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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A nuclear family sans elders, blissful ignorance about ageing and elders, rude awakenings

While I continue mulling about ageing, here’s a confession about my blissful ignorance about ageing and dying as I grew up in a nuclear family, just my parents and I, and then moved over to my own nuclear family with my parents nearby. Truth is, right till I was almost forty years old, I never spared a deep-enough thought towards ageing or death. Not that I imagined that people lived forever. I knew people died, I even knew they got frail and dependent and fell ill, often more so if they were older, but I never thought of how it impacted them or their families and all that.

I’ve learnt stuff since then, though

My mother’s parents died when she was very young, as did my father’s mother; my father’s father (whom I called Baba) lived with his stepdaughter in Delhi because my father was on postings outside Delhi. Baba would visit us for a few weeks every year, a frail man who carried a cloth bag full of Urdu and Persian books when he went out for long walks. He did not have anything much to say to me. For those few weeks when he was visiting, home would seem somewhat different, but not by much. He was in good health, and except for his habit of smoking the hookah, there was no oddity of his that I noticed too much.

When my father finally got posted to Delhi, I remember this discussion on whether Baba would want to move in with us, but Baba wanted to stay in Delhi 6 with his cronies nearby. My contact with him was this once-a-month visit when my mother would drive down to Turkman Gate with me, and Baba would come to our parked car by rickshaw and she would drive him home for lunch with us, and a few hours later, he would be dropped back and all would be normal again for him and for us. Then he started falling ill, and his visits reduced, and then he fell more ill, and there was talk of whether he should now be looked after by his one and only son, my father.

A year later: One year of care for a bedridden mother

Last October, my mother became bedridden, a consequence of the progression of her dementia. Frankly, I had always dreaded the possibility of taking care of someone so fully bedridden, and everyone I knew dreaded such a state, too. With a year over, I guess it’s time to share how she reached the bed-ridden state and how home care for this has been this last one year.

Looking back to the months before she became bedridden, I am surprised I didn’t realize how much she was deteriorating. She was facing obvious problems while walking; she would not lift her legs, even on being prompted. She would drag a leg only after a lot of coaxing, not lift it. Sometimes she would move the same leg twice; for example, she would move her left leg twice while the right leg stayed back, and we had to yank her upright or she’d have fallen. Every trip to the bathroom was an ordeal for her and for us, and soiling became common. She reduced speaking, and barely showed any interest in anything. We hoped she would improve, and kept trying to talk to her, playing games, and so on, telling ourselves that she was tired.

On a day in late September, while sitting in a chair she fell sideways at a strange angle and bumped her eye on the chair’s arm in a contortion a circus performer would have envied. The eye turned alarmingly bloodshot; frightened, we called the doctor who prescribed eye drops to start on and then came for a visit. She examined the eye with her torch and told us she didn’t think there was any deep injury, but recommended we get my mother checked up the next morning by a specialist who would have the right equipment to do a proper check. So next morning, there we were, at a hospital, my mother in a wheelchair, flanked by me and the girl who helps me look after her.

Everyone at the hospital was very nice to us. The attendant who pushed the wheelchair talked sweetly to my mother, the receptionist talked sweetly, the nurse, the doctor, the doctor’s intern, all were extremely helpful. My mother looked piteously at them and held out her hand; by turns, they took her hands and squeezed it reassuringly.  We confirmed that the injury was superficial, and that nothing needs to be done, and came back.

Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. ONe day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.

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.

some things are always difficult

A friend, whose father is in his nineties, is currently overwhelmed because he is in the hospital with multiple problems. As she runs around, trying to get him all the care and attention he needs, she is praying hard. I wish her all the courage she needs to face this and do the best she can, and with a sense of peace.

The fact is, seeing a parent (or anyone we care for) in a serious condition is always difficult whenever it happens, however much one can see it coming.

beyond acceptance in caregiving–the journey through unknown territories

When I was twelve, a palm-reader told me most authoritatively that I would travel extensively through unknown lands after I crossed the age of forty. I believed him, especially when an expert astrologer said much the same thing based on my janampatri (birth-chart). Then, at forty, when I should have been planning my world tours, I got drawn into caregiving, and I said, well, so much so for all those predictions

Looking back, though, caregiving has been a journey through unknown lands, albeit of the internal kind and not quite the sort I expected. Like any adventure, it has involved unexpected situations and needed creativity and improvisations, and below I am sharing some of the landscapes I have viewed…

The landscape of parents, seen as a fellow-adult -Too many of my friends and colleagues stay ambivalent in their attitude towards their parents. Some dislike them, even hate them, and never get the time (or energy or will) to resolve this in time–it rankles inside them for years, and sometimes becomes a core that is so heavily shielded they don’t venture anywhere near it.  They react to their parents as if they were still children being imposed on, and move away physically/ emotionally as soon as possible, staying distant. The discomfort is palpable.

moving beyond the five stages in caregiving

When I started this blog, I planned to make entries daily, or at least weekly. My year-end consolidation, however, shows all of five entries in almost seven months…tsk tsk…

So I have resolved to blog daily for the entire month of January 2009 to get into a habit of blogging.

That said, I was sorely tempted to leave this entry (1 down, 30 to go) with just this announcement, but that’s cheating. My intent of blogging is to share and introspect, and just announcing that I will blog every day for each of the 31 days of January meets the count of my goal, but not the spirit.

So, here’s a non-trivial entry on a topic that’s been buzzing in my mind… my new perspective on caregiving.

Over the last several years, caregiving has come to occupy an increasing part of my day, in terms of time, effort, mind-share. This is not what I trained for, not what I dreamed of, and definitely not what I can say I “signed up for” when I started on my life. It is a role thrust on me, and for the initial part I handled it with a mix of resignation and resentment, with huge dollops of helplessness and despair. Energy spikes of a job well done were extremely rare; the down-in-the-dumps feeling rode high. I had to make too many changes that were major, and that I considered compromises and defeats and deviations.