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.

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.”

Celebrations, isolation, withdrawal, and inabilities that creep up over years

For the last few weeks, I have been working on something that needed figuring out a lot of technical stuff, and today morning, finally, I managed to finish off that chunk of work. And as I sat back to breathe in deeply and try and feel happy about it, I thought of one major change that has happened over these last few years: I have fewer ways to celebrate, because I have moved to an isolated, work-from-home setting

I started working from home around twenty years ago, after my father fell ill a number of times and coordinating his care was tricky with full-time work outside home. My mother (she was okay then) could not handle that work along with looking after my five-year-old son, and so hubby and I re-arranged our professional lives to a freelancer mode with the base at home. Hubby’s work continued to include travel within and outside city, but I worked off a home-base and only took up assignments in Delhi (where we lived then).

I have always been an introvert, a non-socializer, a misfit in parties, but till that point I was used to working from a typical office. My initial assignments as a freelancer were mainly system studies and design, which required visiting client sites often, but I had the flexibility to arrange the dates and times and was therefore available to support my father when needed. But then the profile of assignments moved to writing reports or developing systems, and I was spending most part of most days at home. The Internet was in its infancy, and many people did not have emails or did not check them. Work-from-home was rare and considered an oddity, but I managed. I also had to go out often for meetings and presentations–and used long phone calls with clients and fellow-professionals for supplementing these and get work done, but my amount of communication and social/ professional contact kept reducing.

Over years of caregiving…

Time for self-centeredness. Today is about I, me, myself…

I’ve often written about how I have tried to care for my mother, made mistakes at times, succeeded at times, made changes in my attitudes and in the environment around her and so on. I’ve talked about my involvement in dementia awareness and helping caregivers and all that.

Today, I’m talking about how (and if) these last several years have changed me. I’m looking back at the journey I started without knowing twelve years ago, then began resenting because it was a can’t-get-off-this-ride journey, and have finally slumped comfortably into (for the time being).