a paradigm shift by moving beyond concepts

I mentioned yesterday that my effectiveness as a caregiver improved and my life became less stressful once I moved from a role of ‘doing things right’ to one where I became an informed and involved caregiver.

It seems obvious, in hindsight, that caregivers should understand how dementia affects a person to become effective and creative in their role.

But I experienced an even bigger shift when moved beyond book-knowledge  and allowed myself to soak the concepts at an emotional level. The real benefit came when I extended my understanding beyond the dry theory level to a place deep into the heart.

Once I had read enough about dementia, I tried to understand what my mother felt – not in a dry, academic way, but by emotionally placing myself in her position. I let myself feel the emotional vulnerability of someone who wakes up and cannot remember where she is, or where the bathroom is. Someone who, someone is talking to her, forgets who that person is, and cannot decipher the words being said. Someone who senses the anger and irritation in a caregiver’s voice, but has no idea why the person is angry. Someone with a memory that had such huge gaps that even confabulation fails to give it a (false) continuity.

Just a few such experiments changed my perception of the situation. I saw how unreasonable and irrational I must appear to her when I expected her to remember things, or acted irritated when she repeated herself. I saw how the space around her affected her, and how minor changes could make a major difference to her.

The shift in my thinking was frightening at first – who wants to feel helpless, after all?

But over a few weeks, it changed the way I communicated with her — not merely in the words I used or how fast I spoke or whether I made eye-contact, but also in the underlying emotion I conveyed. It was no longer about ‘acting’ or making an effort.

My deeper understanding also meant that when she seemed angry or upset, I saw the fear and uncertainty and helplessness behind her anger, and could try to address that.

Books and articles on caregiving often talk of “it’s the disease” – understanding this concept helps. Tools help–how to make eye-contact, keep sentences short, and so on. Then there are tips to remember–how to reduce the probability of wandering, and so on.

But doing a few exchange-self-for-her types of experiment make the understanding so deep that every interaction with the patient is naturally more sensitive and suitable, tuned to what the patient needs.


More blog entries on caregiver role and identity are available here: Caregiver Role.

Resource page to prepare for the caregiver role is available here: Understand the caregiver’s role


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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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