Reshaping career and identity

Things did not improve after the initial adjustments and it slowly dawned upon all of us that the responsibility of looking after my mother was not going to be that simple, solved with shrinking-out-of-her-view and take-an-episode-at-a-time. This was an ongoing project.

My husband’s work involving a lot of travel. My son was in his critical years of schooling (close to the board exams state). It therefore seemed natural to me that I should assume more of the work required to cope with my mother’s situation. Besides, I knew her better than hubby and son. I was her closest relative, and had lived most of my life with her or near her, and was best tuned to understand her.

I was working from home anyway…

I had been working from home for a number of years by the time my mother’s confusion and memory loss and balance problems became obvious. That is, I operated my consulting work using home as a base. My work involved visits to client sites to study systems or provide consulting or training, and then I’d use my home-office to write out reports or code/ test systems or create training material or process manuals or whatever I’d contracted to do. While I was “working from home”, I did need to go out often to meet clients or work at their premises.

As my base for work was my home, I’d get business calls at home, and often I’d get important courier packets or I’d have to send out packets (for which the courier persons would do a home-pickup). My husband traveled a lot, so we also had travel agents dropping in to deliver tickets and passport-with-visa-stamps and such stuff.

This work-from-home had worked smoothly for many years. It gave me flexibility in terms of time.

For example, as my mother’s balance problems had grown, she had needed someone to take her out for morning and evening walks (someone to hold her hand to steady her if she overbalanced), and this needed me to be available. My father’s illness also required that someone be accessible nearby. And being at home also made it simpler to be around for my school-going son, just in case…

(This was well before before mobile phones became ubiquitious–yes, there was such a time….And e-tickets were not common, either, nor was it usual for people to work from home or hold meetings using Google chat or other such online tools)

When my mother’s behavior started changing, I cut down on “non-essential” social contacts and outings as I wrote yesterday (Paring down to essentials). But I continued professional work by tweaking around my modality of work to accommodate my mother’s strangeness.

One problem was meetings. In those days, no one would consider a phone-conference meeting. I was expected to travel to meet the client, and so I tried to reschedule meetings so that my son would be at home when I was out. That was not always easy or possible, and I had a problem explaining why I was being so finicky about every meeting’s timing. I tried to say my mother was unwell, but I could not keep saying that. I did try telling someone that my mother gets very worried if she is home alone, but he didn’t believe me.

An early consequence of my mother’s problems was that I started saying no to assignments that involved too many meetings. System studies were out, as was system development, because these required repeated visits to client sites.

I have already written about some of the problems that occurred when I went out. There was my mother’s forgetting to eat, or not understanding that the meal was prepared and kept for her (read here). There was her dashing out if she faced a problem and I wasn’t there to handle it immediately (read here). There were phone calls that she’d pick up, take a message, and then forget about (read here).

With home being the base for my work and hubby’s work, there was some amount of coming and going of people who came to deliver documents or pick them up. Or tickets and passports and visas. Travel insurance. And this became a problem.

My mother’s room opened directly in the corridor. There was a wooden door that she opened early morning and would close only at night (she’d sometimes forget to close it) and a jaali door that was kept closed. But anyone walking past could see through the door’s netting easily, and would find my mother sitting on her chair close by. Most delivery men from the offices of clients or travel agents would see her and not bother to ring the bell. They’d call out to her or wave to her, and she would struggle to get up and open the door (she had balance problems) and then they’d come in and deliver whatever they had to deliver while making small chit-chat, maybe drink some water. They recognized her, and assumed delivering to her was the right way to do things.

This led to several problems.

When a delivery boy came, my mother would be gracious–smile and be polite and all that–but as soon as the person left, she’d slump from the fatigue of the effort she’d put to remain socially gracious. Often the delivery man would end up asking a few questions or passing a few comments, simple ones, like “You are looking more tired today. Is something the matter?” or would mention something from the day’s newspapers– casual comments, very normal. To my mother, these were strenous. If she couldn’t answer a quetsion, she’d feel stupid.

Another issue was that my mother would be tense about the document she’d received. She would keep it “carefully” and as most of us know, documents kept “carefully” get rather difficult to find. She would also forget about them. There were occasions when I thought a ticket had not been delivered and began chasing up the travel agent, only to find later that my mother had received it and forgotten about it.

I then began searching her room before assuming on-delivery; asking her whether she had received a ticket would only result in another storm. She felt spied upon.

