Forcing caregivers into a one-dimensional care role

While it takes time for people around a dementia family to accept that dementia is being caused by a disease, an interesting (read: sad) effect is that when people accept the importance of the caregiver role, many also assume that the primary caregiver’s life should revolve around care, and that he she should not and cannot do anything too different from caregiving.

To explain what I mean, let me share some things I have been asked/ told when seen outside home by people who knew my mother had dementia:

• Oh, you are here, but what about your Amma? Is she alone? Who is with her? Who is taking care of her?
• I know you have offered to help me, but I don’t want you to neglect your Amma to do my work.
• I don’t understand how you can go out when your mother is so unwell. You should be with Auntie.

Typically, these statements come from persons who do not know my mother at all/ have never met her, and to whom I have explained the care arrangements around my mother umpteen times and so they know that I spend quite a bit of time with my mother. But that’s not enough for these caregiving purists.

Though I remain polite when subjected to such statements, I do feel unhappy at such comments. I remember one instance when one person wanted to come home with me to “see for myself that Auntie is being taken care of properly and will not suffer by your absence” before she was willing to join hands with me for a project. I am sure this person would have been deeply offended if I’d said I wanted to inspect her home for how well her parents were being taken care of when this person went to work .

I don’t think the people who speak like this realize they are being intrusive or insulting; they are so engrossed in their need to see the right thing done that they assume the mantle of representing my mother and consider themselves God-appointed officials responsible for ensuring her wellbeing. They assume that any activity I do away from my mother detracts from her welfare; it constitutes downright neglect, or at least shows a gap in my love and duty, and therefore they have no qualms about reminding me what I must do.

I think this stems, in the main, from a lack of understanding dementia and its care, and seeing the caregiver solely as performing a one-dimensional role rather than a full-fledged person. On one hand, we have people who don’t see dementia as a medical condition, and then we swing around to the other extreme where people see dementia as an acute condition requiring intense care all the time.

Dementia care is an overwhelming role, and yes, it subsumes many aspects of the caregiver’s life, which often has to be completedly redesigned around it. But once there is a stable care arrangement, caregivers may be able to balance the care with other roles, responsibilities, interests and hobbies and live a more wholesome life. Such comments by outsiders place pressure on caregivers and take away that small sense of getting-away that they can have when they are doing other things. Such comments serve to box in caregivers into a confined space.

Here are some facts for outsiders to consider before they pass such comments:

• Dementia is not an acute condition; it is not a three month or six month intense care condition. It lasts for years. We cannot apply implicit standards of care suitable for short-duration acute diseases to the ongoing care of a condition that could last for well over ten years.
• Patients do not want to be crowded in all day and night any more than any of us do. They like company at times, but not all the time. Too much company can stress them
• Given that this condition continues for years, it is unfair and unrealistic to expect that caregivers should not budge from the side of the patient or have any life other than caregiving

There is no need to view caregivers outside home as kids playing truant who must be nudged back to their study table

At times, though, I suspect that such comments have nothing to do with me or my mother; persons who see me get reminded of a unpleasant situation (a mother with dementia, a caregiver role) and so these persons unconsciously grab any argument that would make me withdraw from places they may see me. Okay, so perhaps I am a cynic, but tell me: why do these people want to push me back into the caregivers-only box instead of rejoice with me that I have managed some time away from caregiving, or that I am living a more complete life with multiple activities?

Another funny (sad?) thing I’ve noticed (and also heard from other caregivers) is how people forget that a caregiver knows things other than caregiving. Perhaps this is a corollary of the above-explained attitude of some persons.

Suppose a caregiver was, just a few months ago, a manager/ accounts person/ human resources consultant/ computer specialist but is now caregiving full-time, and she finds she has time to spare–not enough to return to her profession, but enough to do something productive. When such caregivers offer to help others, such as at some local NGO, the work they are given often does not use the professional skills they have. They may, for example, be asked to sing at a function, or talk to patients or play with them (good and necessary activities, of course) and the persons offering activities to caregivers do it with an air of helping caregivers. Had they remembered the complete profile of the caregiver, they may have found effective ways to tap the caregiver’s professional skillset.

I suspect that knowing that a person is a caregiver swamps all other roles the person is capable of; it is as if the mental resume of the person gets wiped out and replaced with one word: caregiver.

Have you had such experiences? Any idea why this happens?

Poor awareness and the danger of very few representations

Some months ago, as part of the dementia articles that appear during the September Alzheimer frenzy, I saw an online newspaper article that (wrongly) gave a major symptom of dementia as “severe headache” in a boxed set of bullets. Curious, I read the article and discovered that the reporter had interviewed a dementia patient who also had a brain tumor. The detailed report did not claim headaches to be a dementia symptom but whoever formatted the article and added the box of bullets was probably a different person–someone in a hurry and with no knowledge of dementia.

I wondered about the persons reading the article, who may carry the impression that dementia results in a headache. And since then, I’ve been pondering about how much the accuracy and scope of representation matter for subjects where awareness is low.

I have worked in software organizations and consultancies and done assignments in a variety of settings, like manufacturing units and hospitals. If I read an article on these, I don’t get swayed by some dramatic fact; I place it in the context of what I know, and then decide how much weight to give this new input. But when I read something about a setting I know nothing about, my first tendency is to assume that what I read is both correct and representative, and it takes me a conscious effort to critically examine what I have read and to do fact-finding; I don’t have the energy for that often, and so the first (and probably faulty) impression stays.

So when I was a child and I saw movies showing cancer as the instant trope for death and dejection, as a hopelessness, I assumed that to be right. I even remember that when someone told me I was cancer, I was terrified I was about to die. (They meant the astrological sign). Similarly, I had mental pictures of bars and drinking (Helen-like dancers gyrating and drunk heroes sulking), of mental problems, and of zamindaars.

Over the years, replacing these with more balanced mental representations had taken effort, and I have found such replacement easier for cases where my base of known-persons-with-condition is higher. I know now that cancer is of many types and detected in many stages and that there are treatments with various efficacies and side-effects and trade-offs and remissions and relapses. The license taken by movie script writers were for dramatic purposes, because those were movies, not documentaries explaining cancer. I know this because I have read more, heard about many more patients, and thought more. On the other hand, I still know very little about mental problems (because the condition is kept under wraps and I don’t know anything other than what I’ve gathered from a few articles). And I have no confidence at all that that I know how zamindari works at the ground level, since I am never sure of the veracity of my information sources.

Or take another example. If I know only two persons from a region and both are taller than six feet, then I will end up assuming that everyone from that region is tall, even if I logically know that is not necessarily true. We assume our real-life sample size to be representative, howsoever small that sample is.

So if the only case of dementia we know was one where there was a brain tumor and a consequent headache, we may assume that brain tumors are a typical problem seen alongside dementia… (which, BTW is not true)

Or if the only person I know with dementia was a lady who was mild and withdrawn and sweet and cooperative and where the caregiver was affectionate and handling the patient well, I may assume that any person who says their patient is aggressive or difficult must be a bad caregiver and is therefore facing problems. But if the only person I know with dementia is one who flings shit out of the window without provocation, then I may assume that is the norm.

The fact is, the smaller the sample size, the larger is the chance that the chosen examples will be from the extremes.

The depiction of disease in movies intrigues me. The story-teller is not creating a movie as an authoritative documentary on the topic. To be sure, they are obliged to do some research, but beyond that, they will choose a plausible deviation that lends itself to an impressive drama and will grip the viewer emotionally. The chosen storyline may therefore barely skim the realms of the possible rather than be close to the norm; yet, when we know very little about a condition, we may consider the movie to be a depiction of the average patient even though the movie makes no such claims.

There are five Indian movies that I know of that depict dementia; these are: U, Me aur Hum (Hindi, Kajol), Black (Hindi, Amitabh Bachhan), Thanmatra (Malayalam with English subtitles, Mohan Lal) Maine Gandhi Ko Nahin Maara (Hindi, Anupam Kher), and Dhoosar (Marathi, directed by Amol Palekar, not yet available as DVD as far as I know).

I have seen the first four of these, and they are each quite unique in what they depict, and they also differ in how the story builds in the dramatic elements alongside the dementia depiction.

The Kajol movie, for example, really stretched my credulity and I would not recommend it to anyone who wants any idea of dementia (which is not the same as saying it could never happen, only that it seems so unlikely that it should not be part of a small sample size and should not be used to inform people about what dementia is). In fact, I don’t know a single person whose life has been touched with dementia who considers this movie a good depiction.

