Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

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Of Mom, and a story about dutiful worlds

Centuries ago (okay, around fourteen years ago), after my father’s death, my mother was convinced that my sole task in life should now be keeping her happy. She wanted company. All the time. She would allow me toilet and meal breaks and meal-cooking breaks, and I could take off time when she was resting, but if I dared say I had to go out for work, I’d be subjected to a lecture on duty towards her, and on my greed to want to work.

This was back when no neurologist we consulted had bothered to tell us about dementia or even cognitive decline, though my mother had complained to them about memory loss. We had no idea that she was having problems staying oriented and in understanding things, let alone changing her way of thinking. We have no idea that she probably wanted familiar faces around her all the time because of those (unstated) problems.

Possibily because she grew up in a rather well-to-do family, my mother had always believed that anyone who worked for money was greedy. That people who worked in jobs did so only for money, which was a filthy thing to do. She had a phrase she often used to express the “greed” of persons who worked hard in paying jobs: निन्यानबे का फेर (ninyaanbe ka pher, OR, the trap of ninety-nine).

It’s an interesting concept. Basically, someone who has 99 rupees will want to earn one more rupee to make it a round 100, and that wanting a bit more to round it off neatly will keep the person on the grind. A bit like Tolstoy’s How much land does a man need.

After my father’s death, my mother began commenting on my being in the निन्यानबे का फेर trap very frequently.

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All in a day: what care for a bedridden mother involves

My mother’s attendant (an excellent, competent and empathetic worker) is off to her village for a few weeks, and hubby and I are handling my mother’s care 24×7. My misadventures with the use of other trained attendants (and substitutes) is already well-documented (read this blog entry: Trained attendants for dementia home care: sharing experiences), and as ever, this time too, we’ve decided to handle the care ourselves rather than run around to agencies, pleading for another misadjusted, negligent, untrained, unhygienic attendant for the stop-gap arrangement.

In a post I made just a few weeks ago, I mentioned that late-stage care is very different from care of early and mid-stage dementia patients. I also mentioned what care involved, but didn’t quite describe the impact on the persons giving the care. But today, with my husband off for work for some days, and as I try to mentally and physically adjust to handling the care solo, the nitty-gritty of care is all I can think of, so that’s what this post will be about.

A few years ago, when my mother was in mid-stage dementia, my main challenge was handling her confusion, disoriented, rages, and despondence. I also had to prevent her from hurting herself, which often needed dashing to hold her when she would try to walk without support (because she had forgotten about her balance problem). I needed to help her bathe and eat, and though she sometimes resisted or argued, she cooperated at other times. She wanted to remain clean and well-fed; the only problem was, she had forgotten how to achieve all that. It was tricky to support her while walking, but I learnt techniques that were not too tiring. We managed, she and I, with the help of grab bars, stability exercises, and sheer luck.

My emotional connection with my mother during all this was sometimes positive, sometimes not so positive, but at no time did I forget that she was “there.”

Now that my mother is bedridden, the required caregiving is heavily physical. Care starts at 2:00 am, when her diaper is checked. If it hasn’t leaked, she just has to be turned, an activity that can be done using just a night light. If the diaper has leaked, that means removing the soiled diaper, removing the soiled underpad, clothes, sheets, cleaning and drying and powdering her, putting fresh sheets, clothes, diaper, underpad, all of which requires more strenuous and repeated turning this way and that, under the glare of a light, waking her up. Manipulating a diaper out and in is tricky because she locks her knees tight and it takes quite some energy to prise them open sufficiently to thread through the diaper flap. Keeping her steady enough to Velcro the diaper needs a lot of holding her straight, too. Often, she resists and glares. Or she lies there, lump-like, passive, unwilling. She was asleep, remember? This is intrusion.

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Two years down the line: Care for a bedridden mother with dementia

My mother often told me stories when I was a child; while I have forgotten the details, some images linger on. Like the one of a delicate, sweet princess who was so loved and pampered that she never had to put her feet down on the floor.

It is almost two years now that my mother has been the princess now, bedridden as she is, and in late-stage dementia. We try and give her all possible comfort though she rarely utters a word to explain what she wants. I am not sure she feels pampered, though. For it is not by choice that she lies on bed and cannot even turn, nor is her silence her choice.

I have described this stage of my mother’s dementia in previous posts (you can read the entries chronologically is you check out the page here, and read from bottom up (sorry, but that’s the way blogs work). The milestones are covered in A new phase of caregiving: a bedridden mother, Ramblings on love, hate, and a life worth living, A year later: One year of care for a bedridden mother, Enjoying fun time with my mother, Keeping her happy: Challenges of late-stage dementia care,and Some days are good.

