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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Build cathedrals or place bricks, everything helps…just do something

There’s this story about two masons and how one was a grouchy sad specimen who saw his job as placing bricks (so mechanical and mundane), whereas the cheerful and energetic one thought he was the one building a cathedral (he probably whistled happily all day).  Perhaps the moral being hammered in through this “story” is that people who think small or see themselves as small workers are unhappy and unproductive.

I’ve heard this story quoted often, especially when talking of strategies and visions and of being change agents (heck, I have quoted it myself sometimes). But I’ve been pondering, and I think people responding to this story perhaps mix up two different aspects: (1) whether it is good to have grand visions, and (2) whether people can work cheerfully and productively at the low, detailed level without pumping themselves up with grand visions.

Now I’m someone who stays at the brick-laying level, so maybe this post is a biased self-justification.  Huge cathedrals give me vertigo, and thinking of playing major roles in building them totally intimidates me. And though I stay at the brick level, I don’t consider myself as grouchy and unproductive just because I keep my eye on the next brick rather than visualize myself as a critical cog busy creating an impressive cathedral.

Just a couple of months ago, I was on the phone chatting with someone who has a vision of setting up a huge project for helping a large number of people of various profiles.  She was just kicking off her research part, building up lists of contacts and stuff like that, and she and her colleague expect to take two years on the ground work.  She described to me her overall vision–and yes, it was very impressive–and I asked her, “What do you see your role as?” and she said, “I see myself as a change agent.”

I had to admit to her that I saw myself more as a document creator.  It sounds small in comparison.

But again, as I think about it, I feel we don’t have to compare…

See, visions are good. They are great. Grand ideas, large canvases are needed, and here’s to wishing all power to those who have them and work towards them and manage to make major changes in the world.

Guys and gals who dream big and think big and act big, we need you.

But that does not mean that people who lack huge visions are somehow wrong or defeatist or ineffective.

For one, I’m not sure that lofty visions help everyone work. Some people may relish large canvases; they may thrive on the challenge and vastness of it, and get fired by it to do their best. But others, after some initial euphoria, may balk at the actual work because it seems to need too many bricks and thus make their individual contribution seem petty in comparison. So they may end up placing no bricks at all…

It is also interesting to note that many projects now as large as cathedrals started with a person making some small thing, and another, and gathering them and improving them and then realizing it could be slapped together into something vaster.  Sal Khan of khancademy.org started his work, not to create a colossus of educational material, but to help a cousin with some small math problems. Look at what he achieved.

And does it really matter if the small pieces a person makes don’t really get formed into a cathedral? So long as each brick laid helps someone do something, it is a brick worth laying, at least for the bricklayer and for the person who benefitted.

The world needs all sorts, and so let us also value those who think and act small. Let us not assume they are petty-minded, frustrated, weak, ineffective. Let us not mentally dismiss them as small thinkers, or as cowards shirking their jobs  and unwilling to convert their potential.

Let us not get so swept by visions of cathedral builders that we end up discouraging people who work at a different level, a different scope.  Small is beautiful, too.

These persons, also, are doing something…

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