My involvement in dementia care support: an explanation

Persons of various profiles often contact me for input and help related to dementia care, and this sometimes leads to lengthy discussions about what I do or don’t do. So I decided to document the nature of my involvement in dementia care for ready reference.

My personal situation has changed since I wrote this post. Also, the time and effort that I spend providing support has increased significantly, so I have re-evaluated which activities are most effective for me to achieve my objective of supporting dementia caregivers in India. For my updated description about the work I do, please use this link: The dementia care work I do

Summary: Simply put, I see myself as a dementia caregiver and as a resource person on dementia care who is available to other caregivers and to persons concerned about caregivers. I am always available to family caregivers to listen to them, to provide them information, and to share caregiving tips. I learn from all such interactions. I work independently, taking up small, self-imposed projects, and after a lot of thought, I have now decided not to affiliate myself with any organization (this is because of my personality quirks). I provide my ideas and information, without discrimination, to anyone who approaches me, subject to my time and energy, but I do not partner with anybody for anything. I am not a dementia care expert or a social change agent or a mover/ shaker, and I do not participate in any lobbying or such major work.

If you are a dementia home caregiver looking for information or help, you can just skip this post and contact me instead. I’ll do my best to help (though whether that will actually help I can’t say 🙂 )

To continue my explanation of the summary paragraph above, let me first recap my personal background.

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.”

Read the full post here