then I pulled myself back to that stodgy idea I had told myself I’d pursue.

Because, the way I look at it is, there is no point in my getting ideas if all they do is play mental musical chairs to an unknown musician. I confess I have never found an idea that remains shiny even as it starts solidifying…

Anyway, so when it came to writing a blog entry, I was tempted to start a couple of small blog-entry projects like the one I had done in December. Nice, new sparkly stuff. I have two topics on which I am raring to go, to gather data, to mull and think and structure.

Later, perhaps.

That’s probably one of my shortest blog entries, which should be a relief to those readers who ended January as weary reading my blog entries as I was writing them.

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Day 31: the year’s target met, the blogfest completed

Oh boy, what a relief! Making 31 entries in 31 days is an endurance test, and as it is the only target I set in the year, I am so glad it’s over. It’s not that I will be couch-potatoing the rest of the year, but the January blogfest is the only activity where I aim at time boundaries as such; the rest of the year I just keep going at whatever pace I can manage, for whatever work I want to do.

When this year, on January 1, I kicked off this year’s blogfest, I had been very shaky about it, but all in all, though there were days I found the writing tough, I am glad I took on this job.

Because, you see, like in previous years, it has helped me notice things. The sheer intensity of a daily blog means one has to think harder, search more inside.

Here are some things I found:

  • My concern about caregiver role recognition and support remains a major one for me, and that I am also very concerned about caregivers being able to pool their knowledge and tips and be a continuing community even though individual caregivers may move on and away when their loved one passes away.
  • I have thoughts and ideas and wishlists that I want to share with concerned persons, and while I have been communicating these whenever I met someone who seemed interested, and while I have also been blogging about it, I have not been clear and systematic about it. I have created some resources that could be useful to others, but I need to find ways to make them easily available to anyone who may benefit: I am adding this to my to-do list.
  • I confirmed to myself that I remain a brick-placer, and am not a cathedral builder (I even blogged about this). I am a document creator and a resource person and not a change agent and so what? I can, in spite of my limitations, continue to contribute so long as my energy and commitment remain. My blog entry yesterday consolidated my role, scope, and limitations as a dementia care resource person and hopefully my putting it down will make it simpler for people to know my scope of involvement. At least, I am clearer about myself now 🙂
  • I discovered that I am getting increasingly concerned about ageing and eldercare in general, especially on how well the problems are understood and how well support is available to those who are not on the gung-ho positive side of the ageing curve. I see this as important because dementia care that fits in this context, but I am also concerned because I and many people I know will need such support in some years. I feel not enough is happening in this area in tangible ways, and not enough resources are available. (This is not yet an area I plan to do anything in, except share random thoughts).
  • And finally, I reconfirmed that blogging continues to help me sort my ideas, meet people, share concerns and ideas, and even act as a journal for work-in-progress.

So I’ll be blogging more this year, of course, possibly managing a weekly blog norm, but that’s more like sticking to a habit than hammering myself for a target.

For today, I declare the January 2012 blogfest closed and I’m off for some celebratory chocolate.

Posts referred to above are here: My involvement in dementia care support: an explanation and (Build cathedrals or place bricks, everything helps…just do something

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