Dementia and caregiving: More material in Hindi

Six years ago, I started sharing my caregiving experiences online as a form of catharsis, but this soon morphed into taking active steps to spread awareness about dementia and sharing suggestions/ information that could help dementia caregivers in India. The main reason I pushed myself to do what I could was the sheer paucity of material that Indian caregivers could relate to–material written assuming an Indian context.

Lack of material in Hindi was one of my concern areas. I tried involving others into creation of Hindi material, but no one stepped up to actually doing work (Alas, material doesn’t get created by clicking “like” on Facebook). I tried using paid translation services, but their translation was too literal and full of grammar and spelling mistakes and misleading phrases. So I began preparing material in Hindi myself–I created a full-fledged Hindi website on dementia and care, added a couple of Hindi videos to my youtube channel, and uploaded some Hindi stuff on my slideshare.net.

In the last few months, I put in another burst of work to prepare more material in Hindi. Here’s what I created:

A Hindi blog on dementia and care: While I’d initiated a Hindi blog a while ago, I had not been making posts in it. In May this year, I began posting more often on this blog, beginning with a topic I considered very important: Dementia names in Hindi डिमेंशिया को हिंदी में क्या कहते हैं. The blog now has 16 published posts, and I’m comfortable enough to now announce it here.

The blog is at डिमेंशिया (मनोभ्रंश) और सम्बंधित देखभाल.

A short, simple Hindi note on caregiving: This was the Hindi version of a simple caregiving note I’d written earlier. The Hindi note is uploaded on slideshare.net. You can view it at slideshare or in the player below.

Two Hindi videos on my personal experiences as a caregiver: One activity lying on my to-do list for a while was sharing my personal caregiving experiences in Hindi. I’d already created such videos in English. Talking about my personal caregiving experience is always difficult, and it took me a lot of rallying around to finally do the recording in Hindi. It was tough and draining. I finally selected out two segments of what I taped and uploaded it on my personal youtube channel at swapnawrites. (This is different from my other youtube channel, dementiacarenotes which contains videos with suggestions/ tips/ information for other caregivers, and is associated with my websites Dementia Care Notes/ Dementia Hindi).

Here’s the Hindi video where I share my mother’s dementia journey

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

Here’s the Hindi video where I share my personal experiences and observations as a dementia caregiver

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

So that’s what I’ve been doing to add my bit to Hindi material on dementia and caregiving. I am not fluent enough in other Indian languages to prepare material in them, and I hope others, fluent in various Indian languages, will consider sharing information and suggestions in them. I consider it a pity that most material in other Indian languages is material that was written for and by persons in countries other than India, because that material assumes a cultural context and level of support very different from what we face here, and hence not always practical for us here.

A request: If you are concerned about reaching audiences that read/ understand Hindi, please do check out the above. If you think they can be useful to others, please consider telling people about them, linking to them from your websites and blogs, and sharing them on social media. Thanks!

Links/ sites referred to in this post:

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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 Dementia and caregiving: More material in Hindi

  1. SS says:

    Namaste…
    I have written a short story based on my own experience. (given below) . I am giving it below.

    *** शीर्षक- स्पर्श/ट्यूनिंग/अनुकूलन ***
    {डिमेन्शिया/अल्ज़ाइमर्स मरीज़ों को समर्पित }
    [* विश्व अल्ज़ाइमर्स दिवस *21 सितम्बर पर विशेष *]

    कैसा लगता होगा उस प्रौढ़ को जो बूढ़ा होने से पहले ही कई साल बिस्तर पर पड़े रहने को मज़बूर हो जाये। काम करने की इच्छा तो हो, लेकिन हाथ-पैर सुचारु रूप से न चलें। बोलने की इच्छा हो, तो सही शब्द चयन नहीं हो पाता। स्वस्थ कानों से सुनाई सब कुछ दे रहा है लेकिन दिमाग़ प्रतिक्रिया नहीं दे पा रहा। स्वस्थ नैत्रों से दिखाई सब दे रहा लेकिन भ्रमित/क्षतिग्रस्त दिमाग़ कुछ और देख रहा हो।

    अपनों को तक भुला देने वाली बीमारी- “डिमेन्शिया (मतिभ्रम/मतिक्षय)” – के विचित्र लक्षणों से पीड़ित बिस्तर पर सात सालों से पड़ी ऐसी ही एक मरीज़ के पलंग के सिरहाने पर खड़ा एक बेटा उसके सिर पर अपना हाथ फेर रहा था। केवल उसी बेटे के साथ माँ की सही ट्यनिंग कुछ सालों से बनी हुई थी। उसी की नम्रता और नरम स्पर्श ही माँ को भला लगता था।बेटे को भी लगता था कि इससे ही माँ के साथ भावनाओं का पारस्परिक संप्रेषण हो पा रहा है। माँ ने अपनी मुट्ठी कस कर बेटे के हाथ को थाम रखा था। उनकी आँखें एक धार्मिक तस्वीर पर टिकी हुई सी…पथराई सी….किसी अनहोनी का ही संकेत दे रहीं थीं।

    तभी कक्ष में कुछ कड़क पुरुष स्वर गूंजे।”….ये होना चाहिए था…वो होना चाहिए था….ये नहीं किया….वो नहीं किया…..।” तमाम टिप्पणियों के चलते शिक्षित बहुयें अपने बच्चों को ट्यूशन सेन्टर भेजने को बाध्य कर रहीं थीं।एक दया दृष्टि दादी माँ पर डाल कर भारी मन से, कुछ बेमन से अपने भारी बस्ते उठा कर बच्चे चले ही गये ट्यूशन के लिये।

    वह बेटा अभी भी कभी अपनी माँ के सिर को सहलाकर, तो कभी स्पर्श से स्नेह बरसा रहा था। ….और फिर…कुछ ही पलों में तीन-चार बहुत लम्बी सी सांसों के साथ ही…सिर हिला हिलाकर किसी अपने को तलाश करती माँ की आँखें एकदम स्थिर हो गयीं।

    प्राण जा चुके थे। महिलाओं का, बाकी बेटों का पारस्परिक विलाप शुरू हो गया था।असहाय पति वहीं चहलकदमी कर रहे थे । बिना रोये….बिना एक आँसू बहाये वह बेटा माँ के सिर पर और चेहरे पर नरम हाथ फेर रहा था अभी भी पूरे विश्वास और आशा के साथ कि माँ की आँखों की पुतलियां अभी फिर से हिलेंगी…. उसे स्नेह से देखते हुये।

    –SS

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