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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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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