Over years of caregiving…

Time for self-centeredness. Today is about I, me, myself…

I’ve often written about how I have tried to care for my mother, made mistakes at times, succeeded at times, made changes in my attitudes and in the environment around her and so on. I’ve talked about my involvement in dementia awareness and helping caregivers and all that.

Today, I’m talking about how (and if) these last several years have changed me. I’m looking back at the journey I started without knowing twelve years ago, then began resenting because it was a can’t-get-off-this-ride journey, and have finally slumped comfortably into (for the time being).
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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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love, without the trapping of a gift

A very interesting part of sharing experiences through blogging is that I get to connect with other caregivers, many of whom I would never have met otherwise.  On one of my recent blog posts, for example, I got a comment from Lori, who blogs about her own experiences as a caregiver at Alzheimer’s Speaks, and, while going through that blog, I found my way to a few other interesting blogs, such as the blog of Laura Bramly. They have recently been sharing their perspective on giving gifts for dementia patients.

Reading their blogs made me think of how my own gift-giving habits have changed over the years, with respect to my mother.

When I was young and in school, I would save my pocket money to buy a gift for my mother’s birthday. The gift was always a cotton sari that I would choose myself, and often it cost me the pocket-money of two or three months. I used to feel very great when she wore the sari I had presented to her (and told people that the sari was a gift from her daughter).

Once I began earning, and was living away from home, the occasion for the gift-giving became my visits home. It was still saris, sometimes more than one, handpicked to match her tastes. But sometimes, instead of a sari, I would buy her an embroidered shawl, or a special type of handbag.
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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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