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.)

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Reducing caregiver isolation, working from home, using coworking

Recently, I shared my own experience of isolation and loss of social skills as I became more and more occupied with caregiving, and then I suggested that caregivers be alert about this possibility and guard against it. A few days later, I happened to talk to a caregiver and she described what she planned to remain connected to people even when she worked from home. I asked her whether I can share her idea, and she not only agreed, she even said that such sharing helps people and she also may pick up ideas if others share their ideas (hint, hint, to any of you who has ideas) 🙂

Anyway, so this caregiver looks after a dependent parent who has dementia and is immobile, but can be safely left alone for a few hours. The caregiver works from home, executing freelance assignments that she does on her computer and emails. She was once very active socially and her enforced seclusion dampens her spirit, so here is what she is considering:

This caregiver has an “office room” to work from. Now she will add some tables and chairs to this room to make it suitable for multiple users. She will then invite friends who work from home to use her office room as their offices. Each person will work on her own assignments while sharing the same office space and in the companionable presence of others, so that they all feel like working more and don’t succumb to distractions or feel lonely. The caregiver plans to put out flasks of tea or coffee (for which she may ask her friends to pool money, or maybe not, she hasn’t decided).

Read the full post here

An instance of caregiver isolation

I thought I’d share an example to illustrate a situation where caregivers are unable to speak up honestly about their problems and get support.

We often hear of how we must love the patient, and if the patient is a parent, how we must love the parent as the parent loved us, and how we must do things for the parent as the parent did things for us. Yet there are assumptions here that no one questions, and situations where care is challenging because of problems caregivers cannot talk about.

But first, about families.

I know families where parents were abusive towards spouse and children. They drank, they beat the wife and kids, they would not let the children study. Broken homes, broken bones, broken hearts of small children. The children somehow managed to make their way through their lives in spite of the negativity in the home, in spite of the beating and drunken torture, the neglect, whatever.

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Celebrations, isolation, withdrawal, and inabilities that creep up over years

For the last few weeks, I have been working on something that needed figuring out a lot of technical stuff, and today morning, finally, I managed to finish off that chunk of work. And as I sat back to breathe in deeply and try and feel happy about it, I thought of one major change that has happened over these last few years: I have fewer ways to celebrate now.

I started working from home around twenty years ago, after my father fell ill a number of times and coordinating his care was tricky with full-time work outside home. My mother (she was okay then) could not handle that work along with looking after my five-year-old son, and so hubby and I re-arranged our professional lives to a freelancer mode with the base at home. Hubby’s work continued to include travel within and outside city, but I worked off a home-base.

Till that point I was used to working from a typical office. My initial assignments as a freelancer were mainly system studies and design, which required visiting client sites often, but I had the flexibility to arrange the dates and times and was therefore available to support my father when needed. But then the profile of assignments moved to writing reports or developing systems, and I was spending most part of most days at home. The Internet was in its infancy, and many people did not have emails or did not check them. Work-from-home was rare and considered an oddity, but I managed. I also had to go out often for meetings and presentations–and used long phone calls with clients and fellow-professionals for supplementing these and get work done, but my amount of communication and social/ professional contact kept reducing.

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A difficult story to write: A caregiver’s tale

This post is about two women I read about in the newspapers, Sangeetha and Baby. The first time I read about them was in December 2010, while scanning newspapers for caregiver stories. I read about them again the same way, in February 2011. For the last few weeks, I’ve been trying to make myself write this post about them. My way of honoring them. Because writing is my way of doing things.

Here is what I read in December, the first installment of the story.

The story starts in a simple way: Baby, a poor, widowed woman wanted her daughter Sangeetha to get educated, and slogging for years as a laborer to earn money, often ignoring her pains and other health problems.  Daughter Sangeetha studied hard, completed a bachelor’s degree, and then did her post-graduate diploma in computer applications.

Let us pause for a moment to imagine this: Baby, lifting heavy loads of stone, working long hours, and her daughter, struggling to study. I think it would be reasonable to assume that Sangeetha would be a first learner in the family, and every achievement of hers becomes more significant given her circumstances. She must have shown courage and intelligence. Presumably she did not fritter away her energies in the sort of fun and games that most of her peers would be doing; her mother worked hard, and so did she. They shared a dream, that of Sangeetha being educated.

To go on with the facts of the story, as reported: Baby’s severe pains reached a state when they could not be neglected. MRIs were done. Investigations conducted. Baby had developed Parkinson’s. Her mix of problems soon included dementia. Sangeetha, her education complete, had been trying to earn money on the side while attending coaching classes so that she could get a government job. But with Baby now having fits and falling, Sangeetha had to shift her role and become a fulltime caregiver.

