“The Indian Caregiver’s Corner” :
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.
....."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."