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.”

Currently, my mother is bedridden and fully dependent, and this sets boundaries on my choices and life. I use a major part of my available time and energy mainly to support the “cause” of dementia care in my own way.

Let me elaborate on what I do. [Note: All my work is self-selected and self-assigned.]

Most of the time I create information (documents) that could help caregivers or persons concerned about caregivers. I blog regularly on dementia care (my blog has over 150 posts). I maintain and keep adding to a comprehensive website for dementia caregivers in India (it has around 90 pages right now), create videos and downloadable presentations and documents. Whenever I can, I add caregiver interviews to my site. I do this because I believe we need more material directly suitable for Indian caregivers, with settings and incidents caregivers can relate to. I constantly evaluate what to do next, and pick up what best fits my perception of what people need and (equally importantly) my energy and enjoyment levels.

Because I am visible online, many persons approach me. These include caregivers, students, researchers, newspaper reporters, people planning to set up facilities, other volunteers, persons curious about dementia and care, and once-in-a-while persons cursing caregivers because they think caregivers look for excuses to evade their duty. This is how I handle these:

  • Family caregivers: I respond very promptly to caregivers who need support or have questions or want to know whether they are alone in what they are feeling. I aim to always remain available to family caregivers. I respond by email, and offer to discuss on phone if we can find a mutually convenient time. My usual response time is less than 24 hours, often within 12 hours. I am deeply concerned about dementia home care, and I belong to this caregiver community myself. I have sometimes spent hours talking to utter strangers, and made lasting friendships out of such queries.
  • Students, researchers, newspaper reporters: I am always willing to provide my experience and thoughts for their questionnaires, and I also direct interested persons to others who could help them. I respond to interview questions, and if someone wants to pick up my blog entry for their newsletter, we discuss that. My response time depends on the type of query, and shorter queries get much faster responses 🙂 Currently, three days is an outer limit, and responses are typically much faster.
  • Persons curious about dementia and its care: I enjoy “meeting” persons from diverse backgrounds who are even a teeny bit curious about anything related to dementia or its care. Though my response time depends on how elaborate the query is, I usually revert in less than 24 hours. If you have sent something more than 3 days ago, and not got my response, it means there was a glitch somewhere and you should write to me again.
  • Volunteers and wannabe entrepreneurs (persons supporting caregivers or wanting to create products and services for dementia care) : I am only too aware that we need more and more persons doing more and more things. I make myself available to anyone who approaches me for data or ideas. I share whatever I can and don’t hold back. I also give them comments on their ideas and documents (like business plans/ business models) if they want, and if I feel I can help. I am aware that many persons who want to do something to help dementia caregivers may lose steam midway and or face problems that make them give up; as I cannot foresee the future, I do not presume to assess the potential success of a new venture nor do I use my opinion as a basis to discriminate the way in which I try to help.
  • Persons cursing caregivers: Fortunately this is rare. Responding is tough because it is hard work to stay balanced and yet explain 😦 and the only reason I may respond is that staying silent may seem like an agreement. It may take me weeks to respond to a hostile mail…or I may not respond.

I also participate in online caregiver communities, where I remain active and participate approximately once daily, but not all day long.

I sometimes get invitations to conduct dementia awareness programs, conduct caregiver trainings, or facilitate workshops or support groups, and these give me an opportunity to connect with more caregivers. I always welcome such opportunities and take them up, if feasible.

What I do not do:

  • I do not maintain a database of good old age homes or agencies for attendants, and I do not recommend names of any such entities (though I may direct information seekers to other volunteers who maintain such lists).
  • I do not plan to get into providing services like trained attendants, respite care, etc.
  • I do not have any bricks-and-mortar support mechanism. I do not have an office where people can come to meet me. I do not have a space where I hold trainings or awareness classes. I do not plan to change this situation.
  • I have taken a decision not to join any enterprise. I will not partner or take up an official position for any existing or new venture. I do not sign petitions or lobby for anything. I do not understand the macro picture well enough to sign something saying the Govt. should spend X amount of money or attention for dementia (because attention spent in one thing is attention removed from another, and I am not an economist or policy maker).
  • I do not charge fees for anything I do, or for any document or artifact I create. I do not sell my dementia care work. (Hint: If you need a person with a “chaap” and an infrastructural backing, I’m not the right choice.)

My work approach and philosophy:

I work with intensity, trying to remain honest and productive, with full commitment to things I undertake, and with no explicit long-term commitment to the “cause” at large or to the future.

The fact is: I have no idea how long I will have the stamina or desire to continue in the dementia care support area, and I can only confirm my commitment to the here and now, not five months, one year, five years in the future.

Because I do not know what I will want to do, say, five months from now, I only take up work in units that can be made useful at very short notice. So if I am preparing a bunch of documents, I prepare in a sequence such that I can release them in phases and they will still be useful. I strive to use my current commitment to its maximum. Further, because of my short-term focus, I constantly re-evaluate my involvement and priorities. Direct help to family caregivers tops my priorities at any time. When interacting with volunteers and wannabe entrepreneurs, I lean more towards people who seem to be benefitting from our interactions, and who have more tangible plans.

My focus is to make life more manageable for dementia caregivers in India, not just with respect to caregiving but also fully recognizing that caregivers are not one-dimensional creatures; they play multiple roles and responsibilities. I am not into “dementia care support” because I believe that patients deserve a good deal, or that this is culture or duty and I am a custodian of values who is setting Indian society right. Quite the contrary 🙂 I work because I believe we can reduce the pain and hurt everyone goes through because of dementia and care–and that includes not just the patient but also the caregiver and the rest of the family.

I do not believe I know the best way (or even a better way) to give care. All I have is my experience and what I have heard from many caregivers and some volunteers, and I offer a consolidation of my knowledge, thoughts, and opinions to anyone who may benefit from them. I am constantly learning from the experiences and thoughts of others, and fine-tuning my understanding.

According to me, every patient, every family, every situation is unique and needs a tailored way forward, and the family is in the best position to decide what to do. I value anything I hear from any caregiver, and I consider being a good listener as the most important part of interacting with caregivers.

A word about motivation: I find motivation tricky to maintain. At times I feel helpless about how much needs to be done, and the big picture depresses me. Then I pull myself together and say, okay, I’ll just look at this one brick to lay today, this one document to make, this one video to plan, this one caregiver to talk to and encourage, or I’ll take a tiny break and get recharged. That’s doable, and I last out another day.

By focusing on the immediate future (and I may keep extending this for five years, ten years, twenty years, or I may opt out three months from now) and by knowing that I can opt out at short notice, I try to remain sane.

Why I wrote this note: In the last one year, I have ended up explaining this entire approach and philosophy to over half-a-dozen persons, so I thought I’d write it out so that next time I can refer people to this post instead. It makes me clearer, too 🙂 Also, people who see my blog and site and all that sometimes arrive at a very different picture of my energy levels and commitment and stuff; their disappointment doesn’t work well either for me or for them.

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

You can also see my related work-scope and work philosophy posts here:

The blog I refer to (with over 150 entries) is this one, that is: Swapna writes

The site I refer to is Dementia Care Notes

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

One Response to My involvement in dementia care support: an explanation

  1. Pingback: Day 31: the year’s target met, the blogfest completed « Swapna writes…

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