Dementia prevalence, life expectancy, population pyramids, and playing around with graphs and scattered numbers; also, some sundry thoughts

I recently chanced on a newspaper article lauding Bollywood for spreading awareness on “rare” diseases, lumping in this so-called “rare” category genuinely rare diseases like progeria with widely prevalent problems like Alzheimer’s Disease. And I thought, maybe this reporter did not know about Alzheimer’s before watching “Black”, but surely we cannot call a disease rare just because we may not have heard of it!

See, poor awareness about a disease/ syndrome is not the same as low prevalence. A disease may be occurring often and remaining undiagnosed, or perhaps people do not talk about the diagnosis because there is a stigma attached to it; that does not make the disease “rare”, though awareness definitely needs to be spread.

There’s a tragedy happening when a commonly prevalent disease remains undiagnosed because of poor awareness. We add to that tragedy if we call the disease rare, because to call it “rare” diminishes alertness about a disease. Most of us may read an article on a rare disease with curiosity, but assume it is exotic and only something very few get (always “others”, never we or our close ones). Labeling something rare seems (to me) counterproductive to awareness drives.

The newspaper report I mention above started me in a rather disjointed gathering of diverse data and numbers that I have not yet managed to organize mentally, but hey, this is a blog, not a paper, so here goes…

Let’s first knock off the bundling of progeria and Alzheimer’s into one group. Wikipedia’s page on progeria informs me that there are 80 cases worldwide for progeria (1 per 8 million live births). On the other hand, the WHO and ADI report of 2012 (Dementia: A Public Health Priority) estimates dementia cases worldwide as 35.6 million (35,600,000) which is 0.5% of the world population, and most of these cases are either pure Alzheimer’s or mixed dementias (that include Alzheimer’s).

Also, on what is “rare” as a disease, here are some definitions (from this site )

• A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
• A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

I hope that finishes off my explanation of the error in using the “rare” label for dementia or Alzheimer’s.

Onwards, then, to other thoughts on numbers and stuff.

Tiny digression: The problem with numbers is that they often don’t hit as hard as actually knowing someone with a disease. A long string of zeroes at the end to a prevalence number doesn’t often make the number’s vastness hit emotionally quite as much , don’t have quite a same impact on us emotionally as an anecdote of an uncle of a cousin’s brother-in-law’s friend’s sister. An admission: Take the well-known story about how the man bankrupted a King of everything by asking for rice (wheat, if you prefer) grains on the chessboard to be doubled for every square. (Wikipedia explanation here) I admit that howsoever many times I try, I fail to mentally grasp the sheer exponentiation of the numbers in terms of the growing mound of wheat/ rice grains for each subsequent square. Higher than Mount Everest! Oh heck, I cannot truly imagine Mount Everest either.

I may not be alone in my emotional limitation in imagining large numbers. I’ve read that this related to how our brains are wired; maybe we didn’t have to cope with neighborhoods having 35 million tigers ready to pounce on us. Or if we did, we didn’t stop to count them before we sprinted to save our lives

So I think that expecting people to grasp the impact of something by quoting large numbers is not the same as finding ways to make the danger hit viscerally…The former is for policy makers, the latter for how I view people around me and also my choices related to the risk factors of a disease.

Ending the digression, and returning to dementia….

First, the impression of many persons in India that dementia and Alzheimer’s do not happen much in India. The Dementia India Report 2010 estimated 37 lakhs (3.7 million) cases in India (the population of India is around 1.2 billion); this puts dementia cases at a rather low-sounding 0.31%. Compare this to USA, where, in a population of around 312 million people (source: Wikipedia), dementia estimates are around 5.4 million (source: alz.org.), a much higher percentage of 1.73%. To many persons, these figures provide a smugness that we in India are relatively safe from dementia, and I’ve heard people credit this to diverse reasons like our eating haldi (turmeric), having a good “culture”, caring for elders, having joint families, having some genetic protection, whatever.

Broad numbers, seen without understanding the context, can mislead, though.

Now let’s see how our view of the situation changes once we add some more data to the mix: life expectancy in various countries. (Wikipedia page here). Life expectancies are easy to glance at using this image above. (The image from Wikimedia Commons, kindly released by its creator under a Creative Commons Attribution-Share Alike 3.0 Unported license). The wikipedia page informs us that in India the average life expectancy is 64.7 years for someone born today (63.2 for males, 66.4 for females). Compare this with life expectancy of richer, “developed” countries like USA; the USA life expectancy is 78.2 years for someone born today (75.6 for males, 80.8 for females).

Combine this information with some information from the WHO report on dementia which explains that only between 2 to 10% of dementia occurs in people less than 65 years, and the bulk of the cases occur in people over 65 years of age. (The Report, Dementia: A Public Health Priority can be downloaded from this link). What’s more, as people grow older, the chances of their developing dementia increase rapidly (prevalence is said to double with every five years increase in age after the age of 65).

With all these additional pieces of information, the low figures from India start getting another possible explanation: perhaps many Indians die before they can get dementia. And even if there are differences in incidence across countries, these may not be as dramatic as people expect (hope?) they are. There is also the aspect of under-reporting/under-detection of dementia.

I don’t think that we in India can continue to feel smug about our current lower prevalence rate…

Now consider this: as a nation improves its health initiatives, life expectancy goes up. Here, play around at Gapminder graphs by selecting life expectancy and moving the year slider and seeing how the expectancy has kept going up in all countries around the world over the years. I expect that will continue (and I am sure we all want that) and that, over more years, people will start living longer in India. And as they live longer, their chance of getting dementia will go up, and the illnesses that pose threats (causing disability and death) will change.

An interesting understanding of how income of a country matters in the way people there live and die can be seen by looking at how the profile of diseases that people suffer from also change as the nation’s income changes..

Here, for example, are the WHO tables on ’causes of death’ in 2008, categorized by “income” of the country. We can see how the causes change with the income of the country. As nations manage to reduce tragedies like infant mortality, deaths from diarrhea and other infectious diseases, other diseases rear their head and become matters of concern.

• Low income countries: Lower respiratory infections (11.3%), Diarrhoeal diseases(8.2%), HIV/AIDS (7.8%), Ischaemic heart disease(6.1%), Malaria (5.2%), Stroke and other cerebrovascular disease 4.9%), Tuberculosis(4.3%), Prematurity and low birth weight(3.2%) Birth asphyxia and birth trauma(2.9%), Neonatal infections (2.6%)
• Middle income countries: Ischaemic heart disease(13.7%), Stroke and other cerebrovascular disease(12.8%), Chronic obstructive pulmonary disease(7.2%), Lower respiratory infections (5.4%), Diarrhoeal diseases (4.4%), HIV/AIDS (2.7%), Road traffic accidents (2.4%), Tuberculosis (2.4%), Diabetes mellitus (2.3%), Hypertensive heart disease (2.2%)
• High income countries: Ischaemic heart disease (15.6%), Stroke and other cerebrovascular disease (8.7%), Trachea, bronchus, lung cancers (5.9%), Alzheimer and other dementias(4.1%), Lower respiratory infections (3.8%), Chronic obstructive pulmonary disease (3.5%), Colon and rectum cancers (3.3%), Diabetes mellitus (2.6%), Hypertensive heart disease (2.3%), Breast cancer (1.9%)

This further strengthens my view that we Indians should not feel smug about lower dementia prevalence rates in India yet; I think this “we don’t get dementia” comfort zone is an illusion…

Now, onwards to another set of concepts we increasingly read about: the “greying” of India. This is clearly a concern for anyone working in areas of senior care and senior health and senior abuse, and I often come across articles on numbers of how the ageing population will double or triple or whatever by year X or Y, often supplemented with numbers with strings of zeroes.

