shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver 🙂 This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.

The next phase is what I can probably label as a functional caregiver. By this time, it was clear to me that some form of caregiving was required. I saw my role as someone who would run errands, and probably keep reminding her of things she forgot. The doctors had mentioned that her memory loss will increase, and though I did not articulate it as such to myself, I assumed it meant that instead of forgetting where she placed her keys once a week, she would forget it three times a day. Or something like that.  I did not even dream she would forget what one uses a toilet bowl for 🙂 

Like most people who become caregivers, I did not choose this role. The role was thrust upon me by my situation when I was unprepared and untrained, and like most caregivers, I squeezed this role amidst other roles I performed. This included bringing up my son, and trying to grow a business I had just started, in addition to my hobbies and my family life and health, and so on. I saw caregiving as a bundle of activities and responsibilities, not as the emotional journey.

Essentially, I became the ‘doer’ responsible for getting everything done right in this whole looking-after-Mother business. She was the receiver, the target. I wanted her to be well and happy, but I often saw her as someone who sabotaged my efforts by being distracted, disoriented, uncooperative, even stubborn and self-destructive.  At times, I felt I was trying to keep things okay despite her.

Affection and compassion were present, but not integral to caregiving activities. There was always this distance between us, and I was careful to remain balanced, reasonable, responsible. The good guy.

Finding myself increasingly exhausted, I realized I needed to plan better. Know better, too. And thus started my phase of being an informed and involved caregiver.  I began trained myself for the role I earlier assumed needed only instinct. I read books, talked to other caregivers, located more helpful doctors and talked to them, saw tapes, read posts in online support groups. I started understanding  how to handle difficult behavior and also why it happened, and that I could handle it creatively. Finaly, I knew this animal called caregiving that I was riding, and saw that it need not be so bad. It could even be fun at times.

I have now moved slightly beyond this role, too, because I have broken that rigid boundary where I was the rational doer. The work of caring continues to require (perhaps more than before) an intimidating mix of skills, and I continue to acquire additional skills, but my attention is more on her quality of life. And on the quality of my life, and what I can share with her.

Perhaps what I am attempting now is adding a component to caregiving:  companionship between differently-abled persons. Definitely, it is more emotionally satisfying than the earlier models I used, enriching in a way I had earlier not considered possible. It’s been quite a journey, this caregiving business, and there are probably miles to go 🙂


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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