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.

Around that time, she started exhibiting a pronounced balance problem. My mother, always a brisk walker, would now list to a side, and would sometimes walk very fast to balance that offset because her body was tilting. She complained of increased vertigo. Our GP suggested some tablets (stugernon? stemetil? something of that sort). Some improvement resulted. A senior GP we consulted suggested the same medication. When I queried him about the cause of her problems, he told me that there were multiple possible causes, and diagnosis was often difficult. However, the treatment was the same regardless of the cause, so there was no point in spending a lot of time and effort in diagnosis.

My mother showed reduction in vertigo episodes, but her walking got worse. The GP discontinued medication.

By now my mother needed to hold someone while walking (and of course, as she walked very fast, that person had to walk equally fast). She would take long morning and evening walks, and I had to be there to support her. She would clutch my wrist very tightly for support, almost numbing me, a very ineffective way ofsupporting her, but she insisted on doing it her way. She was terrified she would fall if held  any other way.

I remember noticing something around then, and that was the way she would sometimes not respond to a question and assume a somewhat strange face-twisty expression. Or when a distant acquaintance would ask something, and she’d give a strange answer, something a person of her intelligence should not have given; if I queried her later, she’d shrug. I thought she was acting sarcastic and mocking, sort of nasty. My mother had always been extremely intelligent, and also sarcastic, and so I assumed she was just acting up somewhat. Getting antisocial. In hindsight, I think that she may have been occasionally lapsing in attention, losing the thread of a conversation, or blanking out, and covering it up.

With her walking problem now obviously inconveniencing and alarming, our GP suggested consulting a neurologist. We fixed an appointment at one of the top Delhi hospitals, with a reputed neurologist. This was around July 1996.

This top, highly-recommended neurologist was probably so busy becoming an expert that he’d forgotten that people are people. His “bedside manners” were absent; he treated my mother with cold impersonality, not even noticing her concern and worry, behaving as if she were some dumb creature. He got an MRI done, and as we sat across him, he squinted at it, film after film, grunting hmms and haahs. Finally, I asked him what it was, and he shrugged. “Age-related,” he said. “The brain shrinks with age for some people.”

“The MRI report says mild to moderate cerebral and cerebellar atrophy,” I said. “Isn’t that a problem?”

He shrugged. “It can happen when people age.” He gave a few medicines to try out. I asked him whether the problem would go, and he shrugged yet again (yes, he was a good shrugger). “People get such problems with age,” he said. He did not even look my mother in her eye. He tested her walking, but though she was well above 65 years, and he was a neurologist, he did not test her cognition.

The overall impression he gave was of disinterest, of inevitability, almost like it had been stupid of us to approach him for something old people get. It was as if old people should expect nothing better.

I now understand that just because some medical conditions are often found in old people does NOT make them normal. While brains shrink with age, not all such shrinking is a “normal part of ageing.” There is a massive difference between saying something is “part of normal ageing” and saying “this is often found in old people.” The former is called normal, and the latter could be a medical condition more frequent in older people.

Balance problems are not normal ageing. But the doctor gave us an impression that they are. He gave us no warning that these problems would worsen and lead to total dependence in some years. He did nothing to prepare her or me for the care that would be needed.

As for dementia, he didn’t even check my mother for cognition problems, though her confusion has started becoming obvious even while she talked to him. My mother was around 70, a reasonable age to check for cognition problems.

It is possible that my mother’s cognitive decline at that time was not sufficiently visible to be classified as dementia, or even as mild cognitive impairment. But surely he should have checked for them? Her brain scan had shown decline in the four years after the head injury; why did he not think of checking for all brain functioning? He did not use any formal instrument like MMSE, and he made no notings in his notes regarding it.

It brings me to a doubt I often have: our understanding of what is “normal” age-related decline is surely affected by the fact that we see dementia behavior around us called “normal ageing.” And doctors are products of the society they grow up in…

The progression of dementia is a continuum, not an absent-yesterday, present-today type of situation, and a lot of what is “normal age-related cognitive decline” is possibly subjective unless the doctor conducts a test. Even the tests are not conclusive, because an intelligent person may not show a bad-enough performance in the tests although already suffering from dementia. People sometimes talk of mild cognitive decline, too. This is all rather nebulous. A paper from Alz.org on mild cognitive decline admits that:

Key questions that researchers continue to investigate include the following:

  1. How much memory impairment is too much to be considered more than normal?
  2. How much memory impairment is significant enough to be considered a symptom of mild dementia?
  3. How hard should one look for subtle abnormalities in other areas of thinking?
  4. How do we know if these other changes are normal aging or worse?

All this is very confusing for laypersons. But I think that the doctor was not alert enough to test her or suggest that we get such a test done later. She was in the age group where such tests are indicated.

When I took my mother to this doctor, I knew nothing of either ataxia or dementia, so I could not have asked the right questions. Doctors perhaps have their own criteria, and their own judgment of when to tell and when not to. I do not know about what their code of ethics requires. But I depended on him, as a medical professional, to tell me what we needed to know to handle my mother’s problems. Present problems. Anticipated problems.

He failed to do that.

My mother had the medicines prescribed by the doctor; they did not help her balance. We persisted for some months, survived more visits, more shrugs, indifference and frowns. Her finally said that the only thing to do was give her a daily aspirin for good blood flow in the brain. Even at this point, which was when he indicated that no further visits were required, he did not openly talk to us about the prognosis of ataxia. He did not mention the possibility of her developing dementia, though my mother’s decline was more obvious over the six months we consulted this doctor.

I strongly feel this doctor did us a disservice. Some years later, when I asked a more sympathetic doctor to do an evaluation and give me a clear diagnosis for my mother, this doctor conducted various tests and all that, but did not ask for another MRI; he used this very MRI to show me (not that I understood it) the shrinkage areas and explained why they were impacting my mother’s balance and her other abilities.

Tomorrow, I will write about our trip to another senior neurologist in another top Delhi hospital. Which was another failure…

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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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