The unexpected quality of openness

One of the loveliest parts of starting “fun” time with my mother was the way I began looking forward to that time slot with her. I didn’t have to be competent all the time, or keep trying to improve things. My need to “preserve and protect” my boundaries dissolved, too.

Strange how, after decades of establishing a boundary with the parents to define oneself as an individual, it is only when those boundaries dissolve that one finds  the best of oneself….

Care is often not seen as related to fun. I definitely did not think of “fun” for years. Oh, I would try to talk to my mother sometimes, but it didn’t quite work out. For one, I lacked the skill to orient with and feel comfortable with her view of reality. And another, I always had a agenda, even though I wasn’t aware of it myself, and that agenda was to make her accept her situation and improve.
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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…
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there and yet not there

Nowadays, my mother sleeps for most of the day, and the rest of the time, she looks sleepy. I have tried holding her hand and talking to her, she smiles lazily, sometimes utters a word or phrase, and then closes her eyes.  If I ask her whether she is sleepy, she nods her head.

This is not a sudden change, but it took me a while to register this new ‘default’ state. I realized yesterday that we had not played games with her for a number of days, because whenever I suggest a ‘game’, she shakes her head. I have managed to make her count my fingers, or identify colors and objects, but even that seems to tire her, and so I have to stop after a short while.

A year ago, she would do small jigsaws, place rings on a rod, and play games where  she recognized or matched colored pictures. She saw albums and commented on them. We used picture charts. She even read a few phrases from a large-print Panchatantra book.  She could read aloud letters from her grandson (written in simple sentences, printed out in large font). She practiced her signature every day, and sometimes managed it almost correctly.
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ups and downs as part of caregiving fun

At the toy shop, as I looked around for board games I could play with my mother, the shopkeeper was most helpful. Chess? Scrabble? Err…no. Ludo…hmmm… I couldn’t figure how I’d explain the rules to my mother…so, thank you, but no.

The game had to be simple enough in terms of its rules and visually, and it should work well with two players. Finally, I got us a Snake and Ladders.

My misgivings began soon after I left the shop. Snakes and Ladders is not exactly a high-skill game (a plus), and progress depends on luck (could that be a minus?). I could end up winning, or I would have to be very careful not to win. She may find the sinuous snakes alarming if her token had to slide down to a lower square.
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An hour at a time: Fulfilling moments in dementia caregiving

A day at a time, an hour at a time, one task at a time–that sounds like a mantra for living in the present moment. It is also the mantra for handling caregiving. And even more, a mantra for remembering how caregiving can enrich by finding in the span of the day one hour, even one hour, of an activity that can be fun.

A few months ago, I thought ‘playing’ was for kids, but then I realized playing is also a way of improving (or at least retaining) cognitive skills, so I got my mother a few games. Simple ones, colorful ones.

My aim was to use games to instruct her and help her retain her cognitive abilities. Each time she fumbled over a wrong choice, or took “too much” time, I felt impatient. When, on a particular day, she was unable to finish a game she had managed earlier, I felt disheartened, and so did she. When a deterioration continued across days, I despaired.

But one day, instead of focusing on her progress, I watched her expression–the intense attempt at concentration, the fleeting smile of delight, the puzzlement–and that day, I changed my focus of this game-playing activity. I began seeing it as something that could help her feel cheerful and good about herself, and well, why not? She has enough dealt out to her by life that works the other way. A day for her is full of so many small failures–failures to remember words, phrases, failures to ‘tell’ in time and cause smelly accidents, failures to even remember her name. If she can smile because she can pieces together a simple jigsaw, that was great.

Over the last few months, I have slowly got her a set of games she likes. It amazes and delights me to see how she manages to enjoy the same game day after day, with that same sense of wide-eyed wonder.

Like today. We used a jar of play-doh and shape-cutters.We made stars, and flowers and butterflies and elephants, and I found myself enjoying them alongside her, not just watching her. I don’t think I have shared any fun activity with her for years now. Strange it needed her to get dementia for us to be together for one judgment-free relaxed hour a day.

Some activities can be fun, you know, if you don’t get too serious about winning and being correct and improving and learning. They can be full of laughter that bubbles inside the heart, and colors. Not every day, maybe. Not every activity. But some, sometimes.  And that is a great starting point.

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