Platitudes, shame-and-blame games, and avoidance of introspection on complex causes

I’m concerned at the way some persons associated with the field of elder/ dementia care spout platitudes and stereotypical blame/ judgments in public and social media forums. I know these people mean well, but from what I understand, such statements don’t convey anything new or useful. Worse, they may harm the situation, for example, they alienate many family caregivers who feel defensive and may hesitate to ask for information and help, assuming they will not be understood and will just be criticized as persons who lack sufficient love, duty, or culture.

I hope my statements in this blog don’t offend anyone; I am merely sharing my thoughts and opinion as a possible area to ponder on. Let me explain my concern.

Let me take platitudes first. I think platitudes are simplistic but often considered so correct and profound that they stop people from clear thinking or deeper investigation into possible causes and solutions. They have a preachy “you should” in them, but nothing helpful in the form of suggestions on related “this is how you can”. And because they are simple one-liners, they ignore many relevant aspects that affect relationships and care.

Take, for example, statements like “our parents sacrificed everything for us,” and “our parents gave us love, we should love them” or “our culture respects elders” or “we must always make our parents happy.” I’ve yet to meet anyone who disagrees with them, at least publicly. Prima facie, these seem good and moral and cultured. More important, it seems like all we need to do is love and respect and care for our parents like any good person should, and there would be no problem at all.

The reality is far more complex, both in terms of the complicated family relationships and in terms of the difficulties adult children face while handling multiple responsibilities and making compromises and choices.

Let me take just one aspect to elaborate–an implicit assumption that anyone, just by virtue of crossing an age threshold and having a child, is an unquestionable model of great parenting and selfless love.

Many of us in India have recently viewed a series on TV that talked openly of some problems usually swept under the carpet–things like female foeticide, dowry harassment and related violence/ killing, parents forcing children to marry, sexual abuse of children by elders and guardians, domestic violence. Who does these acts? Are there no elders amongst the perpetrators? And do they all die before they cross the age of sixty? The TV program provided alarming data and statistics regarding the prevalence of these problems. Though the show audience looked surprised when the data was presented, I’m willing to bet that most of them were well aware of these problems, and have seen them in their immediate family/ social circles, or even experienced them personally.

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A common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.
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Ignorance is not bliss…

After making yesterday’s post, memories have been flooding me. Memories of how people I knew well, good, well-respected, educated and informed, religious people would say things that could only be called cruel to my mother, because they refused to understand my mother’s ataxia and dementia, and how these affected her. People whom I repeatedly requested to change the way they talked to her, but they refused, claiming I was exaggerating things or just exercising “control” over my mother. That I was not doing enough to make my mother okay…

I could probably exhaust a month’s worth of entries over these memories, but I’ll select just a few and write of them today.

Take this elderly gentleman in our neighborhood, who was mentally sharp even though in his eighties, and he loved meeting people. He could remember everyone’s name and face and life history and hold interesting (well, almost) conversations with people. He would drop in to meet my mother sometimes. For some reason, it bugged him to see that she was not socializing with people, and stayed in the apartment all the time.
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when every one is an expert

Looking back at the years of caregiving, one stressor I remember is the unsolicited ‘advice’ (often more like admonitions) I kept getting from strangers and distant acquaintances. Everyone took it upon themselves to tell me what to do, how I could be a better daughter, why I was not good enough, what my ‘duties’ were, what my mother wanted and enjoyed and needed (often, these were people who barely knew me or my mother). It overwhelmed and frustrated. I felt defensive at times, intruded upon at other times. I did not know how to process this abundant flow of input.

Here are the criteria I evolved to handle this unsolicited flow from people I had not asked for help, and who barely knew me:

  • Are the advisers experts in the area they are advising on (medical professionals, experts in caregiving, in nutrition, exercise, rehabilitation)
  • If they are not experts, do they even know what my mother suffers from, or the full list of what I am doing and why?
  • If they are not experts, do they have a stake in my mother’s welfare, and would they be willing to help implement what they are suggesting?
  • If they are not experts, and if I fall ill thanks to the workload they are proposing, will they take over caring for my mother in the meanwhile, or look after me when I fall ill?
  • If they are not experts, have they experienced a parallel situation, and did they do themselves what they are proposing I should do, and did they remain sane while doing it?

If the person advising was not an expert, not someone who understood my mother’s exact problem , not a stakeholder or a volunteer, and not someone who had experienced and gracefully handled a similar situation, I took the input quite warily. I listened politely; if it needed checking out with an expert, I did so, otherwise, I set it aside. Handling advice became  amazingly simple after I set these criteria 🙂

The inflow of advice is near absent now.  I can see the discomfort of would-be advisers if I describe my mother’s condition. Looking back now, I suspect a lot of advice I got earlier was not about my mother – it was a statement of how the persons advising me wished to be treated if they were in place of my mother (as they understood it). Perhaps many of those authoritative statements were seeds they sowed in the ether that connects all beings, in hope that their children would behave that way when the occasion arose. And now, when it is too painful to picture themselves so helpless, they have no advice for me, only avoidance.

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