I am not sure how much these numbers hit us in ways that we remember. I think these numbers don’t fully convey the challenge awaiting us.

Just looking at the number of seniors (and how they increase over years) does not convey the gravity of the challenges ahead. Of course, we want more seniors to be there (and I hope to remain alive and be one of them). The questions are related to the quality of life of these added years and more seniors, and the structure of society and its ability to look after them.

A graphic way of considering the ageing situation and how it impacts entire societies is looking at a “population pyramid” which depicts how a population divided between various age groups (figure courtesy Wikipedia uploads; the related article is available here).

This sort of pyramid may take different shapes depending on various situations; some examples of classic shapes of the pyramid, as available in Wikipedia uploads, are shown here.

It can be pretty interesting to see how this population pyramid is expected to change over the years (or has changed over the years) for various countries. Here, if you like some fun, go to this Census site that allows you to see multiple representations. Select “population pyramid graph” from the drop down “Select Report” (it’s the last option). Select “India” from the “select country” dropdown, and then select some “year” and click the button “submit”; I suggest trying years across a range, such as 1995, 2012, 2035…or whatever hits your fancy. Note how the distribution of age groups across the population changes over the years. Have a look, too, at the population pyramid graph of some developed country, too, say Norway 2050.

Now combine this way of viewing a population with another concept: that of an economic factor called dependency ratio. Essentially, this looks at the proportion of the section of the population that is likely to be dependent and the section of the population that will support this section. The implication is that if a population has many old persons (who are dependent) and children (again a dependent section) compared to people in the “productive years”, the society will face a challenge in being able to support the dependent sections of the population while also trying to remain economically prosperous.

It is obvious, too, that it is not enough to have health schemes and policy frameworks such that people reach riper ages; older people need to remain healthy and productive and happy to the extent possible. There also need to be systems to support those who need support without soaking up all the energies of the immediate family and friends. Only then can society still have enough persons free to remain productive and prosperous. If everyone is busy looking after elders and kids, who remains available to provide services or produce goods, run administration, manage infrastructure, handle the country, do research, qualify for various professions, and all that?

(An aside: a quote from the WHO report: By 2050 people aged 60 and over will account for 22% of the world’s population, four-fifths living in Africa, Asia or Latin America.)

Okay, so now, back to dementia.

Most reports focus on the total numbers of persons with dementia in a country, stuff that is useful for policy makers allocating resources. For individuals, though, a more emotionally charged aspect is: what is the possibility/ probability for the individual and persons around that individual to be affected by dementia? Or, the possibility that the individual will have to provide care for someone with dementia. That elderly person I know, will she develop dementia? What about me? Numbers like 37 lakhs (or a doubling of that) may not impinge on their minds much as statements on the incidence of dementia as found with age, or on the impact of dementia in terms of disability and early death.

Incidence is not really well understood across countries. Studies throw up different figures, and have not been done in many locations. Dementia prevalence and projection numbers depend on combining eligible studies and on consensus figures of experts, along with demographics, changes expected across years, and plenty of assumptions. There’s a lot of scope for variation, not just between countries and genetic profiles, but also because incidence will change depending on how well people control (or slip on) risk factors, such as cardiovascular risk factors and others. Even so, available tidbits confirm to me that dementia is something to be concerned about at a personal level for any of us who want to age well. And that suitable policies and support for dementia are important to ensure that dementia patients and their caregivers be supported.

My mother had dementia. For well over a decade of my life, as I tried to support her (sometimes succeeding, sometimes only making things worse), I had plenty of first-hand experience of the challenges that dementia and its care bring to patients and their families. But when I am discussing this topic here, I am not thinking of myself as an ex-caregiver; what I am expressing are thoughts that would apply even if I had no prior experience of dementia.

Take a person who has never actually seen dementia up close. What sort of information would make that person pause to think whether dementia is a concern area? Or affect life choices in terms of risk factor mitigation or planning for future care of elders in the family? Here are some random sentences from published reports that, I think, would help the person understand and consider dementia as a possible concern area:

• Compared to other chronic medical conditions (heart diseases, cancer and stroke), AD is the fourth leading cause of death in the Asia Pacific region (quote from Dementia India Report 2010)
• According to different estimates, between 2% and 10% of all cases of dementia start before the age of 65. The prevalence doubles with every five-year increment in age after 65. (WHO report: Dementia: A Public Health Priority)
• Dementia is one of the major causes of disability in later life. It accounts for 11.9% of the years lived with disability due to a noncommunicable disease. It is the leading cause of dependency (i.e. need for care) and disability among older persons in both high-income countries and LMIC. (WHO report: Dementia: A Public Health Priority)
• One in eight people aged 65 and older (13 percent) has Alzheimer’s disease. Nearly half of people aged 85 and older (43 percent) have Alzheimer’s disease. (Alzheimer’s Report 2011, USA).
• Alzheimer’s disease is the sixth-leading cause of death across all ages in the United States. It is the fifth-leading cause of death for those aged 65 and older. (. (Alzheimer’s Report 2011, USA).
• One In Seven Americans Over Age 70 Has Dementia (Report of a study, quoted here: http://www.sciencedaily.com/releases/2007/10/071030112105.htm)

Pause, re-read these. For example, One in eight persons aged 65 and older has Alzheimer’s. Ouch!

When I look around myself, I find enough persons over 65 years,over 70 years, and I know of persons who are on their way to celebrating their 85th birthday. I am sure all of you know dozens of people in these age groups. Think of the faces of these persons who you meet and know yourself, or who you hear about as parents or grandparents of friends and acquaintances. Think of the incidence figures I mention above, and see how they hit harder now.

Remember, too, that poor awareness exacerbates the tragedy, because dementia remains unrecognized.

If you meet these persons with dementia, you may not figure out the nature of the problem in your interactions. So, well-meaning though you are, you may end up talking in ways that hurt or stress these persons. You may even believe some critical comments they make about their family members without knowing these are driven by poor memory and delusions. (It is normal and acceptable to criticize children and call them greedy and abusers and believe that elders are being mistreated, because isn’t that what all soap operas tell us?)

And this dementia may even be unrecognized by the families till it is in a really advanced stage, or not even then. Family members may get frustrated because this elder is acting strangely or wandering, and they don’t know how to handle it or what to expect. They don’t realize how this will require an increasing amount of adjustments around the elders. In spite of all the love and respect they have, and the hard work they may be willing to do for these seniors, they may end up doing things that are ineffective, or even make the situation worse.

Spreading awareness about dementia aims to avoid such human costs to patients and persons around them…

These are my scattered and initial ponderings. Prevalence or incidence of dementia, and how the incidence of dementia can impact people and society, and how it can be changed by addressing risk factors is just too vast a topic, an entire field of study by itself. I am definitely nowhere near getting even a perspective of the problem, regardless of my attempts to pore over various published reports.

But I have pored over enough to acknowledge that dementia and its care are definitely areas of concern. This blog post and its scattered data presentation was prompted by what I saw as an oversimplification and misrepresentation of a situation. Perhaps later I will muster up energy to read up and learn about related issues like disability, morbidity, and mortality of various diseases, and their various underlying assumptions….

Just one more small aside as I close…

I read an interview somewhere where someone said that people would not be so dismissive of dementia if this disease was hitting younger people. This statement struck me as a very acute observation. Possibly diseases associated with elderly, with ageing, seem less urgent to solve. In spite of our cultural respect for white-haired wisdom of elders whom we respect, we perhaps are okay with them to fade out, and to face problems well beyond normal ageing problems. We say, anyway they are old. But if we do not die off before that (and who wants to die!), we will get old, too. We will then be at the receiving end of this indifference to diseases that affect the elderly more than they affect the younger people. We may not be too happy with such indifference in the twilight years of our own lives.

