For well over a decade, I was the primary caregiver for mother, a dementia patient. Across these years, my caregiver journey affected me deeply in many ways, making me very involved in dementia care as such.
Looking after someone who is losing herself a memory strand at a time is a moving experience. Years spent watching and trying to support my mother have forced me to re-examine my own premises on ego and thought and memory. Also, as a dementia caregiver, I have faced challenges on multiple fronts, mainly traceable to very poor dementia awareness all around me. My experience has taught me a lot. Even now, as I interact with many other caregivers of varied backgrounds, every day teaches me something about dementia and caregiving. I share whatever I know through various trainings, blogs, sites, and sessions with caregivers; I strongly believe that, for dementia patients to live with respect and dignity, we need more awareness about dementia and how to understand and help patients. Caregivers should be supported so that they can integrate care for the patients along with their other responsibilities and not get stressed.
To get a flavor of some of my experiences, check out this interview recorded in June 2009, when my mother was still alert (she subsequently became bedridden for some years, and then passed away). If the youtube player does not load, or you prefer watching it directly on youtube, click here to watch the film.
In hindsight, I’d say that my mother started facing problems around 1995, problems of disorientation, memory loss, and inability to do things. She hid it well (many patients do so.) But as the days passed, it became obvious that she needed help. Initially, she needed help for errands like paying bills, then she needed help with her bank statements. She stopped driving, and needed support while walking. Her disorientation started causing self-harming behavior. 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.
I got drawn into her life one episode at a time. As the frequency of alarming episodes increased, I redefined my professional life’s intensity to get more time to protect her from harming herself. It became difficult to leave her alone. Friends dropped away because while they planned outings, I had to rush back home to look after my mother. Dementia changed the map of her life, and mine, as I shaped my life around hers. I started figuring out how to communicate with her, calm her down, help her.
Problems continued, however, because though her confusion was obvious to those at home, 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, and egged her on for risky behavior (assuming she was capable and I was stopping her). Their comments on her inabilities sometimes were like taunts. She began settling down and becoming more peaceful once I stopped the visitors who were making her feel ashamed and incompetent, but that action also required major personal adjustments on my part and left me socially isolated.
For the last two-and-a-half years of her life, my mother was bedridden. She could not even turn by herself in bed, and was unable to talk. Caregiving for her in this state brought its own set of challenges and heartbreaks, and again, there were very few persons around me who could relate to this experience and understand it.
My years of caregiving have made me acutely aware of how important it is to spread awareness of dementia and appropriate caregiving techniques. Slowly, as I became more involved in dementia caregiver communities, I also began conducting awareness programs and caregiver training programs, and talked openly about my experiences in support groups and on my blog. I created websites for caregivers and made myself available to any caregiver who needs support.
For an ongoing account of my caregiving journey, and also my experiences as a volunteer trying to help dementia caregivers, check out my blog at http://swapnawrites.wordpress.com.
