Past tense and kadhi pakodi

A funny thing happened at one session where I was discussing dementia challenges with some caregivers.

We were all talking of problems typically found, and I was sharing some anecdotes of mine, some mistakes, some solutions. There was one gentleman caregiver who was in a bad state, desperate for solutions of how to handle his father. He was sharing his problems and listening to what others were saying, making notes.

At that moment, someone who knew me well asked me about how my mother was doing, and as I began describing, this gentleman interrupted me with a shocked expression.

“Wait,” he said, “you mean she’s still alive?”
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A sense of loss

Losing a memory is horrible; it is as if a part of oneself is lost, because ultimately, our sense of identity is an integration of all the memories and thoughts we hold close to us.

It is also horrible to find oneself wanting to remember something, and not being able to, and not having anyone who can help us fill up the gap. And I am not only talking of what a person suffering from dementia feels; we all have experienced this some time or the other. Perhaps that is why we like to have around us, for at least some of the time, people with whom we have “shared memories”.

This fact came home to me some months after my father died. I was on my evening walk, and suddenly remembered an incident of the past, but could not remember some of the details. It’s okay, I thought, I’ll go home and ask my father. Then I remembered that my father was dead.
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Finally, some clarity about the diagnosis

After our interaction with the second specialist, my mother was understandably quite upset with neurologists in general, and not willing to venture out again.

Our GP, who was also a neighbor and knew us quite well, had no suggestions about what we could try (other than try another specialist). He said the problem was most probably neurological, but did not give a name to it (I think he suspected the diagnosis, but felt it had to be delivered by a specialist).

My mother, meanwhile, tried a round of homeopathy, gave up. She would tell friends about the walking problem, and even if she didn’t, it was visible enough. A family friend brought along a doctor sister, who examined my mother very carefully, and then said she suspected Parkinson’s. This lady was working as a volunteer doctor in a village and she told us that problems like my mother’s were often undiagnosed. She reiterated that people usually labeled such problems as ageing, but these were not ageing, and we would have to take care of her as the problem would get worse. This was a short visit; perhaps she would have said more if we had met her for a longer time.
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When the specialist laughed at her

The first specialist we consulted may have shrugged off follow-up visits, but his manner had been so unsympathetic and the information he gave so scanty that we were not sure we’d done enough for the situation. On the other hand, the whole experience had also left all of us–and especially my mother–reluctant to go to another doctor. My mother felt insulted, and probably was shaky inside because she was experiencing more cognition problems than were obvious to us. Now she did not feel she could talk to a doctor…

It took my mother a while to agree to consult another doctor. Her walking problems were alarming by now, and her memory loss quite obvious within the family. We finally narrowed down to a hospital that specialized in neurology, and where every doctor was a superspecialist. Surely my mother would get suitable attention there.

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Our first consultation with a specialist

My mother’s initial problems were mainly related to balance, though her memory loss had also started by the time we reached our first neurologist. Her balance and coordination problems (ataxia) were visible, while problems such as memory loss, disorientation, and inability to do things were in a very initial state.

I was only peripherally involved in her health at that time; I did not see myself as someone responsible for her health and helped out when she asked for help. My parents were independent, and would have resented any “interference” and I was engrossed in my life. Most of us do not get involved in parental health unless pulled into it, which often happens only after symptoms have crossed a threshold of alarm.

My mother complained of minor dizziness problems in 1991/ 1992. As she had a medical history of cervical problems, and the dizziness seemed minor and very occasional, she was not too concerned. In 1992,when I’d gone out of town for a trip, my mother drove to Pallika Bhawan, then visited an emporium on Baba Kharagh Singh Marg, where she swayed when climbing one of those arty spiral staircases. She fell, hurt her head. There was plenty of blood. A good Samatarian rushed her to a hospital where they stitched up in her head. She managed to remember the home phone number, and my father was contacted. The doctors did a CT scan which was normal,and their report mentions no “age-related” anything in it.
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Not Alzheimer’s or Parkinson’s? Then why’s there a problem?

When my mother started facing balance problems, I had no clue what was happening, but I’d heard of Parkinson’s and that was my first suspicion. When she started facing memory loss, the only disease I knew related to that was Alzheimer’s. I didn’t know much about either Parkinson’s or Alzheimer’s, but I’d heard these names, and seen articles on them. I’d made a quick mental note saying I may need to know more about these problems some day. I’d even kept some cuttings “carefully” for later; I wonder where they went 🙂

As it happens, my mother’s diagnosis was neither Parkinson’s nor Alzheimer’s. We went through multiple neurologists before I was given a documented diagnosis, and I took pains to memorize the phrases in it so that I could tell anyone who was interested the exact problem.
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The turning point, and becoming proactive

Thanks to Internet,  I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her after our move. A one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.
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A new place, a new start

Life brings changes, and my mother’s dementia challenges were not the only one we faced. In addition to that responsibility, and our respective professions, my husband and I had other obligations, too. The current living and care arrangement was not working well, and our other work and responsibilities also needed attention. After a lot of thinking, we realized that we needed to move into an arrangement that was more amenable to care for my mother as well as for our other roles.

Now for a person with dementia, any disruption is traumatic, yet my mother had to be part of the relocation. But by this time, I was more sensitive to her concerns, and every day I’d spend an hour describing how we would make sure the relocation was comfortable in the new home, surrounded by people she knew and liked. What I told her every day was repetitive, but she’d listen to it as if hearing it the first time, and ask the same questions. I understood how difficult this was for her, and I found it easy to be gentle and patient and friendly.