That’s something worth pondering over, no?

Oh, and I would love to hear what you think about this.

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Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)

Last week, a neighbor who had been reading my Dementia Hindi website said, “I did not know this could also be due to vascular problems” (“mujhe nahin pataa tha ki yeh naadi sambandhee bhi ho sakta hai”). Her husband has hypertension, and they are not always careful about it; she was obviously shocked at the thought that neglected blood pressure problems could be connected in any way to the sort of symptoms she had seen in my mother. Dementia, hitherto a name this neighbor could barely pronounce, had become a relevant topic now.

I’d been tense watching this neighbor read the web page (the sort of tension a parent feels when a child is onstage). She had nodded at times, frowned at times, even muttered to herself. Her detailed questions after she finished reading the page showed that she was genuinely curious and concerned. In the course of my answers I happened to mention that sometimes head injuries can cause dementia, and again I saw the info-byte hit her hard; I suspect she’ll be more particular about family members wearing helmets, too.

Her concern set me thinking.

A lot of people think dementia is something that happens to others (not to them). They do not know how close it can hit. More important, they do not know that some health or safety aspects they are currently neglecting could increase their chances of dementia.

An additional problem is the confusion between the two words, “dementia” and “Alzheimer’s”. Much of dementia awareness is woven with the word “Alzheimer’s Disease”, and many dementia support organizations work under the umbrella name of Alzheimer’s. To laypersons, these terms seem interchangeable. And because “Alzheimer’s” seems an alien name, imported and “foreign”, many people are dismissive of it, and are also dismissive of dementia.

Such erroneous interchangeability causes weird misrepresentations. For example, one newspaper may claim that India has 3.7 million dementia cases but another newspaper, based on the same expert interview, may say India had 3.7 million Alzheimer’s cases. Given that Alzheimer’s is only one of the diseases that cause dementia, common sense shows that both statements cannot be true. Yet once published, the article stands as such, uncorrected, perpetually misleading.

I’ve always been concerned about this confusion between dementia and Alzheimer’s and this submersion of dementia under the word Alzheimer’s. I have many reasons for this concern. My neighbor’s facial expression as she registered the existence of vascular dementia reminded me that I’ve been planning to write about this topic someday. Meanwhile, if my webpage helps this one family become more alert about hypertension and adopt suitable mechanisms to control it, that would be some value for the effort I put in

But first, just in case you don’t know the relationship between dementia and Alzheimer’s, here’s a video I made to explain it.

And here is some information on common subtypes of dementia quoted from the Dementia India Report 2010. As we can see, if we say India has an estimated 37 lakh dementia cases, then we can also say that India has an estimated 7.4 to 10.1 lakh vascular dementia cases.

Common subtypes of irreversible dementia (Table 1.1 of Dementia India Report 2010)

Dementia subtype	Early, characteristic symptoms	Neuropathology	Proportion of dementia cases
Alzheimer’s disease	Impaired memory, apathy and depression, Gradual onset	Cortical amyloid plaques and neuro-fibrillary tangles	50-75%
Vascular dementia	Similar to AD, but memory less affected, and mood fluctuations more prominent, Physical frailty, Stepwise progression	Cerebro-vascular disease Single infracts in critical regions, or more diffuse multi-infarct disease	20-30%
Dementia with Lewy Bodies (DLB)	Marked fluctuation in cognitive ability, Visual hallucinations, Parkinsonism (tremor and rigidity)	Cortical Lewy bodies(alpha-synuclein)	<5%
Frontotemporal dementia (FTD)	Personality changes, Mood changes, Disinhibition, Language difficulties	No single pathology –damage limited to frontal and temporal lobes	5-10%

Now over to some incidents and some concerns.

My mother was given a diagnosis of dementia but the doctors had clearly told me it was not Alzheimer’s, and I always mention this when I talk about my mother. After saying “my mother has dementia”, I would add, “my mother’s dementia is not because of Alzheimer’s.” Yet, many people keep referring to my mother as an Alzheimer’s patient. I am not talking only of laypersons; even many of the volunteers whom I have repeatedly told that my mother’s dementia is not Alzheimer’s have introduced me to others/ referred to me as someone whose mother “has Alzheimer’s.” I am very sure that these persons fully well know the relationship between the words dementia and Alzheimer’s and that they explain it carefully and correctly to an audience when taking awareness programs on dementia. Yet when they are not being alert, they use the terms interchangeably…

Once, when I was working with someone on a dementia awareness document, I pointed out a place where this person had written Alzheimer’s instead of dementia (I think it was on the overall stats in India); while correcting the slide this person shrugged and had a pained, irritated expression as if I was being unnecessarily nitpicky. On another similar occasion, one person actually told me, what difference does it make, people know the word Alzheimer’s through our awareness programs, so why say dementia and confuse them?

According to me, it’s simple: saying Alzheimer’s Disease is wrong and misleading if what we mean is dementia.

Frankly, I it bothers me when the press misreports and this misreporting does not get noticed by/ concern other volunteers (at least, they do not get as worried as I do). I get worried about the lower coverage of dementias which are not caused by Alzheimer’s Disease. And I get worried if professionals show indifference regarding the interchangeable way the two words are used by others. Or if they themselves do so. I’ve been thinking of doing a series of blog entries on this topic, but as I’m not sure when I’ll get around to doing this, I’ll do a warm-up blog entry today.

One concern I have is that by talking of Alzheimer’s instead of dementia we reduce public awareness/ visibility of other causes of dementia. So laypersons do not register that vascular problems could end up causing dementia, that head injuries could cause dementia, that many Parkinson’s patients may develop dementia, that there are many other medical situations that could cause this bunch of symptoms collectively called dementia. This means that people are not alert about other causes, they may not take as many precautions as they would have (had they known), and they may not seek help in time.

A lot of newspaper and magazine talk on the availability of treatments, cures, preventions again center around Alzheimer’s Disease. People assume that research funding on Alzheimer’s means that there will be no dementia type of problem once the Alzheimer’s mystery is solved and the disease is tamed (can be prevented, can be cured). They do not realize that many other diseases remain unresearched, untreated, uncured, and that people will continue to get dementia because of these diseases even if there is no Alzheimer’s Disease.

Then, much of dementia awareness focuses on memory loss, which is a prominent initial symptom in Alzheimer’s Disease. Some people even treat “memory loss” as equivalent of “dementia.” As it happens, there are some types of dementia where other symptoms are more prominent and worrisome than memory loss.

For example, take fronto-temporal dementia which is 5-10 % of the dementia cases in India as per the table above. Again, as per the table quoted above, the Dementia India Report 2010 gives the symptoms for this form of dementia as “Personality changes, Mood changes, Disinhibition, Language difficulties.” Someone expecting only memory loss to indicate dementia is likely to see these symptoms as a psychiatric problem or even someone whose character has gone “bad” (after all, these symptoms include disinhibition, which means some patients may be doing stuff like stripping or making crude sexual gestures and grabbing at people). Here’s a quote from the site of The Association for Frontotemporal Degeneration ( http://www.theaftd.org/) on the low awareness of this form of dementia:

Frontotemporal degeneration is one of the most common dementias in the younger population and is estimated to represent 10%-20% of all dementia cases. Still, most people, even many health professionals, have never heard of it.. (From http://www.theaftd.org/newly-diagnosed/ftd-basics)

So this is my worry: I am concerned about the wrapping together of dementia and Alzheimer’s Disease in so many awareness drives and other forums, because this can end up being problematic to persons suffering from other forms of dementia (25-50% of the cases, a non-trivial number). Delayed diagnosis or even missed diagnosis is one such unfortunate consequence.

