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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Negativity, projections, ageing, and some facts behind a story

Some more memories of my parents and ageing, and the people around us. This blog entry is about how my father, once known for his sense of humor and cheer, was used by a famous writer to depict negativity in her novel, and how I feel that the writer projected on my father her own negativity about ageing and ignored her role in it.

Over these last two decades, I have begun suspecting that most people don’t know how to interact with peers who are unwell and disabled; they mess it up, their discomfort/ disapproval is obvious, and then they go away blaming the unwell/ disabled person implying that they would have coped better with the situation when in fact they were unable to cope with even ten minutes of an interaction.

Anyway, down memory lane…

We were living in Delhi, and one of our neighbors was a well-known writer and also an acquaintance of my parents. They shared some close common friends, and this lady would drop by sometimes for tea or for an informal chat. Then my father fractured his hip, and we went through two years of his being bedridden, improving, getting worse, and so on, till he finally passed away. This writer visited us a few times, and I would also meet her in the apartment complex sometimes, exchange a few words. Just social.

Sometime after my father’s death, a neighbor told me the writer had written a new book, allegedly fiction. Many of the characters in the book were from our apartment complex, and recognizable. She’d talked of the small things people consider private. She’d implied things. People were not happy about it. “You’re in it, too,” this man told me. “You and your husband and your mother and your father and his illness.”

I froze in shock.

The turning point, and becoming proactive

Thanks to Internet, by the time I moved along with my mother to Bangalore, I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her in Bangalore; I had not managed to do so in Delhi. As I described earlier, the one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need. There was some language problem because attendants here were not that good in Hindi, but I’d created a phrase book of sorts, and would supply each attendant with a couple of Kannada-Hindi books like Rapidex. I also made sure that the attendant had enough to read/ amuse herself.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.

Reshaping career and identity

Things did not improve after the initial adjustments and it slowly dawned upon all of us that the responsibility of looking after my mother was not going to be that simple, solved with shrinking-out-of-her-view and take-an-episode-at-a-time. This was an ongoing project.

My husband’s work involving a lot of travel. My son was in his critical years of schooling (close to the board exams state). It therefore seemed natural to me that I should assume more of the work required to cope with my mother’s situation. Besides, I knew her better than hubby and son. I was her closest relative, and had lived most of my life with her or near her, and was best tuned to understand her.

I was working from home anyway…

Paring down to essentials

The process of adjusting life to cope with my mother’s situation began when her confusion and memory loss started becoming visible in longer interactions, well over a decade ago. She had not been diagnosed at this time (though we had been visiting neurologists) and we made these adjustments in response to her strange behavior and our failure to reach her through reason and negotiation.

My main focus of adjustment at this point was to create an environment that minimized her rage or frustration cycles. This was, I confess,  not as part of some well-thought out, compassionate and caring strategy, but a form of self-preservation. There was an air of helplessness and frustration. We had no idea she was suffering from a medical condition. Her “unreasonable” and “dictatorial” methods seemed parental meanness, of the sort movies depict, and I was trying to stay safe and sane.

For example, if she wanted her food served hot and got agitated otherwise, I tried my best to be around to make it and serve it hot.

Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.

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.

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.

Day 2 and warming up to the blogging

Yesterday I thought I’d do a neat fit-into-boxes categorization of a month’s worth of blog entries, but I found I was too scattered in my thinking, so I’m letting my instinct take over till I get back my “blogging fingers.”

Here, for example, is one thing that bothers me…

Sometimes, when I tell others (non-caregivers) of the stress that dementia caregivers face, or of the challenges posed in looking after dementia patients, they semi-shrug and say, “Oh, we know the problems of looking after elders–doesn’t everyone! But our parents brought us up, so it is our duty.” Some even say, “You think those people have it tough because of their parents? You should see my parents! Really, my parents are the limit!”

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.

a paradigm shift by moving beyond concepts

I mentioned yesterday that my effectiveness as a caregiver improved and my life became less stressful once I moved from a role of ‘doing things right’ to one where I became an informed and involved caregiver.

It seems obvious, in hindsight, that caregivers should understand how dementia affects a person to become effective and creative in their role.

But I experienced an even bigger shift when moved beyond book-knowledge  and allowed myself to soak the concepts at an emotional level. The real benefit came when I extended my understanding beyond the dry theory level to a place deep into the heart.

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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behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside

thought experiments and dementia-related priorities

In a rather interesting presentation I attended in September 2008,  Dr. Ali Khwaja of Banjara Academy asked a roomful of persons associated with dementia caregiving: how many of you believe you will get dementia? Picture a roomful of people, sixty or more. Only two persons raised their hands.

The percentages are not quite that way, folks . The 2009 report on dementia facts and figures (USA) gives Alzheimer’s as the sixth leading cause of death, and the major risk factor is age. According to American statistics (see report at www.alz.org) Of the current population in USA that is 71+ in age, around 11% men and around 16% women suffer from dementia (there are more women because they live longer). It is estimated that more than 20 percent of women reaching the age of 65 would ultimately develop dementia (estimated lifetime risk), compared to approximately 17 percent of men.

dementia caregiving in India, some thoughts (part 2)

There is a lot of material available on the web (free) on dementia and caregiving. There are also several books.  As a caregiver, I read these to educate myself and make caregiving smoother for my mother and myself.  I face one problem: most of the material assumes a social and cultural context different from what I find in India.

Briefly, books, pamphlets, write-ups available usually assume an American/ European/ Australian culture, where people are likely to live independently, openly (and without hesitation) make choices that allow them to “have a life”, discuss their desires and needs, and have their privacy respected. Specialized tools are available, and information on dementia is widespread. The role of support persons and caregivers is recognized and respected. The environment in India differs along these axes in varying degrees. We must therefore re-interpret some lessons/ suggestions, and explore alternate means to meet the intent. This is applicable to caregivers, counselors, support groups, and  NGOs.

Here are my initial observations and thoughts on differences and possible ways to re-apply the underlying ideas in our context. I would love feedback and suggestions on this material so I can develop it into a more usable note.

Privacy and independence In India, people openly comment on others, judging and criticizing them for the choices they make, for what they look like, for what they are doing and not doing. Caregiver actions are therefore, fair game for everyone. Many people who comment are well-meaning but ill-informed. They pass caustic comments, especially if the caregiver is a daughter or daughter-in-law and the visitor is elder (and elders are always experts ). Worse, visitors egg on the patient by telling them to demonstrate more will power, or criticize/ scold  the caregiver in front of the patient. Unfortunately, methods of maintaining patient and caregiver sanity in face of such visitors are  not addressed in books on dementia care, because they assume a society where people (even if judgmental or critical) are unlikely to voice this directly (however, they may call up social workers and the police ).