On the other hand, Thanmatra was created with the input of some doctors from Alzheimer’s associations and is a sensitive portrayal, but even so, I read an interview about how some doctors felt the movie had not depicted the majority situation (it depicted early onset, not late onset) and that the deterioration-over-time-frame aspect should been shown in more detail, and the director said (quite rightly): “This is not a documentary, so I am allowed to take certain liberties.”

I’ll probably get around to blogging about my own comments on each of these sometime or the other…

…but meanwhile, I’d say, if you want to understand dementia and care, don’t assume that the one or two cases you know are representative

…and if you are someone concerned about spreading awareness, help gather more stories, give people a broader base of experiences…

Young today, a dementia caregiver tomorrow; let us involve the stakeholders

There is something very energizing about seeing young people buzzing around having rip-roaring fun, doing things, getting all charged up about causes–there is so much energy there that it inspires (except if one has to match it, because then it intimidates). But I think we underestimate what the young of today can do, and don’t give them the information they need to improve their tomorrow.

I refer, of course, to informing youngsters about some of the harsh facts about dementia and how it will hit them if they get yanked out of their lives to become caregivers

Youngsters are often involved in elder care through various schemes, typically involving improving the quality of life of elders through intergenerational activities, or doing some chores for elder care facilities. There are “adopt a granny” type of projects, and sometimes school kids may also be taken to spend an afternoon at an old age home, or do a craft project for some grandparent-aged persons, and so on. Play periods are fixed where the old and young finger-paint together, and some such intergenerational activities are held with dementia patients, too.

Such interactions are fun, and also useful in a larger sense, especially if they move beyond the hour of fun and make children more sensitive and equipped to interact with grandparents (both those with dementia and those without).

But most such activities treat the youngsters as young people, and not as persons who are the citizens and voters and, most important, the dementia caregivers of tomorrow. This type of involvement falls under the umbrella of love, duty, culture and respect, and even “social work.” Some weeks ago, I was talking to someone in her late twenties/ early thirties, and she felt that getting youth more interested would depend on the ability of the organizers to arrange a certificate or some career building grade or something at the end of it. That youngsters see such activities as something they do for others, like social work, and while they may enjoy it and be enthusiastic about it, they see themselves more as “givers” than as “stakeholders.”

I think we are missing out something big here.

Look at some other causes, like the environment, the plastic issue, pollution issues and crackers, the corruption issues. Youngsters get involved in these because they are concerned (or so we hope) about the future of the world in which they will live. If pollution grows too much, they see their future as being impacted. So they get involved, and while they may not all move mountains, their involvement is not a part of duty towards others, but for their own future lives and as stakeholders.

Take dementia. We have frightening figures, we talk of how, with increased longevity, the prevalence of dementia will also increase, and also, how with the breakup of the joint family system, the support will increasingly have to be provided by nuclear family units which have fewer people and hence, less of a buffer to absorb the caregiving load. It is these youngsters of today who will be impacted, right? This young boy or girl whom we now send to play with a granny and who sees that as part fun and part chore, may two or three decades later have to opt out of a career to become a dementia caregiver…

…And that person, not so young now, may wonder why nothing was done to stem the dementia problem growth decades ago.

Just as we tell the youngsters that if they don’t stop plastic pollution, the world will be unlivable some decades later, shouldn’t we also be engaging them about dementia? Shouldn’t we let their generation know that there is a medical problem for which there is no prevention, no cure, no treatment even, and that, further, there is also no support facility to help them take care of the patient?

Suppose the youngsters learn about dementia. Suppose they realize it could constrict their future unless they act today. Young people have a right to know the facts because dementia could impact their future. That knowledge gives them a chance to lodge their protest or raise their voice for this the way some of them do for plastic and corruption. The youth may then choose to bring their energy and intellect to careers that will change the dementia landscape

Of course not all kids will bother; not all adults bother, either. But maybe some children will get involved and do something or lobby more, or make career choices that impact the course of research or care support. Maybe a youngster who is today ignorant about dementia has the potential to create the wonder medicine that we are waiting for; let us at least tell her about it so that she may get inspired or concerned and change her career direction accordingly.

I think it is our role and responsibility to inform the young about the situation and the risks involved, and then let them decide whether this cause is worth taking up. Let us not be (unintentionally) patronizing towards them by thinking this is too complex or depressing for them or that they will not want to know or will not be able to make a difference.

About doctors, hospitals, healthcare, and a dementia care support wishlist

One thing that concerns me deeply, both as a caregiver and as someone interacting with many other caregivers, is that luck plays a big role in the quality of support received from doctors and various medical support systems. Many times, alas, it is bad luck.

There are dedicated, compassionate, and well-informed doctors who support family caregivers through timely diagnosis, sensitive handling of the explanation, and appropriate medication with due attention towards possible side-effects. They also guide the families to various support systems and counselors who can then help the families care for the patient without the caregivers becoming basket-case burnouts themselves. We also have GPs (General Practitioners) and family doctors who notice the early symptoms in a patient and alert the family about the need to check for dementia, and direct them to appropriate specialists.

But this is rare.

The Dementia India Report 2010 admits that awareness of dementia is low even amongst the medical community and support providers; some excerpts:

…there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals

There is no structured training on the recognition and management of dementia at any level of the health service

Health care services remain insensitive to and do not provide the much needed information and support for carers and family members

In a list identifying “Barriers to dementia care in India” (Figure 4.2) the report includes “Poor awareness even within the medical fraternity”

My own caregiver experience includes incidents where specialists examined my mother but did not warn me where her cognitive decline was headed, and even when a kind doctor diagnosed her (and should I really feel so obliged to a doctor for doing what I went to him for?) he did not direct me to caregiver resources or mention their existence in any form. For well over a decade now, I have regularly faced problems getting medical help from my mother from non-neurology doctors or from hospitals, with doctors not listening to me and depending on my mother (who was clueless and confused and intimidated), doctors insisting I leave my mother alone in the emergency ward and then leaving her unattended, doctors saying they cannot do anything for her because she does not “comply”, technicians rude to her because she cannot follow simple instructions…it is a long list, and I have blogged about some of these earlier.

Nor am I the only one with alarming anecdotal experience. I have heard of similar stories from other caregivers, and just as a brief sample for hospital and nursing support for dementia, you can check a detailed caregiver interview here. Or another interview with a cursory initial diagnosis and lack of alertness on side-effects here. Yet all caregivers I talk to also feel deeply obliged and grateful when they happen to (usually after repeated misadventures) reach a doctor who is sensitive and informed instead of being ignorant, dismissive, disbelieving, or unconcerned.

And again I wonder, should getting a diagnosis, getting information and support from the medical fraternity be so heavily dependent on luck? I know individual practitioners will vary on how good they are, but perhaps there needs to be a minimal standard, or an average, which gives patients and their families more hope for a diagnosis and support.

So here is my wishlist related to healthcare. A disclaimer: I do not know the medical education and re-qualification systems in India nor do I know to what degree the medical fraternity defines or enforces protocols of treatment, and I am totally clueless about the degree to which the medical and nursing curriculum currently incorporates dementia, but here goes, anyway:

• The curriculum of all healthcare professionals (doctors, nurses, technicians who operate medical equipment, and other healthcare staff) should include the basics of dementia; at a minimum, it should include how to communicate with and support such patients.
• The continuing education requirements of practicing doctors (non-specialists) should include a minimal understanding of dementia
  • They should be able to spot a possible patient and redirect this person to a specialist
  • They should be able to communicate with and support such patients and also know how important the family member’s input is while interacting with a patient
• If India does not have a continuing credit scheme, then a doctor who qualified years ago may not have had the opportunity to learn about dementia and if such is the case, perhaps the medical council (or any other body as appropriate) can circulate simple instructional videos and booklets on handling dementia patients to all current practitioners with a simple test and a certificate that the practitioner can display. While some doctors are self-motivated enough to read material if it is made available, others may be too busy or uninterested to do so without an incentive.
• There should be clear guidelines for clinics, nursing homes, path labs, hospitals, etc., on how to support dementia patients. For example, family members should be allowed to be present with the patient, the patient should not be harried for answers, and the family member’s input should not be discarded.
• Given the widely acknowledged fact of under-diagnosis of dementia, medical associations and other concerned bodies should encourage family doctors and hospitals offering “health checkups” to include preliminary dementia scanning as part of geriatric checkups. Inclusion of such preliminary checking for dementia in normal checkups of elders(just like BP and fasting blood sugar is) will increase early diagnosis and also improve awareness and alertness towards dementia; patients/ family members may then spot the symptoms themselves and approach doctors in time.
• Regarding specialists who actually diagnose and support patients and interact with family members:
  • Specialists should get updated current information on how to perform a complete diagnosis, on how to rule out/ treat reversible causes, and what the current medication and side-effect understanding is. This information changes dynamically, so circulation of updates is an activity that some national body hopefully performs at a desirable frequency
  • Specialists should be sensitized about the effectiveness of non-pharmacological interventions by family caregivers. Perhaps this does not strictly fall in the scope of medicine, but it will be very helpful to caregivers if specialists are aware of, and convinced of the utility of these interventions.
  • Specialists should have access to guidelines on how to convey the diagnosis (currently, this varies very widely in practice).
  • Specialists should have information dockets that they can pass on to families so that families can understand the diagnosis and learn how to plan and cope. To expect a ten minute talk (often less) to be enough for the family to grasp dementia and its impact is grossly overoptimistic.
  • Specialists should not hesitate to provide any tips and suggestions they have on home care, and it will be good if they can let the family get a realistic and comprehensive picture rather than just know about medicines (and lack thereof). There could be recommendations on what the specialists tell caregivers (and this should include helping them avail caregiver support mechanisms and services).
• End-of-life care and palliative care support should be available for dementia, and doctors should direct families to such specialists and guide families for the options and decisions.

