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.

I first glanced at the clock–it was 5:00 pm, but hey, it could well have been five a.m.. The sun was low in the horizon, but that happened in the morning, too, when the sun rose. I could talk of the evening tea, but tea could have been had in the morning, too. I mentioned lunch, but she was sure it happened yesterday. And wasn’t that dinner? She had slept after lunch, and apparently had no way of knowing whether it was night sleep or afternoon sleep that she had got up from. I finally told her it was evening because it was getting darker and it would soon be night, and she would see that, but the whole business of this strange confusion and the difficulty I faced while explained unnerved me. “But how can I know now?” she asked.

I had no answer.

My mother used to be very fond of TV serials, and was used to planning out her day’s viewing early morning by marking the selected set of programs in the newspaper’s TV program page.

But around this time, she started getting very puzzled about that, too. She started calling me to ask me to put on a program of her choice. I would point out that the program she wanted to watch had already happened, or was not scheduled to happen till a few hours later. Her logic was simple: she wanted to watch a program, she had marked it in the paper, and it was my job to adjust the TV so that she could see the program when she wanted. Why wasn’t I doing it? Was there something wrong with the TV? I explained and explained, but she did not understand. I was utterly dismayed at this decline, and clueless on how to handle it. She would keep calling up the TV repair man to make them correct the TV for this; the repairman would be unable to understand what she wanted, and would believe there was an adjustment problem and struggle to repair it.

I tried telling my mother a few times that it would not be possible to do what she wanted, but she dismissed me saying, “How do you know. You are not an engineer!!” Which was even sadder, because I am an engineer, and she had been so proud of that fact just a few years ago.

(This was some years ago; I think some tech chaps must have heard her, because now they do have weird tech solutions that allow you to watch programs at whatever time you want, in some limited ways 🙂

One day my mother said something which struck my heart. I was telling her she was mistaken about something, and had forgotten something (this was in a normal, nonconfrontational situation) and she turned to me, very sad, “When I can’t remember something, how can I say whether you are telling the truth or not? Why should I believe you?”

That she had memory problems is something I’d known. I’d just not connected it with her weird behavior. But now it was dawning upon me that her memory/ brain was damaged to a point that it was affecting things we considered simple and straighforward. That memory problems didn’t just affect her in terms of misplacing a key or forgetting a name, they caused a severe disorientation about everything around her. It struck me that some problems I had assumed to be stubbornness or meanness or stuff like that,  could have stemmed from this.

I still was clueless on what I could do. I had no way of explaining things, because logic and explanations failed to penetrate. Most of the time, she did not trust me, and would rather rely on total strangers. She saw me as an incompetent (and often mean and inconsiderate and dishonest) child, and would rather talk to some outsider much younger that me because they were “older” than me, as she said.

Around this time she did a lot of things that caused me acute embarrassment and hurt, and I could think of no way to handle it. I would alternate between trying to explain things, withdrawing and suffering, or exploding. Nothing I did could convince her that I was well-meaning and honest and that I was more likely to help her than a stranger living at the other end of the corridor. I did not know h0w to “reach” her, and almost always, my attempts backfired.

Here is one: my mother was scared that she would be cheated out of her house and money. I blame TV serials and gossiping old people who perpetuate this sort of fear by exaggerating problems of some people and never talking of the families where there is no such problem.

My mother would keep wanting to see her bank passbooks. She could no longer understand the magnitude of numbers and sometimes fumbled over simple arithmetic, which made it even more difficult for her to get the security of being well-provided for. That her pension was more than adequate was a concept she could not register. She had lived a very uncertain childhood, orphaned and lost her sisters when very young, lost things during partition, been cheated in her early life, and that fear was probably deep-seated in her, so even a small TV episode or a piece of gossip awoke those fears. She even feared I would somehow rob her of all her money and pension and everything else, and kept accusing me of that intention, or asking me to put it in writing that I would not cheat her. I did it the way she said, but it really, really hurt.

When I was talking to Nayantara a few weeks ago, she mentioned a problem she faced of a suspicious parent (read interview here), and it struck me this was a common way that generation of elders sought security: written and signed promises. Maybe if people know that their elders need this reassurance and that this is common, they will not feel so humiliated about it…I’d definitely have been less hurt had I known this was happening in other homes, too…

You can check out more of my personal experiences during my mother’s early and mid-stage dementia using the various menu options under Caring for mother, especially the option: Living with dementia<br/
Read a collection of caregiver interviews (like Nayantara’s) at the Dementia Care Notes website Caregiver voices

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal 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. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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