Enjoying fun time with my mother

Here’s my mother’s favorite story: There were four young Brahmins who had spent years studying in an ashram, and finally their guru told them they were ready to go out into the world and use what he’d taught them. Use with caution, of course. And as they walked across the forest they saw the bones of a lion scattered on the grass, and decided to try out their skills on it, taking turns. And then, stuff happens.

This is a story from the Panchatantra. It has a moral. It has a lot of great graphic pictures in the large-print version of the story I have.

Have you heard the story? How many times?

Ever so often, I ask my mother whether she wants to hear it. If she is sleepy, or unwell, she shrugs or ignores me. If she is awake and happy, she nods her head with the sort of eagerness one expects in kids hearing their bedtime story. And I begin talking…

When I was narrating this story to her yesterday, I suddenly thought I could share the story about this story here, on the blog.

Around two-and-a-half years ago, I was close to caregiver burnout, unable to handle my mother’s deterioration and frustration and the never-endedness of it all. More out of desperation than anything, I decided to start including “fun” into the activity list of the day.  It seemed quite counter-intuitive a measure because in those days, all the hours were a struggle trying to help her do things she either could not do or did not see why she should do (like change clothes after soiling them). It was so joyless a life, so full of chores that the days seemed to stretch with frown-inducing work. To that mix, I added a wooden jigsaw, a toy of stacked rings, a couple of Panchatantra books, and a few other such foolish-looking nothing activities.

Of course she resisted in the beginning. “This is for kids,” she said. “What will,” “say?” But when she felt no one was watching, she’d pick up the colored plastic rings and look at them. Then I started leaving the things near her, or playing with them myself, without asking her to join. That’s how we do it for kids, too.

She began trying her hand at the games when she realized they were for fun, not “training”, not as a “test”, and not as some form of mockery. It was not easy for her.

Every day, she would work the same jigsaw, struggling at the same points, getting stuck, needing help. Sometimes, she even said, “I do this every day but I still can’t do it.” But she didn’t give up. It was a challenge, and she took it, so much so for those who say her willpower was poor. Would you or I take on a task we struggle with and fail at every day? I doubt I would….

And ah, the pleasure on her face when she managed to complete it!

She would also flip through the books. She had not been able to read for a while by then, her inability to figure out words or remember sentences coming in the way of meaningful reading. Nor were the books at home that easy to read. She was surrounded by stuff that was geared for the person she had been–someone into philosophy, capable of really serious reading.

We began reading the Panchatantra story together. That is, I would hold it out in front of her and read aloud slowly, my finger sliding under the words as I read them out. I’d watch her eyes, adjust my pace. I’d pause to point out the pictures, comment on them. She did not join in at first, only nodded.

Over weeks, she began participating more, reading with me or ahead of me, commenting on the pictures. It seemed that the story was enjoyable to her every day, which was surprising at first, because I’d got a bunch of books but never managed to get her to read more than four stories of the bunch. More than four stories was like an overload.

Over these two-and-a-half years we’ve gone over the peak where she was almost able to read the stories to where she is unable to make out the words again. She had started talking about the story; now she is silent again.

In the beginning, I thought reading the story with her would help her get back (at least a bit of) her reading skill, and in some way it did, but to a very small extent. I think I was coming from an assumption (unstated even to myself) that things improve with practice. After all when we teach children to read, they improve.

It took me a while to register that here, while there were improvements, there was also an overall decline. The improvements were temporary, small sparkles of happy moments I should not use for hope. That the only way to really enjoy this myself and have her enjoy it was just flowing with the activity, whether or not it was a “good day” or a “not so good day.”

In spite of  the regular play sessions, the decline did occur. First, she stopped reading. Then her eyes stopped following my finger. She looked bored. She shrugged off the story. And I changed my tack. Instead of trying to make her read the story, I began narrating the story. I stopped reading it myself. I used gestures, pictures, dramatic voices. The fun was back in the story.

It’s a nice story, you know.  It had the soft warmth of a familiar story, like a joke where we know the punch line and can laugh in time. A story she can hear and enjoy without tension.

I build in variety by changing the dialogs slightly every day. I switched from English to Hindi for narration, because I could add more interesting stuff in the language of her childhood and saw she connected better to it. My Hindi is quite good, but over the years it’s gotten so mixed up with English that it takes me time to remember the Hindi equivalents for many words…it has been fun purifying my Hindi to narrate the story better for my mother 🙂

I suspect that I enjoy the story as much as she does now. Maybe if you visit me, I can tell you this story.

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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.

13 Responses to Enjoying fun time with my mother

  1. Averil Gomes says:

    It takes courage and devotion and a whole lot of love. All the very best to you, your mum and the rest of your family for the year ahead… and I’m contemplating a visit.

  2. J V Rao says:

    Dear Swapna,

    Happy to see..Read…you back.
    More happy to see Mom still with you.

    In the usual ‘Busy’ days where most of the blogs that we read are somehow related to our professional world, your blogs are a Reality check and possitively inspiring.

    May God grant you the strength and stamina to continue to be a good care giver.

    Wish you a belated Happy and Prosperous 2011.
    Regards
    J V Rao

  3. Janet says:

    I agree with Averil. You continue to inspire through your writing, those who are bungling through this same situation, or may in the future have to deal with it. You are generous to share your story so tellingly! Thank you and my best wishes for 2011 to you and your family.

    Love
    Janet

  4. abha says:

    Swapna,
    Yours is a true loving of a daughter for her mother.This kind of care giving requires all of one’s resources and fortitude.
    Lucky is your mother to have a daughter like you.
    Warm wishes,
    Abha

  5. Lalitha Devarajan says:

    My dear Swapna

    It breaks my heart to read about mom. I am presently with Raghu. Just now I was telling Gayatri, my grand daughter about our days at Patna. Amma was a scholar! Among our circle of friends back in those days mom was the most learned.I used to look upon her with awe! Her knowledge was something beyond my comprehension in those days. She had a very warm corner in her heart for me and Radhika. It is heart-breaking to read about her present condition. I do not have enough words to tell you how sad I feel.God bless you Swapna! You are an amazing daughter!

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