But as we complete two years, it is perhaps time for another update, even though nothing drastic has happened.

Most volunteers and organizations who aim at supporting family caregivers of persons with dementia focus on early and mid-stage dementia. Challenges tackled are typically related to agitation, wandering, aggression, and other difficult behavior, and volunteers counsel caregivers on preventing or coping with these, or on enriching the life of patients through reminiscence therapy and activities and things like that. Caregiver manuals typically skimp over late-stage care, possibly because in many countries, patients in this stage are cared for in institutions.

Not so in India, where almost all care for all stages happens at home.

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Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

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Summary post for the Jan 2011 blogfest

Having driven myself crazy trying to locate something in my own blog, I finally decided to create this summary post to give a quick reference point for all 31 posts I made this January. Here goes:

Jan 1: A new year, and this begins my month-long blog-a-day : Declaring my intent to blog through every day of January 2011

Jan 2:Day 2 and warming up to the blogging: How people, because of their ignorance about dementia, may be inadvertently hurting dementia patients and their family, and comparing awareness of dementia with other medical problems

Jan 3: Ignorance is not bliss… : Sharing memories of how persons, ignorant about dementia, have repeatedly hurt my mother by their insensitive and presumptuous remarks, and dismissed my explanations because they projected their own needs on my mother

Jan 4: Enjoying fun time with my mother : How I have found that my mother and I can enjoy many activities together, such as playing games and telling stories, even though she cannot really remember rules of games or follow a story.

Jan 5: The unexpected quality of openness : Having fun time with my mother resulted in our being relaxed with each other and her being able to open up more about her fears and problems

Jan 6: Being the Wind, being the Sun: Meandering thoughts about the years, my mistakes, my opening up, and learning. A decision to look into the past to see those mistakes and see how things could have been different if I had understood dementia earlier. The past is over for me, but others are still on that caregiving journey…

Jan 7: Pattern spotting : Explaining my belief that the tendency to fit every behavior into a rational model (that attributes intention) causes a lot of pain if the person behaving oddly has dementia; we see stubbornness and meanness where the real reason for the behavior is possibly confusion and disorientation. Sharing anecdotes that could be interpreted in alternate ways if I’d known of her dementia

Jan 8: Hints and misses : Things are always clearer in hindsight. Looking back to see how some incidents in the past (before her diagnosis) were indicative of dementia

Jan 9: Learning from our experiences : Explaining why I have decided to share, in the following blog entries, the progression of my mother’s dementia, and how it changed her life and mine.  What follows over the next few days may not be pretty.

Jan 10: Beginning to understand the reality of “memory loss” : How it started becoming obvious to me that “memory loss” was not just forgetting where you placed a key; it meant you couldn’t read TV timetables or make out whether it was morning or evening: anecdotes shared.

Jan 11: Murderers, thieves, and an old woman amidst them : My mother’s confusion and disorientation created many difficult situations for us. She was scared and unhappy, and I was hurt by her accusations and clueless on how to handle suspicions.

Jan 12: She doesn’t cook for me : Describing the difficult years of care, of being accused of neglect by my mother because she forgot things, of embarrassment I faced, and criticism

Jan 13: Hurting herself without meaning to : Incidents recalled when she exposed herself to cold weather or hot, skipped her medicines, and so on: all without wanting to hurt herself, but too confused because of her dementia

Jan 14: A common loneliness…: Looking back at those difficult years, trying to understand how lonely and insecure she must have been, how I did not understand, how I lacked ways to reach her. I, too, was overwhelmed by her constant suspiciousness and fault-finding and repetitive behavior

Jan 15: Care for everyone but a dementia patient… : Beginning to describe how I tried to adjust my life to care for her. How dementia onset is so insidious that one does not realize one is caring for a patient, and there is no guidance on how to handle it. I did not know I had embarked on a long caregiving journey…

Jan 16: Paring down to essentials : Continuing my description of how I had to keep shaping my life to cope with my mother’s continuously increasing memory loss and disorientation, and the consequent demands and accusations and insecurities. How people around me did not understand or support, and I had to keep cutting out chunks of my life

Jan 17: Reshaping career and identity : As my mother’s dementia grew, the impact started affecting even my ability to continue with professional commitments, and major adjustments were required

Jan 18: A new place, a new start : Describing the move to another city, how it was difficult for her to accept, and how I tried to gear the new apartment in the new city to exactly fit what my mother needed

Jan 19: The turning point, and becoming proactive : Sometimes, there are no simple solutions.  Describing how, when some persons close to us just would not understand dementia and kept hurting my mother by their comments, I had to take a number of drastic steps to give her a space that was safe. And how she finally started turning around and relaxing in this space I finally managed to create for her.