Another aspect that hits me hard is the exclusion of other types of dementia in various caregiver study/ support forums. I’ve seen surveys sometimes being termed Alzheimer’s caregivers surveys though excluding caregivers of other forms of dementia may not have been an intention.

Support bodies for dementia caregivers are often under the umbrella name of Alzheimer’s, such as “Alzheimer’s society” or “Alzheimer’s and related disorders society.” Dementia caregivers of the non-Alzheimer’s dementias may not approach such bodies because of the name. I can share my own situation: in my initial days of seeking support I ignored all such bodies because the doctors had so clearly told me that my mother did not have Alzheimer’s–why, then, would I go to organizations focused on Alzheimer’s?

I find it weird that the terminology is skewed to make other dementias fall under the Alzheimer’s umbrella when, definitionally speaking, dementia is the umbrella and Alzheimer’s Disease is under it. It seems topsy-turvy to me I suspect the cause of this naming convention is historical, but it does end up making the non-Alzheimer’s cases feel a bit…unwanted? Outsiderish?

As I mentioned, this topic is close to my heart, and I don’t think I’ve done justice to it in this blog entry today. But I’ve begun thinking about it. Maybe some of you will share your thoughts and concerns (if you have any) with me through comments or email, and maybe I’ll get some idea on whether and how to pursue this topic in later blog posts.

Website referred to above for information on dementia in Hindi: http://dementiahindi.com

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Disorientation, memories, adjustments, new realities: two weeks after my mother’s death

These last two weeks, since my mother died, have been busy in some ways, surreal in many. I am acutely aware of the spaces left empty by the death, spaces in my day, my mind, my feelings. I’ve been swinging between energetic bouts of work, apparent acceptance of my changed situation, sharp bursts of memories, confusion about my future, and total disorientation that hits my guts with a feeling that something’s horribly wrong. I’ve talked about my mother with more people in these two weeks than in the last few years; most of these interactions have been heart-warming, yet put together, been a heavy dose of socialization for an introvert like me. And I’ve kept myself moderately busy because I’m not sure I can handle too much emptiness.

It’s weird.

Over the last several years, my caregiving involvement and work had kept increasing till caregiving became an immersive role. I made major adjustments in my life and my thinking to be able to focus on my mother’s care. I allowed no distractions to take my heart away from this core responsibility, and I structured everything for smooth care. Here’s the thing: Creating a suitable daily routine for her was, after all, the same as creating a matching routine for myself. Making sure she was not inconvenienced required lots of planning and also building in redundancies. So, for example, as I needed a room heater for her, and as I would not be able to get it repaired fast enough if it stopped working, I bought a spare heater. I had spares for everything, I had checklists, I had standby stuff for various contingencies…

All these choices enabled me to provide the care smoothly, and with less tension that would have otherwise been the case. Perhaps I overdid “caution” at places, but I am not a risk taker, and a caregiving situation is fraught with unpredictable events.

Additionally, I was constantly alert. I would not even go down to check the letterbox without carrying my mobile.

Now these habits and choices are irrelevant/ unproductive.

And of course, there is this basic aspect: with a substantial part of my self-identification so closely linked with being a caregiver, what am I when there is no care recipient? My usual “about me” text in various online profiles includes a clause “and a caregiver for a mother who has dementia.” This must be changed…to what?

So yes, these last two weeks.

I’ve been busy, of course. There has been clearing up to do. Like, just a week before my mother died, we had bought medicines, diapers, etc., for her for a two month period; that was donated off. Also her wheelchair, airbed, things like that. Then I donated off more personal stuff like clothes, but also made sure I kept some pieces that I might want to touch/ see later, just to remember. I interacted with loads of people (as I mentioned above) handling condolences and catch-ups from persons I had not talked to for years, as well as calls from people I have been in touch with. There were persons sharing old memories, persons sharing suggestions for what I can do now, persons asking questions. Strangers got in touch, too, especially for information on body donation.

After the first few days, I resumed normal stuff though at a slower pace. I did some caregiver support work, responded to queries from strangers regarding dementia care services and (what else!) availability of trained attendants, even talked to persons eager to set up new support facilities. I did other stuff that life has been made of these last few years.

Twinges of disorientation have kept occurring all through these days because the structure of the caregiving day remains hardwired in me. When at home, I keep getting up to check up on her/ do something that was once part of the smooth daily care routine. If outside home, I find myself checking the watch ever so often, experiencing that “I must get back” feeling–I timed myself on one trip outside home and found it arose five times in a half-hour

For years I have followed a simple rule while going out: I should never be more than one hour drive-back distance from home, maximum 1.5 hours (which, after I factored in possible traffic jams, did not give me that much of a radius from home). As I now try to extend my thinking to traveling beyond that geographical boundary, I feel I’m doing something wrong, then remember it is not wrong now.

Habits take time to be set aside.

Memories of my mother pop up at random, unexpected times. As long as I was seeing her day after day, bedridden, uncommunicative, I was anchored to her current state. But now I find myself often remembering her as a much younger person, the way she was in her thirties, forties and fifties. I can’t say I “miss her” in the sense that I want a fifty-year-old mother walking through the door, and perhaps this is because I have seen her closely in the decades that followed…but I am experiencing more nostalgia now than I felt through the years when she was fading out.

I’ve started putting together some objects for a “memory box” I might make some day, when I am less disoriented.

So yeah, this is a strange process.

When I was caring for my mother, I had taken a conscious decision not to think about or dream about my life after her death. I felt that such thought/ imagination could unsettle me and may even compromise my caregiving ability and attitude. I have no regrets about that decision. It helped me do what I felt was right…

But here I am now, facing what I had not planned for, not thought about.

I’ve heard from someone who said it took her four months to get herself to cry. Some others have told me of long-term caregivers who have not got over the loss even three years after the person died. Seniors from the caregiving path often talk of an emptiness that doesn’t go. Take it easy, counselors say, give yourself time.

This is what I am doing:

I’m reminding myself all the time to remain gentle with myself. I’m trying to let the implications of my changed reality percolate through all layers of my identity and habits and memories. I’m staying moderately busy with the simple normal activities I was doing before: working somewhat on my website, helping caregivers, remaining available for dementia care, working on other writing–but I am allowing myself enough time and energy slack to adjust, think, relax, even attempt new things. Not so much time that I feel unnerved, but enough…I’m trying to make small, digestible changes more in line with my new situation, keeping myself “soft and loose” to the extent I can. I am tentatively feeling out the idea of taking a few days of vacation out of town (even the idea seems alien, stress-inducing, and “wrong”).

And I’m pondering about what loss, closure and moving on mean…

On the other hand, I’m consciously staying clear of jumping into big new stuff. I am not starting any new projects or making any larger commitments. It’s too early to know what direction I’ll end up choosing, what identity, what mix of activities.

I owe myself some experimentation.

Some persons have suggested that I make a list.

As it happens, I had done a lot of to-do list consolidation about a month back. But the premises of that consolidation may no longer hold true.

Well, one can make new lists.

Post describing my mother’s death: Impermanence, Death, Closures and Continuity through Body Donation

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Impermanence, Death, Closures and Continuity through Body Donation

In brief, my mother died at home two days ago, on Sunday evening from aspiration pneumonia. In accordance to her wishes, I donated all the parts of her body that I could. Her eyes went to the eye bank; her brain went to the brain bank for research; the rest of her body went to a medical teaching hospital for students studying anatomy. Again, as per her wishes, her body was at no point put up for viewing, and no other rites were held.

