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).

Warning: this is likely to be an incoherent  jumble with shifting moods…

In my twelve years of caregiving so far, there’ve been a total of ten nights when I’ve been away from the city my mother is in, nine of these nights spent visiting in-laws for highly overdue meet-your-grandson trips, one night out of city to receive a writing prize. Last vacation with hubby a three day trip to in-laws made over ten years ago….…but sometimes I’m not sure a vacation helps because the mind is what needs to be free. My mind still isn’t free enough, and a vacation may not help. Errr…what is a vacation?

Moved from software and quality consulting to becoming a writer….…and ended up using my software skills to help people I do volunteer work for. I love coding still; maybe I never was manager material :)

Still totally love reading. I have enjoyed all the reading I did while justifying to myself that it was needed to become a writer. Writers read, right? Even if they forget to write…Childrens’ books, I discovered, work better for me than literary serious works. Funnily, I found I love reading neuroscience type of stuff, too

Found I could write stories if I really tried, but also found that stories get difficult to write because I’m scared to put my protagonist in trouble; I want to get away from troubles. I love reading tense stories, but am scared imagining them. How can I knowingly throw my heroine into deep pits which I’d hate to be in myself?

Funnily, and this is really funny, I started writing to get away from the overwhelming sense of caregiving….….and ended up using writing to talk about caregiving. And writing about myself is surprisingly easy even though I am a shy person–talk of contradictions 🙂

Rediscovered happy memories from my childhood while also losing entire landscapes of my past when my mother lost her memories. Not sure it matters.

Amazed to see that I can change my mood by just changing what I choose to think about. Even more amazed to see how I always forget this when depressed

Was surprised to notice that my mother does know how to smile……and that I can smile back without feeling stupid and soppy about it. Even grownups can feel and express love. I’d forgotten that I loved her (well, at least many parts of her–could never love her much when she was criticizing me)

Was surprised to see that one doesn’t have to remain firm about boundaries. Boundaries can shift. Also found that sometimes one does have to create boundaries and take harsh decisions. There are unexpected tradeoffs and unexpected bonuses, and sometimes risks pay off

Found that people are often very different from what they appear if one goes deep enough and challenges their beliefs. Some people who seem rigid can change if one knows how to reach through to them……but for some people, I just can’t find ways to reach past their barriers. And if I cannot reach them, it makes sense to leave them aside. “Difficult people” are not always difficult, and “easygoing, gentle people” are not always easy-going and gentle. I guess I was naive earlier🙂

Lost bunches of friends, lost an identity, lost clusters of things I could do. Found some friends online, and a few in person. Cobbled together a somewhat more fluid identity, plenty of other things to do. It wasn’t too heart-breaking once I stopped resenting it.

Isolation isn’t the end of the world, I figured. One can emerge. It hurts, it makes one shrink, but it doesn’t kill. And it even makes one rethink and declutter friendships and connections with people. One can survive loneliness. And some people are lonely even in a crowd, they have told me.

Found I am no longer petrified at the thought of experimenting with things…frightened, definitely, but not paralysed. Turns out that life is quite precious and not worth wasting, and that this “do what you want” is not just a new-age slogan; it can be used in life. Still not sure I can do it, but I’m open to the possibility.

Realized I don’t have to remain shy just because I’ve always been labelled shy. Surprised to see I actually enjoy connecting to people and talking to them and listening to them. Not every day, no, but maybe once or twice a week? But I’m not as much of an introvert as I thought I was; I just need to be with people who have enough common interests.

Whether I know what my interests are is a different question🙂

Apparently my energy levels are high, if some people I interact with are to be believed :)

And while I’m sort of sharper about my priorities, I’ve also gotten around to a point where I think that seen on a large-enough time frame, very few things actually matter. None of us will be around a century from now. It’s all impermanent, and that’s actually quite relaxing in a twisted way; it takes off the pressure and allows me to become soft.

Nor is there anything too frightening about admitting mistakes…Apparently, everyone makes them, even extroverts who (apparently) do no wrong. And everyone is scared of something or the other inside them…it’s not just me who has that core of inadequacy

…On the other hand, in spite of all the above, I am still terrified at the moment when I just realize I’ve made a mistake. That sinking feeling, that sense of shame, the need to just “wake up” and be away from the world is so terrible. And that awful sense of inadequacy and being considered a fraud/ a bad person stays there like a stone in my stomach for a while, till I force myself to see that things are not that bad, that I didn’t mean to make a mistake, that I did the best I could. It takes a tortorous while (which could be a few minutes or a few days or even weeks) before I can face my mistake, and even longer before I can admit it to others and talk about it. I’ve spent a lifetime making mistakes, but this habit of visceral fear persists. And in caregiving, as in life, there are plenty of mistakes…

And most unnervingly, I’ve realized that for all that peace and love-love type of thinking I’ve managed to reach, it just takes a minor crisis to pull me out of gooey warm niceness and plunge me back into the dank old  habits of worry and fear and wanting to shrink back. Even imagining a crisis in detail can make me tizzy. I want someone to hug me and say, hey it wa sall a dream. Gone is be that nice soft feeling the above points give–big sigh! The way out of that pit is hard, indeed. 

…and on days when I feel shrunk and alone, when I know it is possible to lift myself out of it but totally lack the energy, when I wish someone else would hug me and bring me out of the slump I’m in, it seems to me that I have learnt nothing these last several years, for of what use is any insight  if it is so slow to kick in when things go wrong. And it takes me time to remind myself to be gentle with myself.  Staying peaceful is unfortunately a full-time mind-and-emotion-alert job😦

I did warn you that it was a jumble, right??

What can I say overall? Just this: I have no regrets, all said and done. It’s a different sort of adventure,  a different road traveled, and I’m still learning and growing. Still making mistakes, shrinking, trying to open up, and managing to do so sometimes.

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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 Over years of caregiving…

  1. Shashie says:

    Hi Swapna, your email directing me to this one hit the target as usual. At least five places you ave written EXACTLY where I find myself today. Am going to copy paste.

    1. Amazed to see that I can change my mood by just changing what I choose to think about. Even more amazed to see how I always forget this when depressed

    2. Found that people are often very different from what they appear if one goes deep enough and challenges their beliefs. Some people who seem rigid can change if one knows how to reach through to them……but for some people, I just can’t find ways to reach past their barriers. And if I cannot reach them, it makes sense to leave them aside. “Difficult people” are not always difficult, and “easygoing, gentle people” are not always easy-going and gentle. I guess I was naive earlier

    3. Isolation isn’t the end of the world, I figured. One can emerge. It hurts, it makes one shrink, but it doesn’t kill. And it even makes one rethink and declutter friendships and connections with people. One can survive loneliness.

    4. On days when I feel shrunk and alone, when I know it is possible to lift myself out of it but totally lack the energy, when I wish someone else would hug me and bring me out of the slump I’m in, it seems to me that I have learnt nothing these last several years, for of what use is any insight if it is so slow to kick in when things go wrong.

    and finally,

    5. Errr…what is a vacation?

    I actually don’t want a vacation because unwinding only to get back into the battle zone again is now pointless. I want to finish this for good and then will probably see life as a vacation (probably underscored with plenty of grief and guilt — who knows).

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