Learning from our experiences…

Over the past few days, I  have forced myself to think about the far past of my mother’s situation, when there were hints I missed, and fears she hid by blustering through and raging, and the distance and the pain. It seems such a waste in this harsh light of hindsight; why am I forcing myself to look at it?

After all, it hurts to remember those things and write them out and expose them. So why?

The answer is simple: I may be at a safe place now, in relative peace, bridges repaired, connections forged, but there are so many others who face today problems similar to what I faced then…

…and if my writing could reach even a few of them, directly or through an awareness of others around them, the pain of looking back is worth it. At least what my mother went through, and I and the rest of the family, will not be an utter waste.

Mistakes are never intentional 🙂  . We behave in ways determined by our personalities and choices, but also depending on the overall knowledge around us, the society, the norms. We have definitions of who we are, and resist changing them. We have definitions of who others are and what they do or don’t and stuff like that..

I ended up as a caregiver. I was not performing a role I was equipped to perform. I had not grown up to become a caregiver. Not studied to be one. Not planned to be one.

I lived in a nuclear family. I studied to be an engineer, worked as a hardware engineer, then did my management post-graduation and switched to software. I married, had a child. All through this, it did not occur to me that my parents would age and need my help. I knew of this possibility in theory, but I hadn’t emotionally geared up for the fact that it would affect my life in a major way.

When my father fell ill a few times, there were emergencies and hospital trips–these were handled as individual, tense episodes that occurred and then got over. When he broke his hip and was bed-ridden, the situation was more challenging. We coped. With difficulty at times, and not always gracefully, but we handled it well enough. Satisfactorily.

But when my mother developed dementia, we did not even realize what was happening. It was very “boiled frog,” to use a management analogy.

I knew nothing about dementia caregiving, which is a marathon run, and very intense. I had no idea it would occupy over a decade of my life. I hadn’t considered making the major life adjustments it needed. Heck, I didn’t even know my mother had a problem. I was caregiving her before I knew what her problem was. I functioned for several years at a lag with the situation, reacting rather than planning, not even knowing planning was needed, or what to plan for or how.

My mother’s problems were visible enough for some years before we had a diagnosis. We did go to doctors during that time, but they shrugged us away–that’s another story for another day. What I’ve found in my re-examination of those days was that we missed many clues and we may not have missed them if we had known about dementia. She covered up her problems, too, and maybe she would not have done so if she hadn’t been bewildered and ashamed about them. (I’ve shared this in part in my blog entries of the last two days: Being the Wind, Being the Sun and  Pattern spotting and Hints and Misses.)

If I had been better informed, if all of us had been better informed, there would have been less pain. This is what spurs me on for spreading dementia awareness–I would like others to know in time. I want to feel that what we went through is not wasted.

I interact often with caregivers and hear them talk of their anger, their hurt.  Everyone I talked to has told me that the first time they heard of dementia was when they got the diagnosis. They had heard of diabetes, of heart problems, but not of dementia. I think the picture is changing now–or at least I hope so.

But dementia (or Alzheimer’s, whatever) is just a word for most people. The phrase “memory loss” does not convey to them anywhere close to the experience of what dementia means in real life for the patient and the family.  For that we need to hear the stories of people. Which is why I share mine, and try to share that of others through my site, Dementia Care Notes.

Awareness of dementia in India is very poor, and we need more stories available. (BTW, if you know anyone willing to share his/ her story of caring for a dementia patient, please contact me 🙂 )

A few weeks ago, I met this woman I’ll call Nayantara. She is a young (well, younger than me 🙂 woman, energetic and courageous, and has been caring for her father in spite of a lot of rough treatment she has received. She has enough family around her, but she gets no support from her family, quite the contrary.

When I told her what I was trying to do through my website, she quickly agreed to an interview so long as her name was not used, and some identifying details obscured. That is a common enough request, and I can so easily understand why it is needed.  She wanted her story shared; she knew it was important that people know the sort of things that happen, but she did not want it traced back to her.

As we were talking, I found an echo of some of the things she said in my own life. You can read her interview here: Father thought I wanted to kill him: a daughter talks of her father’s dementia.

What I found touching was that she was happy when she saw the interview published on my website; it was as if she’d got a voice, even if that voice used a pseudonym.

I am thinking of Nayantara today because I am trying to get the courage to share the next phase of my mother’s situation here–the uglier part, where there were several challenges and none of us coped well. There are reasons we did not cope well, but there need not have been…If I can get myself to share it, maybe it will not be an utter waste.

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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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