I think one problem is this: often doctors see their role as more limited than what the patients and their families see their role as. Perhaps many doctors feel that advising a family on home care is beyond their responsibility area, and therefore do not comment on this. But if families are not directed to alternate sources of support, their “take home” message at the end of the doctor visit is that nothing can be done. Family members therefore do not realize that even if there is no medicine, other changes at home and in the way of interacting with the patient can make a lot of difference for the patient and caregivers. Families consider doctors as the most knowledgeable persons for any disease, and when the doctor does not say anything, the family assumes that means nothing can be done in any way.

I can speak for myself…When I took my mother to doctors for her various problems, I assumed that the doctors would let me know anything that would help my mother, or that they would point me to it. When one doctor claimed my mother’s problems were normal for her age, I assumed nothing could be done. He did not warn me that this cognitive decline could worsen and that I should get checkups done later. Even after another doctor gave me a diagnosis but the medication he prescribed led to hallucinations and he admitted that medicines don’t always work, again, I assumed that if there are no medicines, I could do nothing proactive to improve my mother’s life (or mine). The doctor told me that I should keep her as active as possible and be ready to help her more and more, but that sounded generic (like helping any old person) and did not set me on the path to look for caregiver tools. I dare say specific caregiver tools are not part of medical advice, but the point was, I did not know that I could benefit from such non-medical advice and that it was available. A lot of my problems (and my mother’s) would have reduced had I received even a half-hour worth of guidance or at least, pointers.

So that’s my wishlist above, and as always, I would love to hear what others have experienced, and what they think about this wishlist…

Posts referred to above are:

• Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates, and
• Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia.

Reducing caregiver isolation, working from home, using coworking

Recently, I shared my own experience of isolation and loss of social skills as I became more and more home-bound, and then I suggested that caregivers be alert about this possibility and guard against it. A few days later, I happened to talk to a caregiver and she described what she planned to remain connected to people even when she worked from home. I asked her whether I can share her idea, and she not only agreed, she even said that such sharing helps people and she also may pick up ideas if others share their ideas (hint, hint, to any of you who has ideas)

Anyway, so this caregiver looks after a dependent parent who has dementia and is immobile, but can be safely left alone for a few hours. The caregiver works from home, executing freelance assignments that she does on her computer and emails. She was once very active socially and her enforced seclusion dampens her spirit, so here is what she is considering:

This caregiver has an “office room” to work from. Now she will add some tables and chairs to this room to make it suitable for multiple users. She will then invite friends who work from home to use her office room as their offices. Each person will work on her own assignments while sharing the same office space and in the companionable presence of others, so that they all feel like working more and don’t succumb to distractions or feel lonely. The caregiver plans to put out flasks of tea or coffee (for which she may ask her friends to pool money, or maybe not, she hasn’t decided).

Years ago, when I started working from home, that mode of working was very unusual, and I did not know anyone else who worked that way. But now many persons work from home, and “telecommute” is common. And while such a mode of working saves on commute and gives flexibility, people miss the office atmosphere and feel secluded. The simplicity and do-ability of this shared-office-space-at-home idea impressed me.

There could be practical problems, of course, mainly on how to adjust to the presence of others at home when there is a patient to care for; problems I could think of were the patient getting agitated or making a noise, or needing some major cleaning up (as in soiled clothes, whatever) that is difficult to do with others around (or is offputting for others). And of course, if the patient is mobile, the patient may wander in and start commenting or objecting to strangers and so on. I expect, however, that if all the participants in this arrangement understand the patient’s limitations and are comfortable with it, that adjustment may be easier.

The other problem I could think of was, what if one of the persons invited to participate in this joint working did not fit? If that person insisted in chatting, or had a noisy way of working, or acted in ways that others did not like; how does one “expel” such a person without bitterness and unpleasantness? Who decides? How “equal” are the participants about such decisions? Could broken friendships result?

The concept this caregiver described is called “coworking”, though I had not known the word when she talked to me. Sharing such ideas, their pros and cons and practical implementation considerations, is exactly why we need caregiver forums.

It so happened that I was reading a book shortly after talking to this caregiver and I encountered this concept of coworking, an approach apparently being considered and used by many persons working from home.

The Wikipedia page is here: http://en.wikipedia.org/wiki/Coworking; an excerpt:

A 2007 survey showed that many employees worry about feeling isolated and losing human interaction if they were to telecommute. Roughly a third of both private and public-sector workers also reported that they didn’t want to stay at home during work. Coworking offers a solution to the problem of isolation that many freelancers experience while working at home, while at the same time letting them escape the distractions of home.

I guess there must be a body of knowledge and experience of people who have tried coworking. A quick search on Gogle showed me a group (http://groups.google.com/group/coworking, and a blog ( http://blog.coworking.com/ ) and of course, I have no idea how good or relevant these links are (against others that Google may lead me to). I also have no idea what is the best way to reach out and know more about making coworking work, but coworking definitely seems worth considering for people just entering the caregiver journey so that they don’t suffer as much isolation and can work for more years in a conducive productive and social environment.

So I thought I’d post the idea and also ask if any of you have any experience of trying it, and if you are a caregiver, then also any experience of how practical (or not) is it for you, and so on. Does it sound attractive enough to give a shot, and what pros and cons do you see?

Over to you.

Unwind: Black, white, shades of grey

Perhaps appropriate to a week when most of my posts have been about ageing, I was using my free time to work on the jigsaw alongside.

I never knew there were so many shades of grey…

…and they all look so different depending on the color of the adjacent piece.

(For the curious, this jigsaw is based on a rather well-known picture “Lunch atop a skyscraper” which has a Wikipedia page on it here)

What blogging means to me

Day 21, and I am well into this month’s blogfest, past the 60% mark, which (in my student days) was the cut-off for “first class”. Which makes me a “first-class blogger”, in a manner of speaking. Given that I was reluctant about this year’s blogfest, it is a relief that I have managed to blog every day so far. It has not always been easy, but it has also not been as tough as I had feared.

Blogging is, for me, a strange medium, both intensely private and openly public.

One some days when I sit down to blog, I am in a small little world of my own, just writing to sort out my thoughts and emotions. On those days, even though I know I am blogging, I forget that others may read what I write. On the sadder days, each word draws out with it a droplet of my blood, or so it seems. I am so alone, so tightly wound, and it takes time for the flow to come, if at all it comes. It is so private. It is only when I am about to click “publish” that better sense prevails and I go back and weed out things that are just too private or could be intrusive for others.

On other days, I feel I am in a cozy group of close friends, chatting with them about things that matter to me, and the blog becomes my way of connecting, being part of a circle that is real to me though it is virtual, and there is this warm glow that remains inside me as I write.

Then there are days I share my caregiver experiences. In the earlier days, I would write these as a solitary person, but now I am aware that I have, willy-nilly, become someone sharing these and ending up exposing other caregivers and non-caregivers to what my caregiving has been like. It is difficult to remain honest and not succumb to whitewashing my mistakes, and also difficult to maintain a perspective and balance so as not to skew the picture to be too whiny or Pollyanna-ish. Memories tire, especially as I am trying to narrate them not in an “it’s all fine now” but also trying to synchronize to how it was back then. I find that many people who have reached a point of peace with respect to caregiving often diminish the struggles they faced when they talk of the past. If you ask them about the past problems, they say, oh, it doesn’t matter. But those problems did matter back in the days when they happened. And there are enough caregivers facing those problems right now, and these persons would feel less lonely if they learn that they are not the only persons to face such problems.

