Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

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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.

2 Responses to Sharing my personal experiences and thoughts on youtube

  1. Rummuser says:

    WOW!

    I reiterate what I wrote in the group mail. There is nothing more, less or different to be done by you.

  2. Shashie says:

    God bless

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