In the years that followed, I learnt to avoid dogs and also to act nonchalant. I even laughed when others looked scared, and would manage to look charmed and pat an allegedly cute dog. I had realized by then that people who knew you were scared of dogs took it as their sacred duty to bring dogs closer to you to help you get over such irrational behavior and “prove” that dogs are cute, so I was safer if I hid my fear.

Pretending one is not scared of dogs becomes easier when you are older

But about a year ago, I was tested. And how! This dog dashed towards me, used me as a climbing rack and stood with its paws on my shoulder, its grinning, drooling face just inches from mine, while its owner smiled at a distance. I stood still. I did not panic. I did not scream. I looked back at the dog calmly, though I did wonder about how hurtful rabies injections could be and I was thanking my luck that I was wearing a thick jacket and its claws had not penetrated that. I wondered what it would be like to have my face bitten off.

Later, as people complimented me on my calm demeanor, especially my husband who knew of my dog problems, I took all the credit of having transformed myself. I mentioned my daily Buddhist “metta” meditation that surely played a role in my staying calm. I extrapolated my imagination about my peace with nature and saw myself standing in a garden where deer (or at least squirrels) would nibble grass I held out, and birds (light-weight ones) would perch on my shoulders and chirp their sweet songs.

Then one day my husband decided to work through our childhood albums and scan every photograph for posterity. And he found this one.

Now I can’t deny that I’m the less-than-one-year-old kid in the picture, but I’m convinced that the four-legged creature in this is a friendly neighborhood goat and not a mangy stray street dog the husband claims it is. I’m sure if you are my friend you will agree with me.

I’m one, and I always get totally incredulous reactions when someone says, “Watch this program,” and proceeds to give me a channel name and time and all that, and I say, I don’t have a TV connection, so sorry, I won’t be able to watch the program.

They don’t believe me, of course. I’m not dressed in rags, and even the maidservants watch TV, so how can I not have a TV connection? The conversation goes something like this:

“I don’t watch TV,” I say.

“But you must be watching it!” (says the neighbor/ relative/ friend/ acquaintance) “Otherwise what do you do!”

“There are other ways of spending time,” I point out, but before I can elaborate, they cut in–

“What about cricket matches?”

“I’m not a cricket fan,” I confess, which is a heresy if there were one. An Indian and not a cricket fan? Cancel her citizenship.

“You must watch cricket! I watch it all day long when there’s a match.”

“That’s exactly why I don’t watch matches,” I say. “They take all day.”

“And what about the news?”

“I read the newspapers,” I say. “If there’s something really big, anyway someone or the other sends an SMS or email and I check it online at a newspaper site, but that is rare.”

“But how can you not watch the news! Papa has it on all evening.”

“That’s why,” I say.

“And serials, what about serials?” (flabbergasted look)

“I don’t have a cable connection,” I say. “I am not interested.”

“You must get a cable connection! It is not expensive. It is really worth it.”

“Not for me,” I say.

“But then what do you do all day! How do you spend the evening! What can you do without TV! Don’t you watch any movies? What about relaxing?”

I explain that I have a TV and a DVD player, and once a week or so, in a scheduled slot, I watch a movie of my choice, and that’s it. Some weeks, it goes up to two movies. That’s, like between 2 to 4.5 hours of watching time a week.

“But I mean,” the neighbor continues, “Why? How do you spend the evening!”

Fact is, I have seen what a TV does, at least to me. You put it on, determined you will watch only one program, but that is not so nice, so there is channel surfing, and then another program, and then some news looping, and the TV remains on. And sure enough, that is how one ends up spending the evening.

As for how I spend the time when I don’t watch TV, here’s how: there are lots of things one can do at home instead, and my favorite are books and jigsaws. If I can manage to go out, then I enjoy the deliciously deserted Cubbon park when there’s a one-day match, and in place of evening serials, I get myself some evening life at Sankhey tank…

(Above: indicative pictures of some activities on which I waste the time I should have spent watching TV).

So no, I don’t need a no-TV day. Every day is a no-TV day for me. And I’m not living in an isolated jungle. It is possible to live without a TV connection and not be an absolute savage, really(or at least I assume I am not a savage).

Yet funnily, after all that long conversation, next time I meet that same person, we go through that same conversation. Apparently most people think I should have used the interim time to become a normal human being, but alas!

It’s not that I’m a masochist and indulging in self-torture by not watching TV. To confess, I have now become addicted to No-TV

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?

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…

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.

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.

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.

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)

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]

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.