Yes, dipping into the past is difficult, and I understand why people often talk like the problems never happened…

A lot of my life now is not about actual caregiving, but about supporting other caregivers and even supporting concerned persons who want to help caregivers. This ends up in my blogs, too, where I start sharing my perspectives gained from my contact with so many other caregivers, and even with concerned volunteers, and it is a relief to articulate my experiences and thoughts, and even to sometimes try and structure them to make them usable for others.

And then, last year, I tried using blogs for something very different. I used blogging as an online work journal to sort my thoughts about an area that deeply concerned me. My decision to post weekly blogs as I went through what I call my Adventures in Hindi kept me on my toes and made me more careful in my thinking and investigation. All through those four weeks, I felt I was in a working environment again, focused, sharing, committed to understand and explain. And at the end, when I reached my own decision on a specific way forward, I was much more comfortable with it than I would have been otherwise. (the first part of the 4-part blogpost is here: Adventures in Hindi Part 1: A mother-tongue fading behind a veil)

When I started this month’s blogfest, I thought I would not have anything to say. On Day 2, I sat down to jot down the topics/ ideas I could blog about and the list was not small. The list has grown and grown, but for many topics my thoughts are half-formed, and I depend, as ever, on the actual act of typing to help me uncover what I might be thinking.

I do find it funny that a medium that is basically a public sharing of an online diary allows me to feel introspective at times, in a cozy work circle at others, and aware of the public nature of blogging and sharing at other times. Yes, blogging keeps me connected, it gives me company of various sorts, it gives me a forum. Daily blogging is tiring, though, especially as I am a slow typist and very prone to making typos, and I will be happy to switch to weekly blogs once January is over.

Till then, the blogfest continues

[Part 1 of the four-part blogpost referred to above is here: Adventures in Hindi Part 1: A mother-tongue fading behind a veil]

Silver linings, budding seniority, dyeing choices

I must admit that part of my week’s obsession with ageing problems and support is that in the month of December I was called a senior citizen twice. I am a number of years short of that landmark, and the comment made me bristle, not just because it bumped up my age (something which even an elder-respecting society does not consider a compliment) but also because of the attitude with which those words were said…sort of, all is over for you, Ma’am, and so anything you do is unexpected and like a miracle. It was so dismissive and patronizing that it bugged me.

It made me wonder how I’d feel once I did cross the age of 60 and heard the word applied to me in that tone, knowing that the appellation was factually correct. Anyway, why should a particular age matter so much, and why should it be such a way of judging people? Are the Govt concessions connected with the age worth that aura?

I have, of course, only myself to blame for being taken as a senior citizen before I have reached that “silver” age threshold.

For one, I am not dead. If I had died when younger, I would have died wrinkle-free and black-haired, without having the word “senior” applied to me.

But, you know, I would rather be alive and senior, than dead and young.

As for the other reason I may be getting mistaken as an older person, it has its roots in a story…

This incident happened when I was around 35 years old. There was this really active lady in the neighborhood, always smartly turned out, energetic, much admired by all. Then, for a stretch of a few months I did not get to see her. When I saw her next, she looked…I have no other word for it…haggard. I noticed her wrinkles, her crow’s feet, the tired turn of her face, the straggly white hair. She looked so old. With some hesitation, very gently, I asked her what happened, had she been unwell? She looked at me in a very puzzled way.

“No,” she said.

“But…” I didn’t know how to let her how different she looked. “You look so…tired.”

She frowned some more, and then she burst out laughing. “I was very busy,” she said, her voice sounding quite normal. “I didn’t have time to dye my hair.”

Ouch.

Now I’m a rather lazy person.

I postpone my haircuts and manage to make do with one every two months, always getting my hair cropped as close as the hairdresser is willing to do, and then waiting till the hair is totally unwieldy and long before I go for the next haircut.

As for other beauty treatments…I got a facial done once, and all through that long and alleged luxurious facial, with almond paste around my eyes, cucumber slices on them, some other rich gooey stuff plastered on my face and neck, all I could think of was, what a bloody waste, I could have been reading a book instead. It was, as you might have guessed, my last facial.

Around the time this episode with the undyed-hair lady happened, my own hair had started getting a teeny-weeny hint of white. I tried to imagine a life full of fortnightly hair-dying sessions and touch-ups at home for the exposed white roots of the hair, and my mind boggled. I thought of people seeing me swing between old and young and old again every few weeks just because I had not stocked up on hair dye or I had preferred a book to a beauty parlor.

I decided right away that I would never dye my hair. If silver lines my hair, so be it.

So here I am, salt-and-pepper haired in a world where almost everyone my age has suspiciously jet-black hair or has “tinted” or “streaked” hair (whatever the correct word is) so that seeing someone who chooses to remain white-haired in public is possibly as unsocial and ill-mannered as walking out to the market in a dressing gown.

Last week I sat in a café and looked around at all the ladies around me, mentally replacing their dark black hair with suitably grey-streaked hair (by extrapolating the teeny hint of white at their hair roots), and I suddenly found myself in a room of so many old women. I also noticed, funnily, how that mental switch from dark black/ fashionably-tinted hair to old-fashioned grey hair also made it easier for me to notice their wrinkles and age spots.

So much so for not going by appearances.

Given that I am (currently) choosing to remain not dead and not dyeing, I expect I should be reconciled to be seen as a senior citizen before I am one I may walk briskly, remain trim, active and energetic, but my crowning glory sort of caps it all.

Wasted resources, missed out roles

When I was sixteen years old, I got admission in an engineering college and ended up joining a class where I was the only female. This was back when people did not even know that women were “allowed” to become engineers, and just about everybody who talked to me about it was critical about my “wasting” a seat that a boy could have taken and become an engineer (all except fellow female batch-mates and my parents and a few of their very close friends).

Relatives told me the course would be too tough. One cousin who was studying engineering told me that I would never be able to do “workshop”. And just about everyone told me I was wasting a seat, I was wasting the nation’s money, the taxpayer’s money, because after all I was a woman and I would never take up a job, and even if I could, I would leave it for my “family” later, and for bringing up my kids. I was told again and again that I should quit the seat so that a “deserving” boy could become an engineer instead.

In my class I encountered two species of classmates; one, the silent ones who never said anything, so I never knew whether they were hostile about me or just cowed down by the second species, and two, the hostile ones who reminded me that being a female I was incompetent and also wasting a seat.

Now I can use this post to write about many things that have happened since.

I could write about how many of my engineer classmates went on to sell soap and colas or read balance sheets in banks, careers which possibly don’t need knowledge of Fourier Transforms or resistor color codes. Or I could point out that many chose to be part of the “brain drain” in the days when leaving the country was considered unpatriotic (but of course, now pravasi bharatiyas welcomed back open-armed, because times do change, and society does become more mature and open). Then again, amusingly, some ex-classmates are sending their daughters to IIT coaching classes, and I doubt if they remember how hostile they were towards the female engineers when they were students.

Hey, I could even write about how unfair it felt at “sweet” sixteen to be viewed as a potential housewife (housewives became “homemakers” decades later) and a potential mother and not as someone able to contribute using the brain. It also induced suffocation about my future.

But strangely, it is another angle that strikes me when I look anew at the past.

What strikes me now is that, in all those comments about how I would give up my job when I had a child to bring up, people were clearly recognizing child-rearing as a task that needs intense work and attention.

But no one talked that way about the intense work and attention that goes into tending to humans at the other end of the life curve.

No one ever told me, for example, that I would be wasting national taxpayer money when I quit my job to tend my parents. No one said, you will end up doing so when you are at the peak of your career, young enough to be productive, yet experienced enough to really add value to the field you are in, so everything everyone has invested in you will go waste. No one recognized the elder care work, the role, the criticality of the role.

I wonder why.

Again and again, I am puzzled at how a society that prides itself on its respect for elders and the need for families to rally for their care does not register that if such care has to be given, it has to be planned for, factored into life choices, and so on.

I meet caregiver after caregiver who has abandoned or reduced work when at the peak of their professional career to take on this task, but I do not hear any talk about lost taxpayer money, lost national resources, lost managerial potential because these persons are now performing a different function from what they trained for (or for which they studied in colleges subsidized by taxpayer money). When caregiving costs are computed, the family caregiver (male or female, but usually assumed to be female) is not costed even at the दिहाडी (daily wage rate) of an unskilled laborer, let alone costed at what a paid attendant could have demanded for that work. (This is like the problem faced while looking at the economic value of homemakers). And let us just forget about anyone looking at opportunity costs of caregivers who quit the workforce…

At least, let us find a nice, respectable word like “homemakers” for those taking on a fulltime care role to tend to ailing elders

More seriously, one problem of not recognizing the economic value and opportunity cost is that nothing gets done to find ways to minimize this loss.

