beyond acceptance in caregiving–the journey through unknown territories

When I was twelve, a palm-reader told me most authoritatively that I would travel extensively through unknown lands after I crossed the age of forty. I believed him, especially when an expert astrologer said much the same thing based on my janampatri (birth-chart). Then, at forty, when I should have been planning my world tours, I got drawn into caregiving, and I said, well, so much so for all those predictions 🙂

Looking back, though, caregiving has been a journey through unknown lands, albeit of the internal kind and not quite the sort I expected. Like any adventure, it has involved unexpected situations and needed creativity and improvisations, and below I am sharing some of the landscapes I have viewed…

The landscape of parents, seen as a fellow-adult -Too many of my friends and colleagues stay ambivalent in their attitude towards their parents. Some dislike them, even hate them, and never get the time (or energy or will) to resolve this in time–it rankles inside them for years, and sometimes becomes a core that is so heavily shielded they don’t venture anywhere near it.  They react to their parents as if they were still children being imposed on, and move away physically/ emotionally as soon as possible, staying distant. The discomfort is palpable.

As a child I loved my mother, as I grew up, there were conflicts, and when I faced blocks inside me and traced them to some inadvertent statements or ‘mistakes’ she made, I was unsure what to think. As I moved to adult roles (professional work, spouse, mother), I found her hesitate to give me the space and respect I felt was due to me. I coped with this by arguing/ sulking/ acting distant. I was not happy, but saw no other way to handle it.

Then she developed dementia — it came slowly, and the changed behavior only increased my discomfort…till I realized that I needed to rethink everything about her, her past behavior, and her current behavior. The work of caregiving was onerous, and I needed to be at peace with her in all aspects to perform my role without stress.

I began, systematically, to examine her entire life as a third person would have.  I talked to people who knew her at various stages of her life, I dug out all her records to get an idea of the milestones of her life, and I read up general books about Indian history to understand what the turmoil of Partition would have meant to an orphaned, insecure girl living alone.  I understood how some of her dominant/ authoritative behavior was an extension of what made her survive those traumatic times. I saw the courage she must have shown, and felt admiration. Her adult behavior, seen by me as an adult (and not as a dominated daughter) gave me the perspective I needed to set aside any grievances (they seemed so minor seen in this new light). when I talked to friends later, I realized that very few (none) had even thought of re-examining their parents afresh–they were still too busy running away.

The benefits of this investment went beyond feeling peace and admiration for my mother; I also learned that there are always multiple perspectives to people if we are open about them. I don’t have to backpack through the Continent to meet new people and see things afresh–there are opportunities for newness everywhere.

The landscape of personality and memories Till I started examining stuff like this, I assumed I was an integrated person with distinct likes and dislikes. I never considered myself a loose collection of memories, so fickle that my self-perception changed every moment depending on which memories I made ‘current’ in my mind. I thought I was a rational thinker and observer of facts (at least most of the time), and never realized that even what I see is so heavily influenced by what I am ready to see/ want to see/ am in the mood to see.

Then I watched my mother, and how her persona would change totally depending on which memory thread of hers was acting funny. I saw how her definition of herself changed, and I started pondering on this whole business of memory and thought.  I observed how the “I” I changed at even the smallest stimulus, and was shocked. I don’t think I would have examined my internal processes had I continued full-force in a career and used remaining slivers of time for power vacations to exotic locations.

The results of the process I went through may not be visible to outsiders, they may not bump up any balance sheet bottom line, or be useful to make albums of photographs to show. But the benefit is far deeper. I now know more of myself, of what I am, and that I really am not “one person”. I know better how my mind works, how my moods form, and I am in a better position to bring about changes I want.

The lands beyond life Death is a taboo word for most people. It is negative, it shows defeat. If someone says, I am going to die, everyone around says, No, no, don’t speak like this, why are you negative?  People evade those who are dying–it depresses them. They evade the possibility or reality of their own death, or swing the other extreme and brood over it.  Modern society shies from death and, therefore, from the process of dying.

This is actually silly, because, as has been said before, life itself is a terminal condition. 🙂

As a caregiver of a dementia patient, one gets to see death piece by piece. A person dies a memory at a time, the progression is very obvious.

On one hand, it is possible to go through the months and years of caregiving without stepping back to look at dying and death in the face. I have known caregivers who refuse to accept death and dying gracefully or be at peace about this inevitability.I think they are missing out one of the greatest learning in life there. This is not to say I am reconciled to these profound stages of life, but to say that I am willing to do so. I have no negativity associated with facing related thoughts and concepts any more. As my mother deteriorates and needs help for more and more activities, I am learning, too, that dying is a continuous process of giving up control and ego a bit at a time, and to accept that the body’s ability is compromised, ask for help and move on.

Too often, I find people saying very proudly that they will be independent till the last minute, always do all their work, and so on. My mother was one such person some years ago.  Her progressive dependence must have hurt her like crazy (because, at some level, she does understand that she is dependent). My caregiving journey has taught me that tagging my sense of self or ego to such abilities is a recipe for pain. I hope someday to evolve a pleasure and sense of being which is not attached to the impermanent.

I have not fully mapped out the three inner landscapes I have written about; I am still exploring them, and parts of the terrain are intimidating and unnavigable. But I know they exist. I have begun mapping them and admiring their possibilities.

None of this would have happened if I wasn’t a caregiver. Life, ‘normal’ life with work, family, vacations, and the balancing of it all, is too busy with externalities to allow the cautious journey inside, and I feel blessed to have glimpsed the rich possibilities that are so near, but often forgotten.

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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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