this month, a year ago

Last year, I blogged daily through the month of January, and I always felt I had a lot to share. This year, as I go through this a-blog-a-day month, I find myself in a very different frame of mind. More mellow, with less to say…

A few posts ago, I mentioned how much has changed in my mother’s state in the last year. As dramatic, as important, has been the shift in my perception and attitude. Last year, around this time – give or take a month or two – I was busy sorting out my approach to my mother’s challenging behaviors. She would have mood swings, she would say things that hurt, she would swing dramatically between sweet coöperation and gentle behavior, and angry, frustrated words and actions. Thinking and blogging and reading – these helped me explore what could be happening and how to handle it.

Around this time last year, my acceptance of my mother’s dementia was still shaky – I had to keep reinforcing it through talking and blogging and reading. I knew what they said — this is not what she is, this is the disease – but it was difficult to remember it. And even if I did remember it, it did not always help me handle it. I was building and refining my toolkit of handling dementia-induced challenging behaviors, and what worked one day did not always work the next day. A perpetual sense of overwhelm was always there.

My acceptance of the reality was tightly interwoven with a natural tendency for denial, and while one part of my mind kept repeated all I had read, another part kept saying, what if she is just being stubborn?What if, at least a few of the times, she is pretending memory loss, just because it is convenient? I would push away the thoughts, but yes, they were ever-present under the substrata, ready to become full-blown if I was not careful.

Now, there is no scope of not accepting her disease.

At a recent support group meeting, a caregiver whose mother moved from a mid-stage dementia to last-stage, just like my mother, expressed it very well. After hearing many caregivers talk of the problems of challenging behavior, she said, “My mother is now like a six-month old baby. Some months ago, like all of you, I felt anger and irritation and resentment, I would get frustrated and shout and be impatient. But now, looking at her, there is only love.”

The role of blogging in sorting out my current thoughts and feeling at peace with the current situation is more limited. But even today, there is stuff I can learn by seeing what I did right and what I did wrong in the past, and I also need to face the fact that this late-stage dementia will present a different set of decisions and heart-aches, and perhaps I can prepare for them. From tomorrow, I will use my daily blogging slot for these explorations.

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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.

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