We spent a lot of time planning the move. The new place would have adjacent apartments where we would be using one unit set up specifically for effective care, and live in the other. And we would minimize any sense of disorientation the move involved. We took with us every object that my mother needed to feel comfortable. Her sofa. Her favorite crockery. Her table-lamp. Her curtains. We coordinated the move so that she would have a familiar environment as soon as we reached the new apartment. Disruption had to be minimized.

The new place also had some plus points from her perspective. My mother has always wanted space and privacy, and not liked people watching her. In the apartment we prepared for her, she could sit undisturbed in one room while the attendant could move to the other room (but remain alert to sounds) when my mother wanted to be alone.

Most important, the new apartment contained all she needed, and nothing more. There was nothing in the apartment that could be stolen. So my mother didn’t need to worry about any theft. Even if she accused the attendant of theft, there was not much of a problem, because everyone knew the apartment had no objects that could be stolen. No cash. No jewelry. No curios or gadgets. Only a TV, a gas stove, a washing machine and a fridge. Beds, sofas.  None of these could be stolen. My mother’s clothes were there, of course, but nothing precious. The attendant had no reason to get tense even if my mother accused her of theft. And, just as important, my mother was not tense that things could get stolen. I’d told her (and I kept reminding her) that the money and everything was safely in lockers. I’d even kept her watch in a locker, I told her. I installed a whole bunch of big, readable clocks on every wall.

It was, in a way, the best possible setting for her, and the move made it possible.

Being in a new apartment complex had another big plus point: my mother no longer had to live up to the image of an intelligent, well-informed woman, except for a few people. Most neighbors did not know her, and accepted her as an old lady who rested most of the day. For most casual interactions, this reduced the pressure on my mother.

With my focus now more clearly on caregiving, I also equipped myself better for supporting the care.

Unfortunately, things did not go smoothly for the initial years after the move, partly because of attendants who just would not understand dementia, and because some frequent visitors refused to understand my mother’s problems and limitations and said hurtful things.My mother is happy and stable now, but it took many more adjustments to reach where we are today.

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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…
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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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Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.
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A common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.
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Hurting herself without meaning to

One of the most worrisome part of the situation of my mother in those-mid-stage dementia days was how she would keep harming herself.

In the Delhi summer, with the sun shining at its hottest in a patch of the walkway in front of our apartment, my mother would dash out of the house and stand exactly at the spot where the sun lit up her scalp. (This was before I’d placed a lock on her door to prevent such outbound dashes from the apartment). Some time would pass before I checked her room and find her missing. When I would realize what had happened and rush out to fetch her back inside, she would sometimes agree easily, but need persuasion at other times. I would try explaining about heat strokes, but she would say she didn’t feel hot. “See, I don’t sweat,” she’d point out. To me her not sweating only meant the heat would hit her worse, and it did. She’d get fever, she’d shiver, she’d get incoherent.

In winter, the cold Delhi winter, she’d throw off her quilt and peel off her woollens and then sit on her bed, curled tight, till I spotted her. She would get upset if I put on the heater. Curled tight into a ball because she was cold, she would refuse to relax enough for me to slip her cardigan on. I’d have to use blankets, hot water bottles, gentle massaging of her body, to make her loosen up enough to wear her woolens back.
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She doesn’t cook for me

I had started working from home before my mother’s dementia-related problems became prominent. We moved in with her after my father’s death, when none of us suspected that those tiny problems we saw could have a medical reason. She seemed normal enough, except for her growing balance problems. I would do the cooking because I wasn’t comfortable with her working in the kitchen because she could sway at any moment, and would grab whatever she saw. Sometimes one would find her on the floor, a chair fallen on top of her–ouch 😦

I handled all the cooking with some help from my husband. Most of the time I cooked food the way my mother had cooked for me, using the same spices, cutting the veggies in the same shape and size, making dishes as close to the ones she had cooked. I did this so that she was comfortable with the food and could eat well.  Except that now my mother wanted food the way her grandmother cooked for her…

Because I worked through the day, I would finish off cooking in the morning. Daal, veggies, roties, all would be placed in hotcases, so that anyone could eat whenever he/ she wanted without my having to interrupt my work. This was something my mother herself had done for years now–finishing off the cooking early to have the day free for whatever she wanted to do.

But my mother had changed now. Her standards of “proper homes” had become more traditional, reverting to her grandmother’s days. She began complaining at this early morning dispose-off-the-cooking method, and I had to start making the rotis fresh in the afternoon, as is common in North Indian houses, because, when she was a child, she used to eating fresh rotis. I tried to get my maid to come at noon for making roties, but didn’t manage.
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Murderers, thieves, and an old woman amidst them

Fear that she’ll be cheated or attacked were one common thread my mother showed, often based on things totally ordinary, or on imagined events or projections.

I remember I was once doing my strength exercises and lifting a barbell with some effort (okay, a lot of effort). As I lowered it with obvious relief, I noticed my mother at the door of the room, watching me. “Yeh kya mujhe maarne ke liye practice kar rahi ho?” she asked me. (Are you practising this to be able to hit me?). I was totally nonplussed, and could not even mutter a “No.”
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