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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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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Beginning to understand the reality of “memory loss”

Here are a couple of incidents that made me register the fact that my mother was facing genuine problems that were totally disorienting her and contorting her perception of reality. That her abilities had deteriorated to a point where she was unable to understand things we all assumed to be simple.

One incident was during her evening walks. I had managed to get a maid who would take my mother for a walk every evening. After a few days of trying to take her down to walk the compound’s roads, and narrowly missing falling because my mother walked in too fast and too imbalanced a way, the venue of this evening exercise was moved to the relatively safe corridor with its even floor and grab rails.

One day, the maid told me that Mataji had asked whether it was morning or evening, and not believed the maid when she said evening. Sure enough, a few minutes later, my mother called me and asked me the same question. I was in a sort of fog of disbelief as I told her it was evening. “Are you sure?” she asked. “Yes,” I replied. “How do you know?” she asked.

That was quite an unexpected problem.
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Hints and misses

In those early years, before my mother was diagnosed, and in the period just after, there were several small things that struck us as odd or surprisingly hurtful.

I did not piece them together into ‘dementia behavior.’ I saw in them patterns that indicated out-of-touch with contemporary life, unfair use of ‘authority’, lack of love, inconsideration, and worse. I responded by withdrawing, hurt and bewildered (what had I done to deserve this), and an occasional protest. I did make some attempts to explain and understand; often these seemed to go well, but within a few hours, my mother was back at accusing me of all sorts of motives and complaining about me to anyone and everyone. Often when I meet caregivers now, I find them going through the same phase of hurt/ bewilderment/ frustration/ helplessness. Many are angry, others are sad, but helplessness about how to cope underlies most situations.

Some problems I faced were minor irritants, some were major issues. In today’s post, I’ll share some of the minor ones, which could have been taken as hints of her condition had I been better informed:
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behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking 🙂

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside 🙂
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dementia, attachment, letting go

Over the last several years, as my mother slips deeper into a confused state of lost/ jumbled/ false memories and becomes disabled for “activities of daily living”, I have simplified my communication style as well as content to match what I think she can manage. But a few days ago, when I returned from a talk on Buddhism, she asked me where I had gone and I told her. Then, she asked me what the “doctor” said, and I realized she meant the teacher, and I told her.

The conversation that followed was amazing.

I told her that Buddhism offers a model that encourages us to understand what suffering is, its true causes, and a rational way to stop suffering. I mentioned “attachment” as one of the reasons for suffering.

“I am not attached to any thing,” she said.
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Knowing what dementia is, versus understanding what it really means

A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.
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Where is Mother, or, when a dementia patient walks out

One of the scariest consequences of dementia is that patients tend to wander off.

Imagine a lady with dementia sitting at home and suddenly thinking it is time to go to office (never mind she retired twenty years ago); she picks up a purse on the table (it isn’t even hers) and heads for the door. The surroundings seem familiar for a while, but then she is confused. Now she is in a strange place, agitated, not very sure who she is or what she is doing as her original reason for leaving the house has been forgotten. Meanwhile, frantic family members are trying to figure out where Amma has gone.

Or a restless, reasonably active person walking around in the house, and spotting a door. Out of habit, or curiosity, or boredom, the dementia patient turns the knob. Nice weather, good breeze. Another step and the person is out of the house, and no one else knows. After walking a block or two, the dementia patient realizes that he/ she is lost. Agitation, confusion, fear set in. He/ she wants to return home, but is not sure of the address, or may he/ she remembers ‘home’ from a different city, a different age.
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Choosing memories, becoming a person

My mother forgot her name today. Again.

A person, an ego, is just a stringing together of a selected set of memories. I have often read this concept, but reading and agreeing rationally is one thing, and seeing it in my mother’s face is another. My mother is a dementia patient. Over the years, what she remembers of herself gets patchier and patchier. When she meets people and they ask questions, or if she feels obliged to talk, she tries to create a personality for herself by joining these extremely scant pieces of half-remembered things with events that could have happened, and with people who never existed or existed in totally different times and places. It is like the struggle of constructing a picture for a thousand piece jigsaw based on ten available pieces.

When I sit with my mother and hear her talk, I seek in her face the mother I have known over fifty years. The stern mother who insisted I had a work ethic that stand me in good stead even today. The mother who once drove for two hours to buy me the pink raffia I needed for a project. The mother who got angry at me when I came home late and and then claimed that she worried because she loved me (the equation between worrying and loving eluded me then, and it eludes me now). Come to think of it, I can construct so many mothers from the one mother I have by choosing a set of memories that seem to fit together coherently. And what does she of me? Nothing? She remembers virtually nothing about me or my childhood. Her few and far-between memories are of her own childhood, and most of them false, because she mixes up persons, years, and events. The past is a jumble for her at times. It is lost to her at others.

Essentially, all of us live only in the present moment. The past, when remembered, is something recalled in the present moment, and it makes sense to remember it only to the extent it is pertinent, whatever that means. The future is yet to come, and any dreams or fears about it are again the present moment version of what might be. We have with us only the present moment to live in, to act. All these are concepts I understand rationally, and once in a while, emotionally.

Yet when I look at my mother, I don’t know. Is her lack of memory, and her inability to think of the future an awareness? It doesn’t seem so. This is not power, this is not bliss.

Every time I visit my mother, I wonder about my own personality and ego. What I would be like if I could not remember what I usually think I am? Sometimes, the thought frightens. Sometimes, when I am feeling overwhelmed, it offers relief. Yet I wouldn’t want to lose out on memories because I can’t retrieve them–I would rather move beyond the point when I dip into them in ways that hurt or pull me back and slow me down. I want to move the way of no memory because of awareness and peace, not because of a muddle of neurons forcing this amnesia on me (yet, that’s my ego speaking, and that’s part of the problem).

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