Jan 20: Not Alzheimer’s or Parkinson’s? Then why’s there a problem? : People are strangely reluctant to accept that someone could have a genuine problem if they have not heard of it.

Jan 21: On diagnosis, on doctors who may not know or care : Sharing my distress at how poor awareness of dementia is even within the medical community. How doctors in emergency services and in other specialties dismiss my warning that my mother has dementia.

Jan 22: Our first consultation with a specialist : Beginning a set of entries on my mother’s medical problems and our visits to neurologists. Here, I describe the fall that marked the beginning of my mother’s problems, her deterioration, and our first consultation with a specialist who was a good shrugger and explained nothing.

Jan 23: When the specialist laughed at her : Continuing the description of our attempts to find out what the problem was; this second specialist was one who wouldn’t bother to look at her MRI and who laughed at her.

Jan 24: Finally, some clarity about the diagnosis: The third specialist gives us a diagnosis, and tells us what to expect, but I could have done with more input on the “care” aspect

Jan 25: Echoes across caregivers, touching lives : I talk of my commitment to share multiple caregiver experiences through my website, and share my experiences of talking to other caregivers; there are commonalities we all share. Yet many caregivers are unable to speak of our problems, even under the cover of anonymity, and instead carry the hurt inside them for years. Links to available interviews.

Jan 26: A sense of loss : When a dementia patient loses his/ her memories, we suffer not just because we see our loved one suffering; we, too, lose our shared memories and our shared past. For spouses of patients, this is especially heartbreaking.

Jan 27: Understanding, believing, denying: On dementia awareness, and why just saying “memory loss” is not enough; people do not get a measure of the horror of dementia with that innocuous phrase. And shared anecdotal evidence of how even persons, even medical persons, who theoretically accept dementia as being caused by a medical condition are not emotionally convinced of this.

Jan 28:Over years of caregiving…: A rambling of how over a decade of caregiving has changed, or hasn’t changed me. I talk of the shifting profile of my work, my social life, my approach to life, and yet some changes are not deep enough

Jan 29:Past tense and kadhi pakodi : How someone thought my mother was dead because I often use the past tense to describe her likes and dislikes. Tracing her fondness of kadhi pakodi over the years to show what has made me inadvertently switch to the past tense. We all change over the years…

Jan 30: My mother, a collage of my memories : A nostalgic piece about my mother, her childhood, my childhood, a jumble of memories, some shifts in impressions as I re-examine things with adult eyes. Some scanned memories, some tears that make me stop writing.

Jan 31: Phew! A month-load of blogs done; time to pause to breathe and have dark chocolate : Blog marking end of 31-day blog fest and over 51,000 words, and declaring I’m off to have dark chocolate and pamper myself by doing weird stuff.

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My mother, a collage of my memories

I’ve been writing a lot about my mother as she has been these last few years. She is now bed-ridden, apparently peaceful and happy, and mostly silent, uttering a few words for an immediate need, but not articulating anything complex. But she was very active some years ago, sharp, very clear about what she thought and wanted, and today I’ll step back into the past and share more of the person she used to be before all this happened.

My mother was a very private person, for one. But she was also very particular about helping people and often went out of her way to do things for them. One thing she was very insistent about was about donating her body. At a time when she was already facing problems writing, she once heard someone say that body donation does not happen if the person has not clearly declared the intention of body donation. A couple of hours later, she handed me a paper. Here’s an excerpt:

My mother does not know I blog. But given the above, I think I am meeting in intent what she would have wanted.

Outside India, people understand that people who get dementia were not “lazy” or inactive, low-IQ laggards who could have avoided such a fate by being active. But in India, as I wrote some days ago, people behave as if dementia is something that touches only people who were, in some way, negligent.

No one could have called my mother lazy or low in willpower or negligent.At a time when women barely studied and very few studied up to graduate level, my mother completed multiple post-graduate courses. She taught in colleges and schools till she had to give it up because of my father’s frequent transfers and other such problems.

When I was in school, my subjects were very different from what she’d studied. But till I reached class eight, she tried to stay abreast and teach me when needed. She had never studied geometry, but she picked it up for me. And Sanskrit.

She loved driving. Absolutely loved it. Drove much better than my father did. I remember once, when a colleague of my father had to be dropped somewhere, he somewhat hesitantly requested that my mother do the driving instead of my father 🙂

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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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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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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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