My lowered social immunity, unsolicited pity people have for my mother, my wanting to curl away and hide: I need a break

The last six months have been hectic, and I’ve got this exam-end hysteria coming on so this will be a rambling personal post on life, on things that never seem to change, on my sense of futility that probably indicates that I need a break. And no, I’ve never claimed to be an out-and-out optimist; I just keep doing stuff and hope I don’t get tired, but sometimes I do get dejected and need to step back for a few days, maybe a week or two.

Let’s talk about this sense of futility….

Just a few days back, as part of some link checking, I found myself re-reading a post I’d written over two years ago (here: Ramblings on love, hate, and a life worth living). I got this sinking feeling that things have not changed since then. I’d written about the same topic again, in less detail around two months ago, and things have not changed since then either. And I realized this was one of the reasons I have been withdrawing from even the few physical contacts with persons I have.

I do not socialize. But I bump into people on my walks, or elsewhere, and more than half of these stray conversations end up making me feel utterly disconnected with others. I don’t mention my mother’s state unless someone explicitly asks me about her. When I answer, I note that most persons seem unsatisfied; they seem to expect something to have “moved” since the last update–a miraculous recovery, or a death, something different and perhaps more interesting. The “she’s stable but deteriorating slowly” perhaps sounds like a boring movie. Maybe that is the reason they stop registering what I say, because they often repeat questions I have answered several times earlier (yes, she is still bedridden, no, she cannot walk even to the bathroom, no, she still cannot talk, but she seems happy, she is healthy given her state).

Unfortunately, not many persons listen and respond in a matter-of-fact way to what I describe. Very few persons accept my reality and my mother’s reality as just something that is, as a fact.

I appreciate it when people understand, or try to understand. Or if they knew my mother, we can sometimes share a sense of loss for what could have been, though we all know regret and sorrow are futile. But yes, we can share that. I could do with a hug sometimes, too.

Sometimes, people express surprise that we are caring for my mother at home given her state, and someone may say, “I don’t know how you handle it!” I understand that surprise. Before I was thrust in this caregiving situation, I too hadn’t realized this work could be handled by ordinary persons🙂

But hardly anyone I meet nowadays knew my mother when she was alert and active. Very few of them know me other than as a neighbor/ fellow-stroller/ other casual acquaintance they sometimes bump into.

I am not surprised or upset when people can’t understand or remember the specifics of my ,mother’s state; I don’t expect them to be that interested or attentive–why should they, it is not their direct concern… (I keep forgetting the status of their various grandkids, don’t I?)

My problem starts when people ask questions, and then on getting answers, they show their discomfort by implying I am being “negative” or lacking “faith” (how is that relevant?) or that I am complaining about what is “my duty”. Hey folks, all I did was is factually describe my mother’s current state in response to your explicit questions. To label statements of facts as “negative” or “complaining” seems unfair to me.

What really disconcerts me is when people shudder, show revulsion, and then express pity.

I don’t like people thinking of my mother with revulsion and disrespect. I do not like people pitying her. I don’t like being told, “How awful, I would rather die than be bedridden” or worse, “Wouldn’t she be better off dead?”

When I say pity, I mean the pity tinged with a vague contempt and a keep-the-distance air. Genuine empathy, or just acceptance and companionship is welcome, most welcome. But facing contempt and revulsion and pity upsets me.

Two years ago, when I wrote that blog entry , I despaired about people who told me they thought my mother would be better off dead. I still feel upset when people talk like that, and now such interactions make me shrink away from contacts even more that they did two years ago.

I do not like it when people compare my mother’s situation with a vague standard of “normal” and “acceptable” and find my mother “lacking.” Such judgment creates a distance that makes me alien.

I don’t want to feel an alien.

I sometimes wonder how tough it must be for people who are differently abled and must be facing this subtle (and not always subtle) gap all the time. One shouldn’t have to work hard at being including in mainstream humanity. Everyone should be naturally a part of it…

My mother is bedridden: that is a fact. If hearing about it is uncomfortable, people can simply say, “This makes me uncomfortable. I do not know how to absorb or respond to such information, sorry. Can we talk of something else?” That would be a more honest and considerate response than comments that are either critical or pitying.

Pity and revulsion are very different from understanding and empathy. The former chills the heart, belittles and distances; the latter warms the heart and provides companionship and solace. I think the difference would be easy to understand if people placed themselves in the other person’s shoes…

Some decades ago, I was clueless about caregiving and death and such stuff. I never knew how to handle situations where, in response to my social question on what was XYZ doing, I got an answer that said XYZ was involved grave illness, extreme caregiving, a fully dependent person, an impending death😦 I would wish I had never asked that question. I would wonder what to say without being rude. It was not that I was devoid of concern or sympathy, it was just that all words seemed shallow and flat at such a time.