These various body donations put a dignified, respectful and heart-warming end to a life that had been racked with challenges and deterioration for many years now. My mother looked peaceful, and it was the sort of end she always wanted, and I was glad I could respect her wishes.

Sharing below some of what happened.

The day started much as normal. My mother had been stable but deteriorating. The March beginning blood tests were normal. She had problems swallowing and would sometimes make gurgling sounds; they sometimes subsided in a short while, but sometimes needed medicines, including antibiotics. My mother was spending most of the day sleeping and not showing any interest in people around her most of the time.

It was around mid-morning on Sunday that she started the gurgling again. It seemed worse than the minor kind that subsided on its own, so we made her lie on her side, and called the doctor. Her expression showed no discomfort in spite of the gurgling sound, but her breathing was shallow and rapid. After a while, her body seemed warmer than normal.

Hubby and I surfed for gurgling while waiting for the doctor. We downloaded pages and PDF files with scattered, even contradictory information. Some people said gurgling came and went, some gave the gurglers just a few hours or days to live after it started, some gave them a few months, some said there was no correlation. Some explained that gurgling sounded bad to the family and worried them, but was not actually a hurtful experience for the patient. One document cautioned medical practitioners not to use the alternate term for gurgling (death rattle) in the presence of family members.

The doctor came, checked her, made me hear the gurgling through the stethoscope placed on her chest, prescribed antibiotics to be given via IV. He initiated the process of a nurse coming over with the IV stuff, while hubby went to buy the medicines. After a while, my mother’s gurgling reduced, and she seemed very tired. I tried to talk to her, but felt she wanted to rest. We cleaned her, and let her rest. Things seemed better with her. Meanwhile, we were following up for the nurse with the IV, and as soon as we realized the nurse would be arriving shortly, hubby went to my mother’s room to tell her that.

She was not breathing.

Hubby tried to check the breath by holding his finger, and then his mobile under her nose, and started chest compressions. I was there by then, trying to locate the pulse. Nothing. Her eyes were half-open and showed no response. The nurse arrived right then; she, too, checked my mother and said she seemed to have passed away. I promptly called the doctor; he was off for the evening (Sunday, see), so I rang up the alternate doctor, and she said she would be there as soon as possible.

As we waited for the doctor, I placed a wet cloth on my mother’s eyes; she had been particular about eye donation and other body donations. I checked my emergency bag and file and collected all I’d need to take to the hospital. We cleaned up my mother to the extent we could.

The doctor arrived, confirmed the death, gave the certificate. The brain bank was contacted to inform them we wanted to bring the body right away (there is a window within which body donations must be done). We tried to arrange an ambulance; the first party we contacted called back after a while saying their drivers were not locatable (Sunday, see). We managed to order another ambulance. The ambulance man came up with a stretcher; my mother was moved to the stretcher and then carried down six floors with the help of some persons. We followed the ambulance by car and reached NIMHANS, where the brain bank was, and where the doctors expected us and had made preparations to receive us.

I requested that the eye donation be done first, and while we waited for the eye bank doctor to arrive, the eyes were moistened with saline. Then the eye bank van arrived and the doctor got to work. Various consent forms were signed.

The second donation was the brain donation. I had signed the consent forms. The brain removal required a team, so the brain bank staff did the necessary steps to keep the body correctly overnight, and the brain removal was scheduled for the next morning. Hubby and I returned to an empty home, and closed the laptop’s browser windows full of information on gurgling.

The next morning, the doctors from the brain bank called and informed me that the brain had been removed, and that they had prepared the body prepared for its third and final stage: the donation of the rest of the body to the anatomy department of a medical teaching hospital, where I had already enrolled my mother. I handed over my mother’s medical records and her brain scans to the brain bank doctors, in case they needed them while studying the brain. I also offered to provide any other information I had if they needed, assured them I was available, and told them that they could quote me to any potential donor who may want to know what the family feels about such donations, and may want to meet people who had actually done this type of donation.

Unfortunately, the tribe of brain donors is not large…But that is a topic by itself…

My mother died on Sunday evening; by Monday afternoon, we had completed all the formalities of the body donation, and what I had now instead of my mother was a bunch of certificates: death certificate, eye donation certificates, brain donation certificate, body donation certificate. I had seen my mother being slid into a freezer in the college mortuary.

I’ve given the functional account above, and I’ve also had some people talking to me after they heard what I’d done, and it seems that most people assume that the donation part was gruesome/ difficult/ unpleasant/ requiring tremendous courage, so I’d just like to briefly say: NO. The process was not gruesome, not difficult, and not unpleasant. It did not require great willpower or courage either.

Frankly, the donation process was the most beautiful way I could have ended the physical process of my mother’s final journey.

All through the donation process, every doctor I met was not just considerate and helpful to me, but very gentle with my mother’s body. In this final phase of her mortal journey, she was treated as someone valuable and for that I am both grateful and happy.

At one point, I saw a doctor adjust the sheet around her face with such tenderness and concern that I felt he had honored her in a way I can’t begin to describe.

When the eye bank doctor was working, I asked whether I could watch the process; it was the sort of thing my mother would have expected me to watch. I, too, wanted to be there when this process, so important to her, was happening. When at the final stage the doctor was placing cotton and closing her eyelids over it, I remembered suddenly how my mother’s eyes were always considered beautiful. Last year, when sharing memories of my mother in a blog post (My mother, a collage of my memories) I had even mentioned this.

As I watched the doctor use a saline-dipped swab to gently wipe her face, I wondered what beauty really was. So yes, eyes may look beautiful when they are large and expressive, as my mother’s eyes had been, but to me on Sunday at that late hour, it seemed that my mother’s eyes had probably never been as beautiful as they were when they were being offered for use to others to see from.

I knew at that moment that the donations I was signing consent forms for were donations I would never regret, that the whole experience was so sacred and so heart-warming that all other forms of closure paled in front of it.

When my father had died fourteen years ago, I had performed his last rites in the religious way. Being an only child, and though female, I did the steps that only sons are supposed to perform, including the tap on his skull that allegedly releases the soul (I think that’s what it is supposed to be for). Though we did an abbreviated version of the traditional process, it still stretched across days involving long lists of things to be bought from specific markets, coordinating priest timings, and what not. There had been immersion of ashes, havan, prayer meeting, stuff like that. The experience, supposed to bring closure and peace, seemed surreal at times, disgustingly commercialized at times. It left me unhappy, disoriented, and depressed, partly because of the crass materialism of many of the priests, vendors, etc., who tried to wrangle out all they could, and cheat when they could, but also partly because the whole process was so full of sadness and reminders of that.

As a contrast, what I experienced with this process for my mother was happiness and relief that my mother, who had always wanted to be useful, and whose health had thrown up extreme challenges leaving her unable to even communicate–that mother of mine ended her journey in a way matching her beliefs and her life, surrounded by respect and consideration, a fitting end to a great life.

Post referred to in this blog entry: My mother, a collage of my memories

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

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

Let’s talk about this sense of futility….

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t want to feel an alien.

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

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

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

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

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

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

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

As for talking about dying…

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

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

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

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

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

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

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

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

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

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

Such interactions drain me.

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

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

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

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

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

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

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

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Resources for dementia care volunteers now available online

In January this year, during my blogfest, one work area I identified was: Design a simple and structured way for dementia care volunteers in India to access relevant documents and resources created by me without their needing to contact me..

