Of probabilities and acceptances and dementia risk factors

On this day eight years ago, a senior neurophysician told me my mother had dementia.

My mother and I sat in his consulting room. The doctor had conducted a number of tests, checked her MRI, and asked her many questions. When my mother, a highly intelligent woman who did masters studies in three subjects, was unable to answer his question of what equals 100 minus 7, she looked utterly woebegone, and somewhat ashamed.

Finally, the doctor turned to me and said that for her form of dementia, there was no treatment, let alone cure. He suggested that I try to keep her mentally and physically active, and hope the progression was slow.

I asked him, “Is the problem hereditary?”

“With a probability of fifty percent,” he said.

Fifty percent.

It was just too high.

The number may not seem high to others. To me, seeing my mother lose herself bit by bit, and knowing that I may be like her a few decades from now, the number was frightening. Unacceptable, I may have said.

In the beginning, just after hearing the probability figure, I lived in denial. While looking after my mother, I convinced myself I’d never be like that. I lived an active professional life, and such a state seemed too foreign to me. Then, slowly, I started accepting that maybe there was a chance, but I was determined I’d never let it happen to me. I would do mental exercises, I would eat right. When my mother spilled something, or fumbled while walking, or was unable to do a simple task (simple to me), I egged her on, part of me hoping that if she improved it meant I’d never suffer her fate.

But meanwhile, I also knew it was time to start redesigning my life to include things I wanted to do. The desire to write was always high in me, and I began writing. Essays, stories, articles. Not much, but I started. Not whole-heartedly, either, but at least it was better than not doing anything at all.

Now, my mother’s dementia is obvious to even the most casual of visitors. People find it uncomfortable to visit her, perhaps because it frightens them. Most people are not used to facing illness, or people in the process of decay and dying. Such interaction does not fall within the ambit of positivity and cheer we are all expected to embrace all the time. People want to say, don’t be silly, you will improve. But the sentence is such an obvious misfit for my mother, that visitors feel robbed of conversation. Empathy is difficult to invoke when the future prognosis is not cheerful; most of us are not emotionally equipped for it or sufficiently at peace within ourselves for it.

Even more amazingly, the exclusion extends to me, because looking at me reminds them that I am confined substantially because of my mother’s situation. So, when friends say, let’s go for an outing, and I say I can’t, they say, why, and I say, I can’t leave my mother alone, to them I am not a fun person any more. Fun, after all, is defined by outings, parties, movies, malls, trips to Europe and Singapore and China, socializing. Fun is not interchanging ideas with others.

Life is actually quite simple now. My resistance to reality has gone. My mother has a condition; I do whatever I can for it. I accept that this may happen to me, and do whatever I can to delay such an onset. Acceptance has made me empathetic about her situation and kind to myself, and released energy to be creative in avenues available to me.

Why am I writing this today? Because today is the anniversary of the formal diagnosis. It is also my birthday, and thus a milestone to reiterate my conviction: the best way forward is to first accept a situation and release energy frittered away in resentment and resistance and denial. Then, I move forward.

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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.

One Response to Of probabilities and acceptances and dementia risk factors

  1. RAJESH NAIK says:

    Great blogs!! Happy birthday

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