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

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

  1. Rummuser says:

    One person’s normal is another person’s illness. If you can afford to live the way you currently do and spontaneously at that, without giving grief to anyone else, I would not spend much time pondering over these mundane questions and answers. I too am often asked such questions and I normally am flippant in my replies. Do read this post and the others to which I have given links. http://rummuser.com/?p=10446

    • Interesting 🙂 Maybe I should jot down those answers and reel them off from a chit in my wallet when someone asks me the question. That should be nicely disorienting for persons asking questions… Oh, and I think flippancy works better when you have a wise look and a beard and bald, sort of sage like, so that you end up sounding profoundly flippant 🙂 I can’t do much about the wise look for myself (a perpetual frozen-on-the-face frown doesn’t quite look wise), but the way my hair is falling, I should achieve baldness soon, As for growing a beard, I’m working on that…

  2. Gowri Manian says:

    Your blog regarding dementia care itself might swallow all other ‘work’ you are supposed to be doing, in terms of credit, with it’s ‘India specific’ content and resources.Those people are good intentioned, though expressing it not in the right way.We ourselves are the best in choosing what we should do and when to do also.That aside, why bother, and as you said just have to ‘move on’! Take it easy and ‘live ‘ your life….:-)!

  3. VK says:

    Oh.. so beautifully written..

    I have my Mom-in-law at home with dementia..quite ill now and totally bedridden for the past four months..I do have help in care giving and I also “work” 🙂 So I can fully relate to what you have written.

    Thanks for making us feel better 🙂

  4. Pingback: A personal update: two years after my mother’s death | Swapna writes...

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