A personal experience of the Caregiver's Role from India.

“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India. 

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

"My involvement in dementia care support: an explanation", by Swapna Kishore on Swapna Writes Blog, January 30, 2012.

"I have been a caregiver for well over a decade. In the beginning I didn’t even know I was caregiving, and then I moved through an overwhelming stage where I had to make major changes and compromises in life, and I have finally reached the caregiving stage where I am now– stable, informed, and at peace with my caregiver role. 

In terms of my emotional position, over these last fourteen years I moved from “what is happening” to “why is this happening to me” to “why don’t people understand, I wish I could shake them into understanding” to “people just won’t understand” and “this can’t be happening to me”.

But then things improved, and some years ago, I moved to a phase where I began to think, “no one else should have to go through this”, and then “someone has to do something about it” to “let me talk about it myself” and finally, for these last two years, I am at: “let me do what I can do about it.”

"Currently, my mother is bedridden and fully dependent, and this sets boundaries on my choices and life. My caregiving role occupies bulk of the day when my mother’s attendant is not there or my mother is unwell, but when “all is well”, caregiving is minimal and my day is free for other activities within the overall constraints I operate in (low mobility, low social interactions). I use my available time and energy mainly to support the “cause” of dementia care in my own way.

LINK: http://swapnawrites.wordpress.com/2012/01/30/my-involvement-in-dementia-care-support-an-explanation/

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"Forcing caregivers into a one-dimensional care role", by Swapna Kishore on Swapna Writes Blog, January 27, 2012.

....."I don’t think the people who speak like this realize they are being intrusive or insulting; they are so engrossed in their need to see the right thing done that they assume the mantle of representing my mother and consider themselves God-appointed officials responsible for ensuring her wellbeing. 

They assume that any activity I do away from my mother detracts from her welfare; it constitutes downright neglect, or at least shows a gap in my love and duty, and therefore they have no qualms about reminding me what I must do."

....."Dementia care is an overwhelming role, and yes, it subsumes many aspects of the caregiver’s life, which often has to be completedly redesigned around it. But once there is a stable care arrangement, caregivers may be able to balance the care with other roles, responsibilities, interests and hobbies and live a more wholesome life. Such comments by outsiders place pressure on caregivers and take away that small sense of getting-away that they can have when they are doing other things. Such comments serve to box in caregivers into a confined space."
......

LINK: http://swapnawrites.wordpress.com/2012/01/27/forcing-caregivers-into-a-one-dimensional-care-role/

Alzheimer's Disease in India :

Thank you for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your mother feel comfortable through the disease.

Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.

So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.