Moving forward as a caregiver, accepting new realities

I use this blog as a means of introspection, mainly with respect to my caregiving role and its impact on my choices and attitude. As January draws to its end, so does my month-long one-blog-a-day exercise it is time for me to consolidate my thoughts and get ready for the year stretched in front of me.

A number of my blogs so far have described the current status, and examined the past to see what  I did, and what in hindsight), I would do differently if life pressed rewind. And it now makes sense to see what lies ahead to incorporate all I discovered about myself into my future.

One lesson I have learned is that there are no easy answers for what is right or wrong, but being better informed about the various option, and their pros and cons, will allow me to make choices I remain comfortable with, even in hindsight. So yes, I will read up more on topics that are relevant now.

Dementia end-stage, for example. About two years ago, when I began collating material on caregiving, some of the booklets I downloaded were about end-of-life decisions and late-stage care and  put them aside with a sticky saying, “later.” The sticky has been consigned to the dustbin now. I need to understand these issues now, as my mother is in stage 7 of her dementia. (Here, btw, are two of the documents I am studying right now: End-of-life decisions and late-stage care )

I had also bought a number of books and CDs on home nursing; again, there were sections I didn’t read because they pertained to caring fro a totally bed-ridden patient. I have been going through those sections carefully now.

As I educate myself, I can see that I may soon face  some tough decisions. In a lot of the literature I encounter, this stage of caregiving is handled in old-age homes and specialized facilities, where more specialized knowledge is available. Also, many countries have the concept of advanced directives, and caregivers (relatives or professionals) are usually well-informed about the criteria the patient had specified earlier. My situation (and the situation of peers in India) is different. While I am aware of my mother’s choice in some aspects (such as, she wanted to donate her body for research), in others I have to judge her preference based on what I know of her past.

One of my concerns is understanding what “quality of life” constitutes to my mother, so that I can keep that in mind while making decisions. The definition of quality of life differs from person to person, and also depends on factors like age and state of health, such as the stage of various diseases. What may have been important yesterday for her may no longer matter now, and vice versa.

A month-and-a-half ago, I had a neuropsychiatrist assess my mother. After talking to her for a while, and examining her, he gave me several tips on how to look after her. At one point, he said, “You don’t have to restrict her diet any more. Give her whatever she likes to eat, if she can digest it.” And it occurred to me that he was saying, the benefit from the pleasure she would get out of a food she likes clearly outweighs the long-term harm the food may do…..

I realized then that I should re-examine earlier decisions to check their suitability for my mother’s new reality. I have already made changes to match her current needs, but I plan to go about this review systematically, to make sure I haven’t missed something that would matter to her.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal 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. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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