Look at how childcare is treated. We have books on just about every aspect of it, heaps of them. Offices and factories are supposed to (and some actually do) have crèches to support mothers who want to work; there are plenty of play-schools that take in very young kids, and while the standards of some are deplorable, at least the attempt is there. And, of course, society accepts the system of travelling multiple-entry visa grandparents who move from one child’s home to another to support the various pregnancies, childbirths, young years. All these are not completely adequate, but they are attempts to help an acknowledged need.

Maybe, if eldercare was as acknowledged and respected we’d have better books available for elders (on coping with practical problems of ageing, like urinary incontinence) and also better books for their caregivers. We might have centers where elders can spend their day in a safe and supportive environment even if they are partly dependent, instead of having only enrichment centers for the healthy and mobile elders. Maybe there would be better schemes to let the supporting family members stay connected with peers and also carry on their careers; things are better today than they were a decade ago when people looking after elders had no option but to quit their careers, but I think there’s a long way to go yet.

Yet, on another note, I am not sure anyone wants to think of these issues. I think even thinking of them is seen as disrespect or negativity towards elders. But denial does not help build a supportive infrastructure that works optimally for everyone concerned.

I cannot imagine how I’d have felt, though, if at the age of 16 I’d been told that I was wasting taxpayer money because I’d end up quitting work when I was a middle-level manager to look after ailing elders.

Back then, I did know that children are born and they bawl for milk and get colic and need potty training and then help with homework and tests, and while I hated those sort of “you will give up work when you have kids” comments, I at least understood what people meant.

On the other hand, I didn’t even know elders could ever need care or support.

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. But Baba was comfortable in his home, and this “duty of son” relocation was shifted week by week by everyone concerned, and when a date was finally fixed, Baba passed away a day before that.

Me, I never really saw Baba when he was unwell. I visited the Delhi 6 home a couple of times in those last years, peeped into his room; the air was a bit stale, the room looked small to me (I was used to large Govt apartments in New Delhi), his Persian books were unreadable squiggles. I would do the Namaste and hang around for a few minutes, not sure what to say, and sensing his discomfort with me, too. No one discussed his health in my presence. I was in my pre-teens then.

There were other elders in the family, too. Old aunts, uncles. I knew them when they were active and bossy; when they became frail, they would stop coming to the functions where I was likely to meet them. If I visited some home with an ailing elder, my only contact would be a quick peep for a quick Namaste into a secluded cheerless room and then I’d be out again. When I would hear of the death after a few weeks or months, it never really hit me. Old people die, no?

The same was true of the society around me. Active elders were seen walking, talking, lecturing, bossing around, joking, playing with grandkids. Other elders…who knew where they were? Not I.

So it was only natural that I never realized what age did to people once they were past that active phase. I had no real need to understand what illness did, or frailty, or dependence, or that final phase of illness and dying and death.

I suspect my education on matters of age and dying would have been different if I’d grown up in a joint family or an extended family or if Baba had actually moved in with us…

The result of my “ignorance is bliss” state of mind was that I never thought about how my parents would be going through that phase and how it would impact them and me and my hubby and son. Oh, in theory I knew they would age and die. But I was both clueless and uncurious about what it could involve.

My mother started talking of her death a few years after my father retired, but I think she was pretty clueless herself. She had not seen ageing either, as all her family members died off when very young. Her statements would be something like You should do what I say. Who knows how long I shall life and you will regret not obeying me after I die and How long will I live anyway? It is just a matter of a few years or even a few months. Can’t you keep me happy for even that much time? (this was twenty years ago, BTW). And of course, the sentences she said day in and day out, I will never be dependent on anyone. I will do all my work right till the day I die.

My father was slightly more clued about death, having spent his childhood in an unshielded environment of a closed community and joint family, but he rarely spoke.

So I continued with my vague impression that death was something that happened and there was this hazy phase before it when “dying” happened, and this phase would go through smoothly and with no major impact on anyone (including the person who happened to die at the end of it) and that I had no need to think or plan. This was, you understand, not a rational assessment of facts, just a vague impression I never bothered to validate or refute.

Then, when I was thirty-eight years old, my father broke his femur. Rather, it broke on its own, without his even falling–a non-traumatic fracture.

This was not my father’s first post-retirement illness; he had suffered from hernia and other problems, but they had been episodic–problem happens, rush to hospital, suffer a week or two of tension and utter dislocation, crawl back to a slightly different, reduced version of “normal”. But my father’s femur fracture was a different type of problem because it rendered him bedridden and on traction and leached his morale. Even so, we around him assumed he would get better and life would be a new “normal” again, and so, as months passed, as he recovered, relapsed, recovered, we always saw normalcy as being just a few months away. It was only after over a year that doubt began setting in.

Almost two years later, in hospital, a few days after he was moved from ICCU to a normal room and was a day away from some invasive tests he did not want, he died suddenly.

Death, finally. Close up it seemed…extreme. Next morning I was at Nigambodh Ghat, near a smoking pyre, performing the gruesome last rites as I stared at his skull and tapped it with his stick as instructed by the pandit. Surreal.

Within a few days of that, my mother, who had somehow held herself together through all this, started showing cracks and it became obvious that she could not live alone, that she was now dependent and mentally unable to handle things. I now faced frailty in a person who had always been stronger than me.

When I look back at these last sixteen years since my father’s fracture, I am amazed at how little I knew of ageing and dying till that femur broke. I’m not an expert now, mind you, just less ignorant.

I realize now that knowledge on ageing is often not visible to youngsters who do not live with ageing elders. Elders who are ailing, frail, dependent, and dying are hidden from view of others, and are not talked about. So people like me who grow up in nuclear families without any exposure to the older generation just don’t know what is entailed in ageing, and we don’t prepare for it. We set up our homes, make our choices in all sorts of matters without factoring in this phase of our parents’ lives, not understanding that we may need to realign our lives for supporting them. We don’t even know what support is or could be. Then, when the need arises, our lives are so set and rigid on paths that don’t take parental dependence into account that the adjustment gets very tricky.

Some time back, a friend was telling me how she expected her parents to always be strong and for her, and how it was a shock for her to realize that they were getting frail and dependent.

Strange, in a way.

I sometimes read articles on how younger people should take care of elders and all that, and I think that if we want a society where it is easy to support elders, the first step may be to ensure that the most important facts of life–ageing, possible dependence, need for support, dying–are talked of openly. That ageing problems are not masked under the “they should remain active and positive” mantra. I think of how assertive my mother was that she would be independent till her dying day, and I wonder how much we mix up wishful thinking with fact. She did not want to face the fact that she could not predict how she would age; I did not want to face the fact that she had no way of knowing.

Our culture treats any discussion on problems (ageing, illness, dependence, dying, death) as negative (shubh shubh bolo, we are told, and hushed immediately), so what is surprising about our inability to cope with it? About our not being able to find the right words, stay connected…

Another incident I remember is of an enthusiastic Buddhist who gave up Buddhism because she was disillusioned that her father died. When I heard of it, I wondered–did this devout Buddhist think her father would live forever? (especially as Buddhism very clearly has stuff on impermanence and death, and plenty of teachings reminding people of it).

And then I think, maybe none of us really expect people close to us to die. I remember how I was sixteen years ago: ignorant and uncurious and unconcerned about such issues, and assuming that my parents will always be active (even though I knew theoretically that they would someday die). I remember how I never quite noticed ill and reclusive elders in an “out of sight out of mind” way and I wonder about the pain and loneliness I never saw and maybe others don’t see either. I also wonder how things would be different if we all were open and matter-of-fact about all this…

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. As an introvert who was (at that time) facing problems with my mother’s initial dementia symptoms (the neurologist had not yet given us a diagnosis in spite of repeated visits), the last thing I wanted was publicity. What would this writer have written about us? Why write about us? I had not harmed her in any way.

My mother was, at that time, coping with her confusion by projecting it on others, by blaming. She had started accusing me of being a murderer and of being evil. She was still active socially, and I feared that someone would mention the book to her and she’d want me to buy it and read it herself. Or maybe someone would lend her a copy. I needed to know what the book contained.

