Summary post for the Jan 2011 blogfest

Having driven myself crazy trying to locate something in my own blog, I finally decided to create this summary post to give a quick reference point for all 31 posts I made this January. Here goes:

Jan 1: A new year, and this begins my month-long blog-a-day : Declaring my intent to blog through every day of January 2011

Jan 2:Day 2 and warming up to the blogging: How people, because of their ignorance about dementia, may be inadvertently hurting dementia patients and their family, and comparing awareness of dementia with other medical problems

Jan 3: Ignorance is not bliss… : Sharing memories of how persons, ignorant about dementia, have repeatedly hurt my mother by their insensitive and presumptuous remarks, and dismissed my explanations because they projected their own needs on my mother

Jan 4: Enjoying fun time with my mother : How I have found that my mother and I can enjoy many activities together, such as playing games and telling stories, even though she cannot really remember rules of games or follow a story.

Jan 5: The unexpected quality of openness : Having fun time with my mother resulted in our being relaxed with each other and her being able to open up more about her fears and problems

Jan 6: Being the Wind, being the Sun: Meandering thoughts about the years, my mistakes, my opening up, and learning. A decision to look into the past to see those mistakes and see how things could have been different if I had understood dementia earlier. The past is over for me, but others are still on that caregiving journey…

Jan 7: Pattern spotting : Explaining my belief that the tendency to fit every behavior into a rational model (that attributes intention) causes a lot of pain if the person behaving oddly has dementia; we see stubbornness and meanness where the real reason for the behavior is possibly confusion and disorientation. Sharing anecdotes that could be interpreted in alternate ways if I’d known of her dementia

Jan 8: Hints and misses : Things are always clearer in hindsight. Looking back to see how some incidents in the past (before her diagnosis) were indicative of dementia

Jan 9: Learning from our experiences : Explaining why I have decided to share, in the following blog entries, the progression of my mother’s dementia, and how it changed her life and mine.  What follows over the next few days may not be pretty.

Jan 10: Beginning to understand the reality of “memory loss” : How it started becoming obvious to me that “memory loss” was not just forgetting where you placed a key; it meant you couldn’t read TV timetables or make out whether it was morning or evening: anecdotes shared.

Jan 11: Murderers, thieves, and an old woman amidst them : My mother’s confusion and disorientation created many difficult situations for us. She was scared and unhappy, and I was hurt by her accusations and clueless on how to handle suspicions.

Jan 12: She doesn’t cook for me : Describing the difficult years of care, of being accused of neglect by my mother because she forgot things, of embarrassment I faced, and criticism

Jan 13: Hurting herself without meaning to : Incidents recalled when she exposed herself to cold weather or hot, skipped her medicines, and so on: all without wanting to hurt herself, but too confused because of her dementia

Jan 14: A common loneliness…: Looking back at those difficult years, trying to understand how lonely and insecure she must have been, how I did not understand, how I lacked ways to reach her. I, too, was overwhelmed by her constant suspiciousness and fault-finding and repetitive behavior

Jan 15: Care for everyone but a dementia patient… : Beginning to describe how I tried to adjust my life to care for her. How dementia onset is so insidious that one does not realize one is caring for a patient, and there is no guidance on how to handle it. I did not know I had embarked on a long caregiving journey…

Jan 16: Paring down to essentials : Continuing my description of how I had to keep shaping my life to cope with my mother’s continuously increasing memory loss and disorientation, and the consequent demands and accusations and insecurities. How people around me did not understand or support, and I had to keep cutting out chunks of my life

Jan 17: Reshaping career and identity : As my mother’s dementia grew, the impact started affecting even my ability to continue with professional commitments, and major adjustments were required

Jan 18: A new place, a new start : Describing the move to another city, how it was difficult for her to accept, and how I tried to gear the new apartment in the new city to exactly fit what my mother needed

Jan 19: The turning point, and becoming proactive : Sometimes, there are no simple solutions.  Describing how, when some persons close to us just would not understand dementia and kept hurting my mother by their comments, I had to take a number of drastic steps to give her a space that was safe. And how she finally started turning around and relaxing in this space I finally managed to create for her.

Jan 20: Not Alzheimer’s or Parkinson’s? Then why’s there a problem? : People are strangely reluctant to accept that someone could have a genuine problem if they have not heard of it.

Jan 21: On diagnosis, on doctors who may not know or care : Sharing my distress at how poor awareness of dementia is even within the medical community. How doctors in emergency services and in other specialties dismiss my warning that my mother has dementia.

Jan 22: Our first consultation with a specialist : Beginning a set of entries on my mother’s medical problems and our visits to neurologists. Here, I describe the fall that marked the beginning of my mother’s problems, her deterioration, and our first consultation with a specialist who was a good shrugger and explained nothing.

Jan 23: When the specialist laughed at her : Continuing the description of our attempts to find out what the problem was; this second specialist was one who wouldn’t bother to look at her MRI and who laughed at her.

Jan 24: Finally, some clarity about the diagnosis: The third specialist gives us a diagnosis, and tells us what to expect, but I could have done with more input on the “care” aspect

Jan 25: Echoes across caregivers, touching lives : I talk of my commitment to share multiple caregiver experiences through my website, and share my experiences of talking to other caregivers; there are commonalities we all share. Yet many caregivers are unable to speak of our problems, even under the cover of anonymity, and instead carry the hurt inside them for years. Links to available interviews.

Jan 26: A sense of loss : When a dementia patient loses his/ her memories, we suffer not just because we see our loved one suffering; we, too, lose our shared memories and our shared past. For spouses of patients, this is especially heartbreaking.

Jan 27: Understanding, believing, denying: On dementia awareness, and why just saying “memory loss” is not enough; people do not get a measure of the horror of dementia with that innocuous phrase. And shared anecdotal evidence of how even persons, even medical persons, who theoretically accept dementia as being caused by a medical condition are not emotionally convinced of this.

Jan 28:Over years of caregiving…: A rambling of how over a decade of caregiving has changed, or hasn’t changed me. I talk of the shifting profile of my work, my social life, my approach to life, and yet some changes are not deep enough

Jan 29:Past tense and kadhi pakodi : How someone thought my mother was dead because I often use the past tense to describe her likes and dislikes. Tracing her fondness of kadhi pakodi over the years to show what has made me inadvertently switch to the past tense. We all change over the years…

Jan 30: My mother, a collage of my memories : A nostalgic piece about my mother, her childhood, my childhood, a jumble of memories, some shifts in impressions as I re-examine things with adult eyes. Some scanned memories, some tears that make me stop writing.

Jan 31: Phew! A month-load of blogs done; time to pause to breathe and have dark chocolate : Blog marking end of 31-day blog fest and over 51,000 words, and declaring I’m off to have dark chocolate and pamper myself by doing weird stuff.

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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.

One Response to Summary post for the Jan 2011 blogfest

  1. Jayashree Prasad says:

    Nice post! Nicely summarised! Feel like reading all the posts now!

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