Luckily for me, I am not a very talkative person, and silence, nodding, a few hmms often sufficed.

Speaking now from the other side of such interchanges, I still feel silence, true listening, and showing acceptance work well enough.

On the other hand, well-meaning people who find silence uncomfortable may try to fill it by blurting out advice that they have not thought through, or by passing comments. They may end up sounding insensitive. I mean, did they really want to convey contempt and revulsion? They probably did not pause long enough to think how it sounds to people on the receiving end.

As for talking about dying…

So okay, awareness of what a bedridden person may want is not common knowledge. People typically assume that a bedridden person must be preferring death to such dependence; they have not examined the possibility that a bedridden person could have a life as worthy of living as anyone, and he/ she may want to not die. Or that a bedridden person could be happy.

Do people living non-ideal lives always want to die when things are not perfect for them?

I know that I definitely don’t want to die. I want some things to change, yes, and plenty of stuff makes me unhappy, but whether these things change or not, I want to live. I suspect that is true of most people.

Of course, people often say, “Oh, I would rather die.” I think that has become a way to express that something is very unacceptable. I think the “would rather die” is a desensitized sentence that ends up being judgmental and presumptuous and insensitive if there is someone nearby who is currently in the position to which death is “preferred”. People routinely use the “rather die” clause when faced with quadriplegics, bedridden persons, or anyone differently-abled. I think sentences like “I would rather die” are insulting to them.

I don’t think people who say “I would rather die” intended to insult.

I think when people say “I would rather die” or “I wouldn’t want to live like that” or “I will never be like that“, they may be trying to distance themselves from imagining the state of the other person. Perhaps what they are saying is, “I don’t want to know or hear of people like that; it makes me very uncomfortable. And I do not want to even remotely think I could be like that. ” Perhaps they are saying, “The situation, the person is alien. ” Perhaps they are even saying, “Anyone in this position is less human, less worthy of life than we are“…

…and I don’t think they are registering what it may sound like to the person on the other side. They are probably busy processing their own emotions regarding a situation they wish they hadn’t encountered, and expressing their discomfort using words they often hear others use🙂

The “would rather die than be xyz” statement is possibly a word pattern adopted without examination.

But I do not like to be the person hearing those statements. When someone talks like that about my mother, I get trapped into a mental loop of thinking: I did not volunteer any information, I did not ask them for anything, I did not complain. They have to do nothing for me, then why heap bad wishes on me? And now they expect me to agree and be grateful for their “concern”!

I cannot understand what sort of response to make, so I do the diffident smile and topic-change instead.

Such interactions drain me.

As you might have guessed, I had some such unpleasant experiences even in these last few months. They had a downward effect on my happiness quotient😦

I must also admit that my social interaction immunity levels are currently low, or I may have weathered the comments better.

This is because for these last six months I’ve been pouring myself all-out into project after project. I figured out how to make screen-recording videos and made some. I created a complete Hindi dementia website. Wrote and introspected for my month-long blogfest. Redesigned my personal site to create a section to share stuff with volunteers. Plus, back-end maintenance of my websites, caregiver support through email and phone, new caregiver interviews, stuff like that. Exhilarating, but also tiring.

I need a break away from high-paced, self-imposed work, and a break away from interactions that could go awry and sap my already-low funds of good cheer. I need the comfort of a closed supporting circle for some days where I don’t have to conform to being “positive” by denying facts or hiding them, where the people I interact with understand me or are frank enough to state they do not understand me. I need a break from preachy talk, critical talk, unsolicited pity.

For a week or two therefore, I plan to stick to simple work, talking to caregivers who contact me, responding to stuff, but hold back from starting anything new or massive. I may catch up with emails to friends. Or work on a jigsaw or read a fantasy novel. My wishlist folder shall remain unopened, ideas on hectic projects shall remain on the shelf. And then, after a week or two of this break, I will peer at my wish-list and ask around for ideas, and figure out how to prioritize between the various ideas…

Maybe I’ll even venture out socially and say hello and risk being asked questions.

Post referred to in this blog entry: Ramblings on love, hate, and a life worth living

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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 My lowered social immunity, unsolicited pity people have for my mother, my wanting to curl away and hide: I need a break

  1. Most people would have no idea what to say given the circumstances, you’re right there, anything they say sounds wrong, hurtful, insensitive.
    And yes, there are people who don’t give a damn, but a large section are empathetic but lack the skills.
    Maybe I’m being optimistic today, for a change.🙂

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