I could not ask around for a copy of the book, because people may tell my mother, and so I waited for a chance to buy the book (in a book exhibition, nestled with other award-winning literary books). I covered the book with newspaper and kept it hidden under the mattress except when I’d closed my room door to read it.

The book was on ageing, old people, and was a barely veiled autographical novel. I kept reading it, a few pages at a time, tense. The main story line was a bunch of incidents from the writer’s life, and the “world” the story was set in was our apartment complex, with incidents chosen from life and people there to supplement that aura of ageing and how it impacts people. Some included incidents depicted the neglect of the elderly by relatives, based on what these elders claimed, or depicted incidents that purportedly happened in homes, away from what the writer could have witnessed.

I wondered where the writer drew her data from. She may have been present at some incidents, but where did she get her “backstory” from, for surely no one had given her the full story?

I understood things better when I met my father in the book.

My father had been mentioned by name. The writer had described her visit to my father, the way she gave him a bouquet, his response. Some mistakes had been made in terms of facts, such as mentioning an operation that had not happened, and crunching the time between the writer’s visit and my father’s death to three days rather than three months or so–I call them mistakes because there was no attempt to mask my parents’ identity, or the identity of the alleged protagonists in the story.

My father was portrayed as this wimpy, defeated man, and the story implied that meeting him had depressed the writer.

The writing was good, of course. But I thought the writer had not gone into depth of character and used my father as a trope for badly-ageing negative persons. I resented it as a daughter, and as a story writer I felt it was unethical to use a shallow representation of a real and identifiable person to boost a story atmosphere. I also felt it was a wrong depiction of what had happened, and showed the bias society has against people who are facing problems…

I had been present for the incident the writer described. The bare facts were right, but a lot of the subtext and tone of the visitors was missing in the description.

Here is what happened, as I remember it.

We got a call from a family friend saying he wanted to visit my father. In the five minutes we had before the guests arrived, we cleared up the living room, located clean cups for tea, placed my father on his wheelchair and wheeled him to the living room. My father was happy that an old friend would be visiting, but also tense about the visit, because here he was, wheelchair-bound and inactive, while this friend was still active, driving a car, meeting people, doing things. In his last visit, this friend had lectured my father about willpower and being active.

I think people who are well do not understand that those not so well may be tense about being “less” in some ways.

The guests arrived. They were awkward, and obviously embarrassed at seeing my father in the wheelchair. The lady (the writer) had accompanied this friend; she gave my father a huge bouquet. We had no vase to place it in, so I lay it on the dining table. A few desultory exchanges ensued. We were asked for, and we gave an update on father’s health. The visitors remained uneasy; maybe they had expected my father to be up and about and chirpy and positive, not wheel-chair bound and quiet. The ex-colleague uttered a few sentences on how my father should stop using the wheelchair and start walking. He talked of how he felt bad seeing my father on a wheelchair. (Did he think my father felt great about it, I remember thinking). My father’s discomfort and disorientation increased; he switched off, then showed a flash of his past interest when the ex-colleague mentioned some book, and then, switched off again.

I remember, quite clearly even across the years, the lightness we felt when the visitors left and we were no longer pushed into a defensive stance by their implicit judgment. We had all felt the heaviness of the visitors’ comments, and my father, helpless as he was, must have particularly felt he had been judged and found wanting. He was a very sensitive man, though he often masked that under the garb of humor. The air was more free after the door closed behind the visitors.

When people who were once peers start moving towards different ends of the “active and independent” spectrum because of health and ageing problems, I think they need new modalities to accept these differences and continue to stay connected in ways that make these differences irrelevant, and builds, instead, on common concerns and interests.

But typically, interactions center on the differences, on the healthier egging the less-healthy to “fight” and “improve”, and the less-healthy justifying their inaction or explaining it. Instead of respecting and accepting the difference in state, and then moving to common areas and having pleasant times, the discrepancy with respect to health status becomes the ground for communication, and hurts and disappointments start floating and congealing. Friends move away, and with an edge of bitterness both ways.

My father had just emerged after being completely bedridden for months because of a hip fracture; he was terrified that he would fall again, fracture his hip again, and have to undergo that awful state of complete immobility for many more months. Yet no one who egged him to walk acknowledged how dark that fear could be, or helped him cope with it, and all people had to offer was “Be positive” and “You won’t fall”, as if they knew the future or could ensure it. In his fear, they saw the possibility that some day they, too, may be afraid, and they hated that. In pushing that thought away, they dismissed my father or scolded him.

All of us did that. I remember that I could imagine his fear, but I lacked ways to help him with that, and I had no idea what to say to him, so I said nothing. I could have at least said, I understand, and maybe he would have been less alone, but it never occurred to me. None of us knew how to provide the right degree of empathy and constructive support. None of us tried hard enough to learn.

Telling others to be positive is so much easier than holding their hands and helping them cross the chasm of their fears.

They teach us a lot of useless stuff in school, but not this. What a pity.

Anyway, back to the novel and its negative depiction of my father. I think the depiction ignored that interactions work both ways, and that the negativity experienced was a mutual one, not just his negativity.

Oh, and BTW, my husband and I merited one sentence in that novel, which reads, बेटी-दामाद इनकी अच्छी देखभाल कर रहे हैं । (The daughter and son-in-law are taking good care of him) Thank you, Ma’am. That’s all I needed in life: your approval, after your disapproval. Really.

I was also left wondering how that novel would have impacted people who were portrayed as persons neglecting parents, having affairs, and so on, because this (to quote the blurb) अनूठा उपन्यास (unusual novel) had so many traceable facts and recognizable characters that whatever story-telling license the writer took (showing people in poor light) may also be seen as fact. What a misuse of the pen! Yet who would dare speak up, for that would be like admitting that you were the person being shown in a poor light, and people would say, there’s no smoke without fire. Does a writer’s right to write an autobiographical novel override her duty to respect the privacy of others?

To look at it another way, the stories we make are the stories of what we think and what we want to think and what we are limited to think about by our own scared natures. The writer used my father to depict her own fears of ageing; I just wish she had been brave enough to see her negativity in that interaction rather than make my father a well-depicted yet cardboard trope. The novel would have been a better one then, perhaps.

Active, visible elders, and inactive, tucked away, hidden elders

This is about some thoughts triggered by a senior citizen event I attended, where the hall was full of articulate, well-dressed, energetic elders (some came with younger relatives), all animated and social. My first response was a general happiness, but that feeling was short-lived as I was swept away almost immediately by a tremendous surge of loss because I thought of my mother, who had been such an intelligent and energetic person, and I wondered how our lives would have been if she had not developed dementia. Some weeks have passed since that function, and I have had time to mull over that experience and my response to it…

As I shared with some online caregiver friends immediately after that incident, I was so swept away by the sense of loss that day that tears prickled my eyes and I had to blink them away. I could not concentrate on watching those senior citizens accept prizes and sing and all that; I could only think of my mother and the past several years. I remembered how she (as my re-examination of past clues shows) had started experiencing the dementia gaps and setback well before the diagnosis, and had started withdrawing, hiding, covering up, raging, suspecting she was going crazy and therefore blaming everyone….trying to view those years as they would have been for her was terrifying.

I left the function early and could not get rid of that horrible pit in my stomach for a few days. I thought I could then understand why so many people have problems understanding that my mother’s problems are genuine; they have seen “normal” ageing, and want to think everyone ages that way, and I wished I could slip back into that comfort of normality but alas…

The sadness I felt for was not just for my mother, it was also for myself, and for everyone who experiences this loss as patients, as family….

I slipped into “what if” thoughts: If my mother hadn’t got dementia, she would have remained the sort of person she had wanted to be. My life wouldn’t have centered around giving to her, and ensuring her well-being. There’d have been a more “normal” me who did not feel so isolated and alienated from the mainstream, who had time and energy to do stuff considered normal. I would not be a person identified with and measured by how happy or not my mother is, and how cared for or not she is. My life wouldn’t be an account book of what I do or don’t do or could do or cannot do for her; I would be there also for I, me, myself. Maybe she’d even have continued making pooris for me once a month as she used to do. Maybe we could have debated philosophy as we used to. Or she would have shared stories of her tyrannical grandfather.

And while I was mourning for all these years which have aged me and will never return…

…I remembered something else.

I remembered something about the days when my mother had been normal, getting older and facing some problems, and how others who were more “normal” wanted her to hide her problems so that they could feel good and positive about ageing and continue to believe age does not cause any deterioration to those who are strong-willed.

