A personal note…

My mother has dementia, as do so many others.

In hindsight, I’d say the dementia began affecting her behavior and memory around 1995. She hid it well (many patients do so.) But as the days passed, it became obvious that she needed help.  Initially, it was for errands like paying bills, then she needed help with her bank statements. She stopped driving, and needed support while walking. Then began her disorientation. She would sit out in the Delhi summer sun for hours, and end up dehydrated. She would forget to wear woolens in the peak of Delhi winter, and fall ill again.

And I got drawn into her life, one episode at a time. As the frequency of episodes increased, I redefined my career’s intensity to get more time to protect her from harming herself. As her dependence increased, it became difficult to leave her alone. Friends dropped away because while they planned outings, I rushed back home to look after my mother. Dementia changed the map of her life, and mine, as I shaped my life around hers.

Years rolled by. Her confusion became obvious to those at home, but she often managed quasi-normal behavior in short social situations. She complained bitterly to outsiders and relatives, based on ill-remembered facts. After a meal eaten with relish, she would tell visitors that I had not given her enough food. People assumed my explanations about her dementia were excuses for stark neglect.

In December 2007, I reached my tipping point when an elderly gentleman, a close relative, claimed I was torturing my mother. He used the word: murderer. The incident shook me up. Hardly anyone sympathized or supported; everyone, it seemed, had his or her ideas on what I should be doing for my mother, without having bothered to understand the nature of her illness. Turned out no one really understood what dementia was. I felt isolated, accused, helpless. I realized how desperately I needed to meet people who understood what dementia was, and the problems of caregiving.

Since then, I have studied a lot on dementia and caregiving. I now understand how important knowledge and tools are to compassionately handle caregiving. I know the importance of community, and am now part of a support group. I have met doctors, participated in conferences, and attended support group meetings. I talk about my experiences frankly, sharing both successes and mistakes, and conduct awareness programs whenever I can.  I share tips on caregiving. I have enrolled in ARDSI Bangalore.

Looking after someone who is losing herself a memory strand at a time is a moving experience. It has forced me to re-examine my own premises on ego and thought and memory. My mother is now completely bed-ridden, unable to turn by herself, and unable to talk. Every day teaches me something about dementia, and about caring. I occasionally blog about my experiences and insights.

The pages in this section are intended for those whose lives are wrapped around dementia patients. The perspective I offer while presenting what I know is that of a caregiver. We need to understand each other and spread the awareness, so that dementia patients and their caregivers can live with respect and dignity, and remain productive as long as possible. This is not a medical site. It is primarily a resource site aimed at caregivers. I am in Bangalore, India, and so many of the links I give are for India.