Over these past few years, while trying to help other caregivers and during my interactions with like-minded volunteers/ caregivers, I have  been preparing various documents and wishlists; I have always shared these openly with anyone who contacted me and seemed interested. These persons could use the ideas and information that helped, and ignore the rest. They could also give me feedback that I could use to improve the documents.

Around December last year, I realized that my existing modality of sharing was not sturdy and effective because it depended on chance contacts and was time-intensive. I must also admit that, being a social recluse, I am intimidated at the very thought of scaling up my availability for person-to-person contact.

I knew the solution would be to share things online, but was unsure how to proceed. My Dementia Care Notes, India website is designed for caregivers, and I did not want to confuse or dilute the caregiver focus of the site. On the other hand, my blog (this blog, where you are reading this entry) carries posts that range widely, including personal experiences, musings as a caregiver, experiences and thoughts as a volunteer, wishlists, announcements, etc. But blogs are, by nature, not so organized, and while each post does have “categories” and “tags” attached, only readers with extreme perseverance/ stubbornness are likely to reach all entries relevant to a topic.

So, I chose a different online home for sharing material with volunteers; I created a special section on my personal website aimed specifically at sharing resources with volunteers working in dementia care in India: Resources for volunteers helping caregivers.

Here’s my intention: whenever I create a document that I think could be of use to other volunteers, I will add it to this section, either in an existing page of the section, or by creating a new page. This could be a wishlist of areas that need work, a document explaining dementia home care in India, or a document with my ideas on how to actually provide a service. Whenever I create a blog entry that is specifically relevant (in my opinion) to volunteers (and is not just a hodgepodge of ideas) I will add a link to the appropriate page in this section. I am leaving comments open for people to add their feedback or other links they find useful.

This section on my website contains my views, opinions, documents. I am not an expert in any way, not even someone with an NGO or a trust or any qualifications as a volunteer. I am just a caregiver who developed a commitment to help other caregivers. I am just someone trying to do whatever I can, and share whatever I think and do, as honestly as I dare to. I undertake no implicit or explicit guarantees that the documents I am sharing are relevant or will help; I am creating this section because I strongly felt I need a space for such document sharing. How others use them is for them to see. Of course, I welcome feedback.

Take, for example, the setting up of support groups for caregivers. We so desperately need such groups. Around the middle of last year, I had drafted a document for creating caregiver support groups for a volunteer body, and then, a few months later, amended that to fit “dementia” caregiver groups for another person keen to set up a group. I know of at least three other persons who have wondered whether they can set up a support group, and what would be involved. There may be many more persons thinking of this. Now, the draft document I have created is available for anyone to read and use as fit, send me feedback, whatever. If someone sends me more ideas, I’ll amend the draft as suitable.

The section is intended for volunteers who want to equip themselves to understand and help dementia caregivers in India, and includes discussions on the status of dementia care in India and the impact of culture and context. Currently, it contains the following pages (this may change).

• Resources for volunteers helping caregivers
  • Introduction: Becoming a well-informed volunteer and selecting where to help
  • The Cultural Context of India and its Impact on Dementia Care
  • Applying available dementia/ caregiving material to the Indian context
  • Available: Explanation of dementia home care in India
  • Available: Dementia Awareness Presentation
  • Available: Draft document on setting up support groups
  • Ideas: Trained attendants and respite care for dementia
  • Ideas: Mobilizing children and youth for dementia
  • Ideas: Improving dementia awareness and sensitivity to caregivers amongst healthcare professionals

Pleave have a look or share the link with anyone who you think may be interested. Thank you!

[And that's one item off my to-do list ]

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Confused, disoriented elders who wander: what can be done, and a video with tips.

A few days ago I heard of an incident that had an unfortunate hum of similarity with many such incidents one hears of: an elder was found dead in a lake near his home; he had probably slipped in, but no one really knew. I was told, “He had been wandering for months. What could they do!” The way of speaking implied that such tragedies are inevitable once someone begins wandering.

We’ve all heard stories of some seniors who start getting confused and disoriented as they grow older, of their wandering off looking for homes demolished decades ago, looking for people and places that no longer exist, wanting to do things like go to office when they have retired years ago. We’ve heard of such wanderers being found after a few days, injured, starved, clothes tattered, with no one knowing what happened in the interim.

We’ve heard of families still waiting for the wanderer to return.

And that occasional sentence, What could the family do! uttered as a statement of hopelessness, and not as a request for suggestions.

Yet, while the tendency to wander may happen, wandering and tragic consequences are not inevitable. There are things that can be done.There are ways to reduce the chances of such wandering, and there are ways to improve the chances of finding a person if he/ she wanders. These are not fail-safe ways, they may not always work, but a reduced probability is worth it, no?

The problem of wandering is so common that I find it strange that we don’t have a more vigorous discussion on tips and tricks for it. Somehow, I suspect that till someone close to us wanders, we assume wandering only affects others; we don’t think it could happen close enough to hurt us. Perhaps the problem doesn’t seem immediate enough to engage us. But the problem of wandering is best tackled by reducing the chance of someone wandering, by ensuring they always carry an identity, and by having quick ways to locate people who wander.

And here’s the thing: we cannot prevent wandering if we only read tips about it after people wander. Tips must be available widely so that when an elder acts confused and seems prone to wander, family members don’t shrug helplessly, saying “What can we do if she wanders!” in a way that shows defeat. Instead, they genuinely ask around, “What can we do if she wanders?” because they know they can get suggestions and solutions.

When my mother started getting confused and disoriented enough to start wandering, I had a tough time. I tried explaining to her that she should not wander; it failed, because she did not see herself as wandering. She was trying to see who has rung the doorbell or walked past in the corridor. She had stepped out for some work, except that she forgot what it was. I would dash out to catch her before she hurt herself (she had balance problems) or got lost, and every time she would get angry at me for stopping her from what she wanted to do. (Looking back, I could have found better ways to distract or persuade her). I tried to make her carry a tag; she got angry again. Once, I asked a neighbor to sit with my mother for around ten minutes as I caught up with an outside errand; I returned to find the neighbor had left my mother alone because “Auntie promised me she would not wander.” My mother, meanwhile, had wandered.

So I started making sure she was never alone at home, and I would lock the door from inside. My mother complained to some friends who then scolded me for mistreating her. “I would not like to be locked in,” one elderly man said. “My children would not dare to do this to us.” This was after my mother’s diagnosis and I explained that she got confused, she had a balance problem, even a small accident could cause a fracture, or she could get lost. He assumed I was some control freak out to trouble my mother (too many TV serials with bad children?) One neighbor even egged my mother to sabotage my efforts and demonstrate her “independence” by walking out, so much so that my mother would sit on the sofa waiting for the moment that the door was unlocked so that she could dash out of the “jail.”

BUT: No one suggested anything I could do to reduce the wandering

The funny (sad?) part is, all these persons who were critical of my (unskilled) attempts to keep her safe, all of them had known of some wandering episode of someone or the other. They knew some people wandered; they just didn’t think my mother was the “sort who wandered” even though she wandered. Because, “Auntie seems fine” or “Auntie used to help my daughter in her studies” or some such thing.

We definitely need more recognition of the fact that people who seem normal in short interactions may also wander.

And we need to get cracking on sharing tips so that when seniors start showing some confusion, some disorientation, families know of these ideas and can implement what is suitable, so as to reduce the chance of an actual wandering episode or tragedy.

An example: A few years ago, a lady wandered because of a door left unguarded for a few minutes, but the family had stitched a label with the name and phone number at the back of her nightgown, and a passerby called within minutes that he had spotted a lady wandering; she was brought back safely. One small action, one small tip, and look how it averted a tragedy! When I heard of this incident, I remembered my futile attempts to make my mother pin an identity to her pocket and her angry protests; I had not thought of stitching a label at the back of her nightgown, at some place she would not notice it.