One incident…

This happened back when my mother was an active and positive person who had started facing “balance” problems while walking and was determined not to let that make her home-bound or sedentary. Cognitive decline, if any, was mild and not visible to us. My father, on the other hand, had taken his retirement to mean serious retirement, and had reduced his overall activity and social life and walks and so on.

My mother has always been very fond of walking. She was a fast walker. When she was in her mid-fifties, she and I had gone for a short vacation to Nainital and there we were walking down one of those touristy hills and we easily overtook a number of honeymoon couples. Walking with my mother was not for the indolent or faint-hearted; her pace was intimidating, especially when she was doing the walk as “exercise.”

Then she started having balance problems, and her walking alone became dangerous, because her body would sway or list and she would have to grab something so as not to topple. That something she grabbed was just about anything she saw, whether a co-walker or a child or a barbed fence, and so she felt that her walking alone would be silly. I concurred.

We began taking morning and evening walks together in the apartment complex compound, and she would grip my wrist while walking (she refused to let me support her by holding my hand under her elbow; she wanted to control, to grip, because that made her feel safe). So there we would be, two very thin women, one a tall, elderly woman and the other her short daughter, the tall one walking fast, gripping the wrist of the shorter one and the shorter one trying to walk along while also adjusting herself constantly to absorb any weight imbalances.

Our apartment complex was peopled with friends we had known for years, including retired colleagues of my retired father, some of whom I had called “Uncle” since way back. Some people would stop to say >em>Namaste to my mother, and she would lurch, stop, let go of my hand and join her hands into a reply Namaste while I would remain attentive to make sure this changed stance was not going to make her fall (and in the bargain forget to do my own Namaste, which usually earned me a scolding from my mother later).

But many people would avoid us, and I assumed it was out of consideration because they did not want to disturb my mother’s obviously precarious balance. I saw some people hesitate, as if they wanted to say something, and then not say it, and some people would call me aside later and ask me why I did nothing to solve my mother’s problems.

One “Uncle” would, however, often stop us and tell my mother to try and walk without catching me. I explained to him that she had a balance problem, but he would keep saying that she should try, and imply that she was not trying hard enough. I could see that his remarks hurt my mother, who had the caliber of willpower that could beat anyone hollow, and had faced and solved all sorts of severe problems single-handedly at various stages of her life.

She was not rude to him, though. She would only press her lips tight, and say nothing.

One day, this gentleman approached us with the air of someone steeling himself to say something important. This is what he said: Mrs. Kishore, आपको ऐसे चलते हुए देखकर अच्छा नहीं लगता. (It does not feel good seeing you walk like this).

I explained again, that walking was an important exercise and this was the only way she could walk.

He repeated the sentence a few times, then elaborated to the effect that he came down for his walk and seeing her problem depressed him and he wished she would walk on her own, without support, so that he didn’t feel bad. He even said, आप तब नीचे घूमने आइये जब आपकी प्राब्लेम ठीक हो जाए, ऐसे देखना अच्छा नहीं लगता (you come down for a walk after your problem is solved, it does not feel good seeing you like this).

My mother’s face became hard like stone and she gripped my wrist even harder to a point I feared my circulation would stop, and she turned her face away from him and said to me, चलो (let’s go).

I felt dirty, intruded, angry. This was a family friend, my father’s colleague, someone I had known and respected since childhood. He should have been there with us, with my mother, helping her stay and feel normal and active in spite of her problem. That was what she was doing, right—- staying determined, positive, active?

Instead, this man wanted her to be taken away from public view because he did not want to accept that some people face problems as they age, and not all is hunky dory. He had the temerity to tell her that, without possibly sparing a thought of how hurt and betrayed she would feel to hear such things from a “friend”.

This incident occurred ages ago, and I often had to meet this gentleman after this because I continued to live in that apartment complex. My mother and I continued to walk, but we would (without saying so to each other) avoid this person if we could, and he avoided us. Over the years, as my mother’s balance problems worsened, and her cognition problems increased, such intrusive comments increased. People would either tell my mother to show more independence and willpower, or tell me to do something about it, scold her, scold me, or avoid us altogether.

I can imagine how uncomfortable it is for people who are growing older to hear about or see their peers who are facing problems. Probably people who are ageing well and remaining active and hoping to continue to do so want no reminders that their peers may not be faring that well along that age curve. They may, therefore, be tempted to dismiss off people facing problems as people who are not determined enough, positive enough, and they may not want to connect with the less-well people or even see them unless they are “success stories” who have overcome a problem.

But shouldn’t a peer group be supportive of people who are facing problems instead of telling them to get out of sight? Shouldn’t they be matter-of-fact about problems, and accept that some problems remain and don’t vanish? Shouldn’t they embrace all paces of ageing and accept the diversity of ageing experiences?

I sometimes suspect that there is a lot of pressure on people to remain visibly positive and to “age well”. At some level, this boosts the determination to cope with problems and be successful in spite of them. But at another level, this pressure possibly drives away those who don’t match the societal expectations, and forces them into hiding so that they are not seen as a disgrace to proper ageing.

And I wonder…is that set of those cheerful, active elders we see outside a filtered-out set of elders? Are they those elders who are confident and active and can (at least for some hours) hide their problems (if they have any)? Maybe we do not get to see people who have problems which they cannot hide or overcome, people who retain their need to be part of the community but whom the community does not want to see. How many homes have withdrawn, hidden, tucked away elders who have withdrawn because their family or friends have indicated disapproval and implied they do not meet the standard of good ageing?

Thoughts like this make me reconsider my grief at a sense of loss of what could have been, as I start suspecting that what I see outside may not be widespread enough to be “normal”.

As I ponder about my own pending “ageing”, these issues concern me more and more. I have no way of knowing how age will affect me, and while I may do things to stay active and all that, the fact also is that problems happen, and not all can be overcome, and I would like to stay as involved and active as I can without being apologetic about any disabilities or problems I acquire; I would like to remain matter-of-fact rather than twist myself silly trying to hide problems others don’t like seeing.

I wonder, though, how enabling society is about realistic ageing across all spectrums of increasing disability and dependence.

Unwind: Missing the world for the jigsaw shapes

My knowledge of world geography has always been abysmal, so when I saw this 1500 pc jigsaw some months ago I knew I needed education. So what if it was an old world map with astrological signs and names written in Latin and all sorts of interesting pictures? Hey, those pictures are what fascinated me.

After a number of engrossing hours of world-building of the jigsaw type, my geographical knowledge was no better though I had the full picture constructed. I had remained too lost in the individual shapes and colors and missed the world for it.

But hey, that’s what world leaders do all the time, so I guess I’m in elite company.

Optimism, pessimism, and getting stuff done

I’m somewhat wary of self-proclaimed optimists because of their negative views about people they consider pessimists. Now don’t get me wrong, I am not talking of people who have a positive energy and view with regards to life, though they are optimists, too; I am talking of people who keep insisting that they see the glass half-full and are always happy, and who assume that anyone not claiming to be an all-bubbly optimistic is a pessimist. I am talking, possibly, of all those well-built aunts who smacked my back jovially, all 80-kilos force in their cheerful gesture, and told me, “Be Happy!” while I tried not to groan as I twisted myself back into shape.

I have often wondered why optimists cannot see the glass half-full when viewing persons they consider pessimists.

The funniest part is when optimists start blaming others for pulling them down. One would think their optimism would have survived that

The oddity of such externalized blame struck me first around four years ago when a merrily positive soul told me he wanted to run the marathon that year. Now, running a marathon figures in many a wishlist, and often stagnates as a doomed-to-remain-a-wish item. I have it on my 43things list myself, if I remember right. But to meet someone who had a specific target of doing so by the year end was both intriguing and inspiring, and after some initial ooohs and aaahs, I started asking him about the training plan and stuff like that. Oh boy, what a mistake that was. I was labeled as the one pulling him down with my questions and making him look away from his dream and stuff like that, as if my asking him practical questions was the same as saying he cannot do it. (He’s become a pessimist since, and manages to run a few kilometers regularly)

I have noticed this problem several times since then, that self-proclaimed optimists who keep boasting of 20/20 vision re half-full glasses find me negative if I get enthused or impressed about a prospective project and get so charged up that I get involved and ask some question– like, so this organization you want to set up, what is its objective, what services will you provide, how are you going about it, when do you plan to have it ready–whatever. Being accused of pulling people down by asking questions has happened repeatedly to me, and I still am unable to see what is negative about asking for details. Apparently asking questions that remind the bubbling optimists of the impending work and challenges is negative as such.

