It was in 2008 that I first noticed it. My husband and I were visiting my mother in Chennai. My mother (Amma), my husband and I were in a movie hall. Watching a Rajini film (Sivaji the Boss) in Chennai, a rather festive affair, turned out to be one of the most devastating memories of my life. While the on-screen hero was playing out an indefatigable character, Amma, my real-life hero, suddenly froze in her seat. Confused at first, seeing her unable to respond, we scrambled about for the next twenty minutes and had to carry her out of the hall. I did not have the faintest idea at the time that this brief incident would eventually turn into a drawn-out and emotionally exhaustive experience.
What followed was a series of frantic visits to several medical experts, most of them in vain as the right diagnosis seemed increasingly distant. The tremors in her hands became more prominent, more frequent. It was clear, however, that it was not related to age. By the time we arrived at the diagnosis that she was suffering from Parkinson’s Disease – what we hitherto believed to be a western disease – it had reached an advanced stage. It did not particularly help that we knew very little about the progressive condition, what it meant for Amma and what it meant for us. The ignorance, coupled with denial, left us largely unprepared for what lay ahead of us.
Parkinson’s, Dementia and Acceptance
Amma’s physical and mental health started deteriorating rapidly, and we soon learned, much to our disbelief, that her condition worsened – she now had Lewy Body Dementia, a condition wherein protein deposits develop in nerve cells involved in thinking, memory and movement. For the next few years, Amma was bedridden and had to be constantly supervised.
My sister and I, both having successful careers in Australia and Delhi respectively, took turns taking care of her at her home in Chennai.
She began losing her memory – unable to recognize close relatives at times, hallucinating, lacking in coordination and mistrusting her family.
The medication schedules, the discipline it called for, the time and emotional energy it needed, were all overwhelming.
Having to see a parent bedridden, fighting physical and mental battles, is arguably one of the most traumatic experiences one can have.
Her grandchildren witnessed the transformation their super-grandma was going through, distressed by the sight, feeling helpless.
The Caretaker’s Trauma
Helplessness. An emotion that would strike anyone watching their parents age. For us, it was much more profound as we watched her battle a disease we had little understanding of, fighting several battles every day of her remaining life, with no treatment to help her through it. While we dealt with our anger, frustration, regret, and every other emotion that could bring us down, Amma continued being her strong, spirited, tough and inspiring self to keep us going.
The eventuality of her death stared us in our face. We were overcome with anger, regret, and perhaps also relief.
There was nothing we did not try. I registered her for clinical trials for Parkinson’s drug research, but there was none in India. We were left in the lurch as none of the limited treatments she was given seemed to be working, and if at all, worsened the side effects and symptoms. All we could do now was provide the best possible care, be at her side at all times, and provide as much comfort and love as she was in a position to accept. Watching her smile, prepared for the inevitable, was never easy. I would sit beside her, trying to fight back tears, consoling her while I was really consoling myself.
The memory of the last five years of her life is not easy to live with. It was traumatic, agonizing, and brings with it, feelings of guilt and regret. I think of her initial years as a mother, to my sister and I, what she gave up for us, how she made us what we are today, and how she inspired us to be the strong women we turned out to be.
And then I think of her final years, and wonder why. Why should a remarkable woman like her endure this pain? Why were we so helpless, that we could not do for her in her final years, what she did for us all our lives? It is a burden we continue to carry, and perhaps will never be quite rid of it.
Talk, Build Communities, Offer Support
As someone who has seen her mother suffer because of Parkinson’s Disease through the years, I fear, is it genetic? Does my sister or do I have the risk of being afflicted with the disease? The more I read about it, the more I realize that there is not enough awareness about it.
It is not confirmed whether it is hereditary, there is no assured treatment or cure for it, and there are not enough conversations around it.
Meanwhile, we can help remove the stigma, the mystery and the myths surrounding the disease by initiating dialogue, by sharing information, and thereby helping those who are as clueless as we first were. As I write this, I feel a pang of guilt and sadness. Could I have prevented it? Could I have helped her better? I may never really know. But I do know that watching a close one with Parkinson’s and dementia can never be an easy experience, and should not be devoid of adequate physical and emotional support, the right information and timely treatment.
The experience brought me closer to my mother, and was a blatant reminder of the fragility of life. Her lessons of humility, selflessness, patience and empathy that she taught us through her actions all our lives are what drove us to provide unhindered care for her, and survive the emotional upheavals. In retrospect, it was my mother in fact who helped us care for her in her final years.
(The author is a healthcare and science communications professional living in Delhi and can be found on Twitter @bgiddu )
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