If I could do it all over again

A natural part of retrospection is wondering how things would have been different if, some years ago, I had known what I know now about dementia and caregiving. This is not an exercise in regret or guilt, more a way to deepen my understanding of the past, and also, perhaps, to help me answer questions when neo-caregivers ask me about the journey ahead of them.

Some things are obvious. I should have learned more about dementia and caregiving as soon as it became obvious that my future was intertwined with these. I should have built up my toolkit, connected with the community, shared my experiences and heard others share theirs. I should have been more patient, more loving, more understanding….

But one thing does not come out in this list, which is to me, more important. I am not sure a neo-caregiver, dreading the role, would even bother to hear me talk about this – but here it is: given a chance t do it all over again, I would have more fun-times with my mother.

There is so much one has to ensure as a caregiver, especially for a dementia patient. make sure the patient does not harm himself/ herself. Make sure that the patient is not agitated.  The patient must eat well enough to get the required nutrition, hygiene must be maintained, the patient must remain as active as possible, but not get agitated. It is a long list.

What gets missed out is the fun of it all.

See, normally people my age, busy in their careers and family, don’t spend that much time with their parents. There are family gatherings and festivals, sure, but often those are about food to be cooked and shared, or rituals, or seeing movies together. Often time is a squeeze, and there is a sense of crunching in as much as possible in the short time together. Even when relaxing, there is a hurry to relax in a time-effective, efficient way 🙂

Dementia slows down life, because it means decomposing activities into elements, speaking simply. Put-on expressions are not good enough; the patient can see below that face-mask.

And that is an opportunity to get in touch with the real person. What  I am. What my mother is. And that is what I missed on all these years, tense about not making mistakes.

Take simple games, for example. One of my concerns was that my mother retain as much of her cognitive ability as possible, so I was always looking for ways to make her play small games (I would select them with great care to match what she could do, so that she could experience joy and successes). I would spend hours talking to her to set the time and place, or jog memories of the past by showing albums (large pictures for easy identification of people, helpful labels on the side).

Yet, even as I did all this, I took months to realize that I could relax while doing this. That the disease  was progressive, and that I might as well enjoy what she can do instead of worry that it was less than what she did a week ago, or more than what she will be able to do a month later. I could have enjoyed the stories she made up to plug the gaps in her memories, seen the humor in them.

Time is precious, and it took me time to understand that it made sense to take it easy and have fun with her, laugh more, enjoy what she could do instead of mourn what she could not do. Humor while things happen, and not post-facto, while reminiscencing.

It is obvious that if a time machine took me to the past, I would be better informed,  effective, and efficient as a caregiver.

But more important, I would let myself enjoy and find fulfillment with her.

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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.

One Response to If I could do it all over again

  1. austere says:

    I’m borrowing your guts pls.

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