The Wikipedia page on optimism says (as of today’s version) that :

Optimism is a mental attitude that interprets situations and events as being best (optimized), meaning that in some way for factors that may not be fully comprehended, the present moment is in an optimum state. The concept is typically extended to include the attitude of hope for future conditions unfolding as optimal as well.

I guess if optimism is about finding the current moment optimized, and if that current moment is a nice fluffy dream, then disturbing questions (even if related to actions necessary for achieving a dream) are negative. Yet, perhaps it is stupid of me (or perhaps it is ‘optimistic’), but I keep hoping the next person I ask questions will see them positively.

People like me never learn

But talking of questions and getting things done, another characteristic I’ve noticed in self-proclaimed optimists is their confidence that they will achieve stuff and are better equipped to do so than pessimists. That, of course, is core to the concept of being optimistic, but I’m not sure it is true.

Okay, so being optimistic is known to have definite health benefits. You live longer, with fewer diseases, and you live happier. What’s that got to do with doing things?

I’ve looked around me, and so far the only correlation I’ve found between personal characteristics and getting things done is this one thing: people who get things done are people who act. They may act because they are “positive” about change, or because they are disheartened about the current situation, or just out of some habit, but taking some action seems to be an integral part of doing stuff

After yet another incident recently when I found myself pondering about all things positive, I tried to define my own approach to life. I don’t describe myself as either an optimist or a pessimist; I am gung-ho about some things and down-in-the-dump about others, and actually far from consistent overall. Even across a day, I swing between all-chirpy energy and I-can’t-do-this-any-more dips.

And if you give me the glass-that-reveals-the-observer’s-true-nature, I see it as being half-full and half-empty, which is something optimists call pessimism (because I saw the half-empty part, see?).

BTW, I note that while optimists are pessimistic about the future of non-optimists and are often uncomfortable with them, pessimists are not that pessimistic about optimists and take them in their stride. Is there a lesson somewhere in that?

Anyway, back to work. Or rather, how people get work done. I was reading a book, Making Ideas Happen, by Scott Belsky, and while momentum and flow and energy were discussed, sheer glass-half-full was not mentioned and the index at the back contained no entry on either optimism or pessimism.

Nor do I find too many of the top achievers rant/ boast about being contentedly happy with the current situation and seeing glasses half-full; they are usually more vocal about momentum, positive energy and enthusiasm taking risks, commitment, involvement, energy, drive, the relentless movement forward. Some even talk of killing ideas to make way for other ideas, of the value of skeptics. Maybe I am being selective in what I remember…

So yeah, I don’t think it is some sort of foregone conclusion that optimists get more work done. From what I’ve read, the jury is out on that. Of course, they may be happier about not getting work done than your run-of-the-mill pessimist…

Which to me means that if you want to get stuff done, don’t bother about being optimistic or pessimistic: just remember to act.

…and while optimism definitely sounds a happy way to live, I am rather wary of a state that seems so fragile that it cannot handle one cold sigh of a pessimist nearby without resorting to blaming the pessimist or feeling compelled to transform the pessimist into an optimist (a losing battle there). It doesn’t seem to me like such optimism is a stable, happy situation.

As an aside, I did a couple of those questionnaires to figure out whether I am alleged an optimist or a pessimist, and I came out as highly optimistic in one and a pessimistic in another, which probably explains the confused nature of the above post

[Note: Dear self-proclaimed optimists, hope your happy-go-lucky mindset allows you to see a glass full-full in the post above.]

Of Mom, and a story about dutiful worlds

Centuries ago (okay, around fourteen years ago), after my father’s death, my mother was convinced that my sole task in life should now be keeping her happy. She wanted company. All the time. She would allow me toilet and meal breaks and meal-cooking breaks, and I could take off time when she was resting, but if I dared say I had to go out for work, I’d be subjected to a lecture on duty towards her, and on my greed to want to work.

This was back when no neurologist we consulted had bothered to tell us about dementia or even cognitive decline, though my mother had complained to them about memory loss. We had no idea that she was having problems staying oriented and in understanding things, let alone changing her way of thinking. We have no idea that she probably wanted familiar faces around her all the time because of those (unstated) problems.

Possibily because she grew up in a rather well-to-do family, my mother had always believed that anyone who worked for money was greedy. That people who worked in jobs did so only for money, which was a filthy thing to do. She had a phrase she often used to express the “greed” of persons who worked hard in paying jobs: निन्यानबे का फेर (ninyaanbe ka pher, OR, the trap of ninety-nine).

It’s an interesting concept. Basically, someone who has 99 rupees will want to earn one more rupee to make it a round 100, and that wanting a bit more to round it off neatly will keep the person on the grind. A bit like Tolstoy’s How much land does a man need.

After my father’s death, my mother began commenting on my being in the निन्यानबे का फेर trap very frequently.

Being told day in and day out that I was greedy because I was going off for a business meeting was bugging, to say the least. My mood would not improve when I returned home tired and found her standing there, hands on hips, face stern, talking about how greed can only result in fatigue and that I deserved this fatigue. She just wouldn’t understand that people worked because they must, and that there was also nothing wrong about earning money.

I did not think she would ever understand that money had to be earned for a living, but I did manage to tell her a story about greed and duty, and in spite of her (obvious in hindsight) early dementia, she understood the story so well she never brought up the word “greed” again.

This is what I did. My mother was talking about the family doctor and how she’d like him to visit for some problem, and I asked her if she thought he was a dutiful son. (The doctor’s family lived in our neighborhood). My mother nodded. I then asked her whether the doctor shouldn’t be spending more time with his mother, and Mom nodded. I then pointed out that in such a case, he may stop practicing because he wanted to be a dutiful son. He may therefore not make the house-call she wanted.

“How can he do that!” my mother said. “He’s a doctor. It is his duty to come.”

“Maybe he is not greedy for money,” I said.

“But he’s a doctor!”

“He’s also a son,” I pointed out. “He has a duty to give his mother company, and he may not be greedy enough for this निन्यानबे का फेर.”

“No, no, that does not apply to doctors.”

“Okay, so what about the chemist? Do you think he’s greedy to run a shop? You know these shopkeepers, always wanting money and profits instead of doing seva for their parents…”

“People just can’t stop working just like that to sit with their mothers,” she said. “What will we do then?”

“It’s the same for me,” I said. “The work I do is important and I can’t just stop it.”

She started laughing. “The work you do is not important. All you do is sit at your computer all day. That’s not real work. Doctors and hospitals must continue to work.”

Okay, so real work was hard labor, farming, and so on.

“What about people who work in offices and banks? Are they greedy? Shouldn’t they give up work and do seva for their parents instead? I’m sure many of them have old parents who want company.”

“Maybe,” said my mother, but I could see she was getting uncomfortable.

“And school teachers can also stop teaching and focus on their own children instead,” I said, pushing for the advantage (my mother had often complained that I was not spending enough time with my son).

“Maybe,” she said.

“And of course, there’s our milkman, and you know his mother does not keep well,” I asked. “He should he stop being greedy and supplying us milk.”

“Yes, someone else can do it,” she said, though she did not look confident.

“I don’t know about that. Everyone has parents or other elders in the family. I’m not sure we can find someone who doesn’t have any duty to his or her elders…”

I let the conversation stop there, giving it time to percolate, and I hinted at this once again after a few days.

Given that she was already facing cognitive impairment, the fact that she stopped her निन्यानबे का फेर complaint after this was quite a remarkable transformation (She did continue to complain I was not spending enough time with her, mainly because she would forget that I had spent time with her).

I remember this story sometimes when I encounter persons who assume that family members should naturally surrender their careers if there is an elder at home who needs help, especially if that family member is a female (howsoever well qualified and expert she is in her professional field) and the family is not downright poor.

I have tried, on occasion, to make people imagine a world where everyone gives up their career to take care of an elder at home out of love and respect for the fact that this elder was the one who brought them up. No doctors, no surgeons, no medicines. Empty emergency room, and anyway the ambulance driver is at home, looking after his uncle. We suddenly realize that even sabjiwalas have parents, and so does the bai who cleans the vessels and the tuition teacher who is helping the grandchildren prepare for the CA exam. Even Prime Ministers, policemen, judges and telephone linesmen have elderly relatives or spouses. And we don’t want them to be so greedy as to continue a career when they could be at home holding the hands of an ailing spouse. We want our country led by people with better values, don’t we? Only, which house will we be living in? Even building contractors and architects have parents.

There’s a limit to how much the world can function just based on work done by orphans, you know

Or perhaps we should accept that duty comes in multiple shades, and our parents are not the only ones we have a duty towards. We have a duty towards many other things, including our chosen professions.