Some delivery persons also wanted her to sign that she’d got the documents. My mother had always been suspicious of someone wanting her signature. Also, she was not able to write well enough and sometimes forgot her signature.

All this made my mother feel inadequate and ashamed, and she reacted to that by exploding on me for imposing this work of receiving deliveries on her. I told her that she didn’t have to open the door; she could tell them to ring the bell and deliver it, but she said that would make her look stupid.

I tried to tackle the problem in multiple ways. For one, I tried to remain alert for the sound of her door opening–unfortunately, it was well-oiled 😦 –and would dash to her room to handle any delivery that came. This really meant dashing out at all sorts of odd times. I’d be on a phone call, and I’d suddenly have to rush with a hurried “excuse me” and it would be a while before I could resume the call. Or I’d be mid-sentence in some work, or mid-idea, and lose the train of thought. My mother resented my rushing into her room, too, because again, that made her feel incompetent.

I also tried to reduce people dropping by to her room. I told the travel agent to deliver tickets to me after ringing the bell, saying “Mataji gets disturbed.” They insisted that Mataji was fine and alert and continued to deliver things to her. I tried telling them that Mataji gets confused handling important documents, and they insisted that Mataji did not.

In those days, I was doing some assignments where I was preparing documents and reviewing papers for some people. These papers needed to be delivered to me, and I would coordinate with the receptionist of the firm to know when the delivery would happen. I had explained to the receptionist that my mother was unwell, and I needed to therefore be told when a delivery was scheduled. Not the exact time or anything, just let me know in the morning that the boy would come sometime today, so that I was extra alert (I’d even hover in the corridor, waiting, to prevent an explosion at home). I told the project coordinator at this firm, I told the receptionist.  All agreed; it was, after all, a small thing to do.

One phone call.

But of course, the receptionist did not call. The delivery boy came, tried to engage my mother into conversation, told her how important the documents were and all that. I’d gone down to buy veggies; by the time I returned, my mother was totally agitated and extremely tense at having been given a task she didn’t want. Her lashing out at me continued for hours.

I called up the receptionist and reiterated that there was a problem here, and to let me know if she finds it infeasible to inform me so that I can think of some other way to collect documents from them. She seemed dismissive, so I tried talking to her boss, someone I’d personally known for years, and rather well.

I’ll never forget how rude he was to me.

He basically accused me of being nitpicky and overparticular and said, “My people have better things to do than go around calling you just because something is scheduled for delivery. We do important work here.”

“This was a procedure she and the project coordinator had agreed to, and all I want to know is, will you be able to follow it or not.”

“I won’t ask my people to waste their time,” he told me.

I was shocked. I had told him earlier, on a personal basis in the past, that my mother was having many problems. I was not asking for a favor, only whether an agreed procedure was going to be followed or not. Even if the answer was no, he need not have yelled at me. God knows, I had enough yelling being done at me already.

I did not bring up this or any other issue with this man after that day. His reaction was a turning point for me, because I realized that I could not expect anyone to make even a small gesture that would make life easier for me.

People are not obliged to understand the problems of others or to act considerate.

I also knew that I would, sooner or later, have to stop taking up assignments that required any coordination with people who would not respect problems they did not understand.

This is what I’ve found: people often don’t understand a problem that they haven’t faced themselves or haven’t seen happening to someone really close to them. If someone who seems an “other” to them (someone unlike them) explains a problem that requires a leap of understanding or any effort, most people dismiss this problem as unlikely, non-existent, exaggerations, lies, whatever.

Yet it is also true that our lives would be very poor indeed if all we understood was what we’d directly experienced.

In this man’s case, I was an “other” being a not-so-ambitious woman working from home, and a person more “organized” than him (he delighted in crises and handling them).

So this is what my work life was like. Try to imagine someone working in her room, with part of her attention tuned to the tiny sounds in a room at the opposite end of the apartment:

That sound of the moving of the chair–is she trying to get up? Has she forgotten she can’t walk without support. Rush to hold her and support her to the bathroom.

Hey, did the door of her room open? Run and see what happened. Could she have walked out? Has someone come?

Is that her voice, calling out?

What was that thud? Did she fall?

Sort of gets in the way of concentrating, no?

I kept tuning and tweaking my assignment profile to reduce interactions and deliveries. I took work where people were comfortable with e-mail (this was back when not everyone used e-mail). Encouraged “conference calls”.