I remember thinking, as I read this, that O’Henry would be proud of how life imitates fiction; this was a real-life Gift of the Magi story. Instead of working to get the job and complete her mother’s dream, Sangeetha gave up the possibility of a job because she could not leave her mother alone for even ten minutes. As the round-the-clock caregiver, Sangeetha lived in a small thatched hut and cleaned and fed her mother and watched her worsen. There was no money, no food, no medicine, except the small amounts that came thanks to the charity of some people and organizations. There was no time to go out and earn anything. There was no energy.  There were only bucketfuls of soiled clothes and caregiving work that never ended, and Sangeetha did it without grumbling. Day after day, month after month, year after year.

“A gem,” is how a neighbour described Sangeetha.

Read the full post here

Paring down to essentials

The process of adjusting life to cope with my mother’s situation began when her confusion and memory loss started becoming visible in longer interactions, well over a decade ago. She had not been diagnosed at this time (though we had been visiting neurologists) and we made these adjustments in response to her strange behavior and our failure to reach her through reason and negotiation.

My main focus of adjustment at this point was to create an environment that minimized her rage or frustration cycles. This was, I confess,  not as part of some well-thought out, compassionate and caring strategy, but a form of self-preservation. There was an air of helplessness and frustration. We had no idea she was suffering from a medical condition. Her “unreasonable” and “dictatorial” methods seemed parental meanness, of the sort movies depict, and I was trying to stay safe and sane.

For example, if she wanted her food served hot and got agitated otherwise, I tried my best to be around to make it and serve it hot.
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Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
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to talk or not to talk and whether one has a choice

On to the social interaction business, and my apparent ambivalence.

The life and choices I have are quite different from people who have been ‘peers’ of mine, and as I accept my new realities, I find myself grappling with trying to decide whom to interact with, how much, and for what aspects.

There is an entire range of topics I want to share with others but cannot share because the communication gap is too severe. I do not want to put off people and lose the bit of sharing I do have, so I have to choose carefully.
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a solo dance is not good enough

Sometimes, some health news alarms me, like this one which suggests we party to keep away dementia.

Because, I cannot party. Not because I don’t want to, but because partying means you have a social circle that accepts you into its fun-making, and a support system that allows a measure of spontaneity, and a personal nature that can set aside all bothersome thoughts and responsibilities to wear dancing shoes and a beaming smile.

A calm and outgoing personality” needs a possibility of venues to implement that outgoingness 🙂 Social contact may be a way to stave off dementia, but it cannot be my way. Most of my interactions with fellow humans is by reading what they write (I gobble books) or through online groups, or through a sense of sharing (however limited) that blogging gives me. I enjoy a sprinkling of phone conversations with friends who stay in touch even though we never can meet. That, according to another article I read, does not count as being socially active. You have to go out and meet them, period.
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caregivers and their new planet

My focus in this post is the social isolation caregivers experience, a theme I have explored in previous posts, and a common problem caregivers face.

All of us shed old friends and acquaintances as time passes. School friends are forgotten, people who shared the same hobbies fall away as their hobbies or ours change. We leave a job, and our contact with old colleagues withers away. We move to another city. Children and siblings move away and marry. Many of these just happen, as a type of growing apart, when things that bind us are not relevant any more. Most of the time, we may not even notice them.

Some partings, though, do bring sorrow–those not initiated by us, or those with a lot of bitterness/ acrimony. Breakups. Divorces. Deaths. Fights. Misunderstandings. Each of these takes a toll, diminishing us in some way.

But then, there are new connections, too. A new lover, a new set of colleagues, a new community joined. A child born, a marriage that connects you to a new family. Some of these changes enrich us, some are unpleasant (a horrible boss, a tyrannical in-law).
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caregiver isolation

Yesterday, I shared a story of Friend A, alone, sad, feeling let down. The tragedy is, such isolation is not, well, isolated.

Again and again, if they open their hearts to you, caregivers will tell you how their caregiving becomes even more burdensome because people they knew earlier, friends, relatives, start cutting away. Often, this happens gradually, and often it happens without grace. That is, if asked, people give reasons that sort of blame the caregiver for it.

I know this from my own experience, and I know it from the experience of many other caregivers.  These are the sort of sentences we hear:
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beyond acceptance in caregiving–the journey through unknown territories

When I was twelve, a palm-reader told me most authoritatively that I would travel extensively through unknown lands after I crossed the age of forty. I believed him, especially when an expert astrologer said much the same thing based on my janampatri (birth-chart). Then, at forty, when I should have been planning my world tours, I got drawn into caregiving, and I said, well, so much so for all those predictions 🙂

Looking back, though, caregiving has been a journey through unknown lands, albeit of the internal kind and not quite the sort I expected. Like any adventure, it has involved unexpected situations and needed creativity and improvisations, and below I am sharing some of the landscapes I have viewed…

The landscape of parents, seen as a fellow-adult -Too many of my friends and colleagues stay ambivalent in their attitude towards their parents. Some dislike them, even hate them, and never get the time (or energy or will) to resolve this in time–it rankles inside them for years, and sometimes becomes a core that is so heavily shielded they don’t venture anywhere near it.  They react to their parents as if they were still children being imposed on, and move away physically/ emotionally as soon as possible, staying distant. The discomfort is palpable.
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