Yes, we need these tips pooled and talked about.

Two months ago, prompted by my concern about wandering, I had prepared a video with tips on wandering, and also written a rambling blog entry about my concern for wandering here: Diverse responses, networks of concern and support, problems like dementia and wandering. Recently, I created the Hindi version of the wandering video to make the tips and suggestions accessible to a wider audience. I created the video as part of my work on dementia, but the tips would apply to any confused/ disoriented person

This, friends, is my way of adding to the pool. But information can reach families that could benefit from it only if people spread the word. It may seem like a small thing not worth doing–why bother, let others share the link–but perhaps one person you tell, one tip they employ might prevent a tragedy. Or they may get inspired and think of some more tips and share them around. It could begin a conversation, the sharing of a concern that would avert tragedies. And frankly, none of us is immune from such tragedies…

The Hindi wandering video is here: (If the player does not load, you can click here to see it on youtube).

The English wandering video is here: (If the player does not load, you can click here to see it on youtube)

And if you don’t really believe that wandering is a real problem that it hits people unawares and can lead to tragic consequences, have a look at this presentation by Sailesh Misra of Silver Innings which includes real life examples (identities changed) of wandering episodes in India: Wandering and Missing Senior Citizens: Why does this happen and what to do then

And if persons do wander and get lost, here is another link from Sailesh you may find useful: Blog for missing senior citizens.

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Human costs of concealing a dementia diagnosis

Sometimes, even after a doctor has confirmed that a patient has an irreversible dementia, the doctor may not tell the patient or family about it, thinking there is no cure, so nothing can be done, why upset the family unnecessarily? The note below expresses my view on this. (I am not talking of situations where diagnosis is delayed because some doctors do not know enough about dementia, which is a vast topic of a different nature)

Doctors sometimes debate on whether or not they should inform patients / their families that the patient has an irreversible dementia. Some feel that since there is no cure for dementia there is no point in communicating the diagnosis (they feel it would be disheartening, or pointless). Others are confused on what is right (to tell or not tell).

Here’s a fact worth considering: knowing a diagnosis doesn’t just enable a patient to get medical treatment; it also helps everyone concerned to see the patient’s behaviour and deterioration in the proper context and make changes to improve the overall quality of life.

The fact is that the patient may be worried about what is happening to his/ her memory, abilities, emotions; the patient may be scared, isolated, angry, unable to cope.

The fact is that the behaviour of dementia patients, if not understood, often also bewilders and hurts people around the patient. Families undergo emotional pain and conflict. They sometimes even split up or fight legal cases because the patient misunderstands/ forgets things, says wrong things, flings accusations, takes wrong decisions, gets violent, or even acts in an uninhibited or “vulgar” way. Such painful situations could have been avoided if family members had realized that the behaviour was because of a dementing disease. Family fortunes are sometimes squandered because families, unaware of the dementia, let the patient take major decisions.

Essentially, not knowing that the patient has dementia means that families continue their old ways of interacting with the patient, which often makes problems worse for everyone concerned.

Many families feel very upset when they realize later that their doctor had known about, but chosen to conceal the dementia diagnosis. Family members deeply regret years wasted in bitterness and bewilderment which knowledge about dementia would have reduced; they continue to feel guilt about things they said or didn’t say, things they did or didn’t do, for years after the patient’s demise.

On the other hand, families aware of the diagnosis are able to change their ways of talking to and helping the patient. They are able to arrange things so that they and the patient can enjoy what is still possible rather than only notice the reduction in capabilities. All this improves the quality of life of the patient and the family, even if the underlying dementing disease cannot be cured.

Families aware of the diagnosis are also able to re-arrange their lives to minimize the impact of dementia caregiving on their other responsibilities. They can plan for the caregiving required across years by rearranging business and personal commitments, relocating their home, changing jobs, deciding how to share work with siblings, etc.

Then, of course, let us consider the patients’ right to know, especially as they may be worried by what is happening to them. A lot of patients diagnosed early have talked of the sheer relief of knowing that there was a reason they were facing the problems, that merely knowing a diagnosis reduces their stress and makes them more capable of handling things, even if there was no medical relief possible for their form of dementia. They feel better off knowing the diagnosis though they may not always remember it (thanks to dementia).

I believe the debate on whether doctors should reveal the dementia diagnosis is not confined to India, it exists in other countries too. Perhaps some doctors don’t understand the human cost of their silence about the diagnosis; to these doctors, if there is no medicine, there is no point telling people of the problem. Their concern centres on only the medical aspect, and they view the debate of whether to tell or not as “academic.”

Currently, even if the doctor has figured out that a patient has an irreversible form of dementia, the doctor may or may not tell the family; the concealing or revealing of the diagnosis depends on the individual doctor’s conviction about revealing the diagnosis, and how knowledgeable and sensitive the doctor is about problems beyond the ones medicines can solve. The problems of living with dementia, so to say. Not just the academic listing of symptoms, but the facing of the problems in real life. Currently, go to one doctor and you will get appropriate information and support; go to another, and you may hear something wishy-washy about how such problems happen to some people when they age.

Ideally, it would be great if patients and families were confident of some sort of minimal level of information and support from doctors, regardless of the doctor’s personal convictions.

From what I remember, some decades ago, there was a similar reluctance amongst many doctors regarding revealing a “cancer” diagnosis. That has changed, possibly because cancer has been “de-demonized”.

Regarding dementia: maybe if many patients and families describe how knowing the diagnosis improved their quality of life significantly (even though dementia cannot be cured), more doctors will appreciate that patients and families are stakeholders who need to know what is happening. They may evolve appropriate ways to convey the diagnosis and related information, discuss these, refine them. And maybe even create, as a community, suitable guidance that all doctors will conform to.

Definitely the patients and famililes would be better off for it.

This is my opinion; I’d love to hear your views.

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Families, support, privacy, caregiving and chaos and misunderstandings in unprepared families

I am an only child who grew up in a nuclear family and spent most of my childhood in cities far away from relatives, I always had this “grass is greener when you have siblings and a large family” conviction which was further boosted by all the talk I heard about how families were always there for you, they were the people you could depend on, the safety net, and so on. I even remember how, when I was around eight or nine years old, someone asked me what I wanted, and I said I wanted a brother or sister, “kisee bhee size ka ho”, something everyone around me found very amusing (except my parents, perhaps).

Cut forward several years, I started having doubts about this “normal family” warm, fuzzy envelop of love, of “your family is always there for you, with you” sort of business. My experience net had widened. I saw families that remained rock-solid together regardless of tsunamis of setbacks. I also saw families where siblings retained a relaxed amiability across distances that let them connect emotionally even if months has passed by between conversations. But then there were families where sibling fights were bitter and beyond reconciliation. And there were the other families where, whilst there were no outright yelling-slanging match, the gaps were unbridgeable and smiles stiff and reserved for when outsiders were watching, and the normal distance of cities and busy schedules were a matter of relief. There was no universal standard of “family”.

And I wondered whether the implied concept of “normal, happy family” and lasting sibling affection was more a matter of wishful thinking. Perhaps people kept talking of it as a norm when it was actually more of an “ideal”. I wondered whether repeated statements of “this is our culture” and “normalcy” around “family-oriented society” made people feel defensive, guilty, or inadequate about their differences and conflicts with siblings.