Stayed at home, my ears tuned, my mind split.

My mother was, at this time, showing all those challenging behaviors so characteristic of dementia. Harming herself. Hurling accusations and complaining. Fearful of theft and attack. Shameful of her memory loss, and hiding it by yelling at me.I’ve written about some of these in earlier blog entries this month.

Working from home, being her daughter, I took the brunt of her agitation and criticism. As I was the daughter, everyone around me also held me responsible for her and blamed me for whatever she complained about. Son-in-laws and young grandchildren are not directly responsible for an ageing mother’s unhappiness.

I found my productivity falling, and my morale. This could not go on.

I’ve always loved my work. I have not been ambitious in terms of position or power, not aimed to be CEO or such stuff, and I hate office politics and pleasing bosses or placating their egos. But work, I loved my work. I found coding delightful, loved testing, loved system analysis and design. I enjoyed reading up stuff and digesting it and structuring it into training material. I could work for hours and lose myself in that world.

I didn’t want to stop working, but did I have a choice? Work involved interacting…

By late 2002, I barely had any time to do anything other than avoiding crises regarding my mother. Professional commitments were squeezed in short timeslots, and gradually phased to very low levels. I continued select assignments, and began considering moving over to work I could do completely on my own, such as preparing documents that could be packaged and sold. Or writing books. I wanted work with no time pressures or accountability.

I took up other writing in a hope that it would give me back a sense of creativity and joy. Writing articles and interviews would need going out and meeting people–but what about stories? I’ve always loved reading, and this thought fascinated me. I had no training in writing. I’d barely managed acceptable grades in English, and knew nothing of literary analysis. But I did love reading stories…

When I’d moved in with my mother, I’d seen myself as a professional living with her mother so that the mother had company and support. Over the years, I slowly moved my role-perception of myself as “professional who is also caring for her mother.” Then it became “a caregiver trying to remain active as a professional.” And finally, I moved out of active professional work and into work I could do at my pace, work with no external pressures or accountability, where revenues came after I’d completed the work and there was no advance payment.

This was not something I announced, though. It sort of seeped in and remained unstated.

It is a matter of concern how, in a society where “family” is so important and people are so proud that elders are taken care of, there is no respect for the persons who make this happen. Caregiving is not seen as a role. People assume that perfect caregiving happens incidentally, without any compromise in an active life, much as homes were run perfectly earlier without housewives doing anything, and children grew up into lovely and responsible adults without mothers doing anything that was considered important.

What sort of a caregiver was I if my mother was not getting better? If she was always complaining and unhappy? What a horrible report card to have…

Being reticent about my shifting priorities also meant that I was quite uncomfortable with erstwhile peers and in alumnus meetings where people exchanged visiting cards and business leads and showed their friendliness by inviting you to quote for a system development. When I said my mother’s health was poor, and I was currently not taking up new assignments, people would make a face and turn away, like I’d wasted their time. We were all in  our forties, the time when the exceptional and ambitious head to CEO seats, and the rest desperately try not to seem like failures.

In addition to the overwhelm of the role and work, and the sheer amount of tension that never let up, there was this gnawing sense that I wasn’t doing anything my peers considered valuable. Not doing “productive” work. Switching from predominantly professional work to predominantly caregiver role seemed a reduction to be ashamed of, and not mention. I was not an interesting person any more, not even effective in my new role, because, as people pointed out, my mother was not improving.

Once, a fellow-alumnus a few years older than me actually pulled me up, telling me I needed to organize myself better because people don’t stop working just because there is illness in the family.

I felt I was repeatedly being considered a failure, and I hid.

Funny thing is, it is more respectable to say you are on a sabbatical to recharge yourself, than to admit you had to substantially reduce work to become a caregiver. The latter seems like a failure of a person to juggle multiple roles and has an air of defeat. Things are changing now, or so I hope. They should, because caregiving is a necessary role, and important.

We would all like to be cared for, wouldn’t we? Well, someone has to do this caring…

Caregiving is a “nothing” role because people around them make it so, and the caregivers themselves make it so. IA friend once told me, If caregivers are an invisible community, sometimes even invisible to themselves, then this invisibility is the first thing that has to change.

I write about these past years now, because I feel that the only way caregiving will become understood and respected is if people  share their experience as caregivers, the pluses and the minuses.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

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