As children, siblings are forced to live in the same house, and even if their personalities and stuff are vastly different, they manage to survive together. But as adults, living in separate homes with their own families, perhaps the differences between siblings are easier to act on, because a distance can be maintained? Or is it distance over the years that creates the rift? Maybe one needs to work on maintaining the connection with siblings the way one needs to work at maintaining anything worthwhile; perhaps it cannot be taken for granted…Frequent interactions, exchanging thoughts, sharing responsibilities, comings and goings, on an ongoing basis, not just when there is a crisis. Hey, I’m an only child, I’m clueless. What I do know is that things are not always as hunky-dory as they are supposed to be, even amongst siblings who seemed close enough as kids.

Nowadays, as someone who talks to many caregivers, and also sometimes gathers their stories as interviews, I have repeatedly heard stories of severe sibling conflicts over caregiving, far more serious than “he took my geometry box” childhood squabbles everyone treats as “cute.”

When I talk to caregivers, I find that they open up about the more “gory” details of their cracks in happy families only after rapport is established, and even then, they are defensive, and more likely to open up to fellow caregivers than to others. Even in situations seething with bitterness, people tend to hide the problems from outsiders (ghar kee baat baahar nahin kehnee chaahiye) either out of privacy or shame, fearing that they would be called complaining or would face comments like, “but surely you love your brother” or “brothers and sisters must support each other”, sentences they are not really happy to hear given their situation.

(My idea is not to say conflict is inevitable, but to say, hey, let us understand situations where it may occur and see if we can prevent/ diffuse it. None of us need more trouble in life)

I have managed to get a few caregivers share their family-conflict experiences through interviews. A few months ago, a woman facing severe mismatches with a sibling (over sharing caregiving work and taking decisions) wrote in to thank me for an interview I had put up on family conflicts, saying she was relieved to know that she was not the only one facing that sort of problem. She felt that she could make some small changes that would reduce the chance of misunderstandings because she now understood something of the opposite perspective better.

And more recently, I met a caregiver, Ritika (not her real name).

Ritika’s initial chat and queries were on simple, small problems; she would narrate some issue, we would chat. But I could sense her tension. Over long, continued interactions, she then began unfolding the more overwhelming and personal aspects of her situation. A month ago, she agreed to share her story with others through an interview on my site, because talking to me she realized that more people needed to know that stories like hers happen, too.

Ritika could be a woman in the apartment next door to you for all you know. She lives in an upper middle class locality, looks after her father alone, has family in other cities. I assume that to neighbors who may pass her in the corridor, she seems energetic on some days, tired on others, is active in some types of interactions that living in an apartment complex necessitates, and is not active in others. She does not mix much. In short, she is one of us except that she has been plunged into a situation most of us assume we will never be plunged into.

When volunteers encounter people of such a profile, they often give advice on how the caregiver needs to do more for the patient; they give advice on how the children should be willing to make more time for the father with dementia, they talk of love and tenderness and about patience.

And while some caregivers listen, others sidle away from such advisors, because these caregivers cannot open up about the actual, serious problems they are facing.

Some problems, you see, are difficult to share. Like a zero bank balance and not having money to buy food. Like having to skip meals so that the father can eat, like having to sell off silver and gold because there is just no money…the sort of problems Ritika has faced…

Yet Ritika does have family, well-to-do family…a sibling, a husband. And they were not part of her support or safety net through those extreme times, and are not emotionally there for her even now.

Ritika’s story is complex. Events piled on to events, there were misunderstandings caused by things her father did (probably in part because of his dementia), and these actions caused pain and distances, and Ritika is bearing the brunt of the bitterness. And there is loneliness. Rifts are created easily, but not mended that way. (The interview is here: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts)

As Ritika talked to me of how the caregiving has created chaos in her life, leaving her stranded alone in multiple ways, I was convinced that this story needs to be told. Not to get Ritika sympathy or praise, nor, indeed, to get her blame or speeches. And not to make readers criticize the others around her, because every story has multiple perspectives, and there are always reasons why things happen. Blame games never help.

I feel Ritika’s story needs to be told because people need to know and understand what happens in some cases. What can cause rifts, misunderstandings, how poor communication and planning end up overwhelming and stressing an unsupported caregiver, even if that is not what the rest of the family intended to do. Readers need to draw lessons for themselves, be prepared.

This interview focuses on the impact of caregiving on all aspects of the caregiver’s life and identity. The caregiving that Ritika does is exhausting in itself, because she does all the caregiving alone for a father who is dependent, uncommunicative, on catheter and diaper and unable to clean himself. But Ritika’s exhaustion does not come solely from the caregiving work, nor from the fact that she has to earn money alongside; her exhaustion comes from these and a multitude of other factors, all combined into a mass that presses on her.

Yet, as Ritika says: it need not have been like this To quote her further:

If there are elders in a family, the chances are that such situations will occur. Families can be ready for them. They can plan for them. When situations occur, solutions don’t automatically evolve out of sheer love and affection for each other. Solutions evolve out of trust and sitting together and planning for all eventualities. All ties get tested at times like this if there is no plan.

It is a long interview, and frankly, I was amazed to find how balanced Ritika is about everything going on in her life. If the interview seems depressing at places, it is solely because the situation is overwhelming; Ritika herself is energetic and balanced and active in spite of it all.

Let me hope sharing this story will provide readers another data point in the spectrum of caregiver lives. That they will “listen”, that it will help them understand. That they will glimpse the underlying complexity care situations may have, and next time they meet a caregiver, they will not be hasty in judging, in acting preachy and simplistic. Or when a caregiver falls silent in face of what may sound like criticism, that they will pause and wonder whether this person, too, could be facing some of the sort of problems Ritika faces, but is too diffident to say anything. Even a fraction of such problems could overwhelm.

Do read the interview: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts

Even using a pseudonym, the story was difficult for Ritika to tell, and it took her effort and courage. So let us at least see if we can, for some minutes, sink into that situation and feel with her, and then return back to our own skins to see whether this understanding nudges us along to consider some changes we may want to make in our own lives…

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Day 31: the year’s target met, the blogfest completed

Oh boy, what a relief! Making 31 entries in 31 days is an endurance test, and as it is the only target I set in the year, I am so glad it’s over. It’s not that I will be couch-potatoing the rest of the year, but the January blogfest is the only activity where I aim at time boundaries as such; the rest of the year I just keep going at whatever pace I can manage, for whatever work I want to do.

When this year, on January 1, I kicked off this year’s blogfest, I had been very shaky about it, but all in all, though there were days I found the writing tough, I am glad I took on this job.

Because, you see, like in previous years, it has helped me notice things. The sheer intensity of a daily blog means one has to think harder, search more inside.

Here are some things I found:

• My concern about caregiver role recognition and support remains a major one for me, and that I am also very concerned about caregivers being able to pool their knowledge and tips and be a continuing community even though individual caregivers may move on and away when their loved one passes away.
• I have thoughts and ideas and wishlists that I want to share with concerned persons, and while I have been communicating these whenever I met someone who seemed interested, and while I have also been blogging about it, I have not been clear and systematic about it. I have created some resources that could be useful to others, but I need to find ways to make them easily available to anyone who may benefit: I am adding this to my to-do list.
• I confirmed to myself that I remain a brick-placer, and am not a cathedral builder (I even blogged about this). I am a document creator and a resource person and not a change agent and so what? I can, in spite of my limitations, continue to contribute so long as my energy and commitment remain. My blog entry yesterday consolidated my role, scope, and limitations as a dementia care resource person and hopefully my putting it down will make it simpler for people to know my scope of involvement. At least, I am clearer about myself now
• I discovered that I am getting increasingly concerned about ageing and eldercare in general, especially on how well the problems are understood and how well support is available to those who are not on the gung-ho positive side of the ageing curve. I see this as important because dementia care that fits in this context, but I am also concerned because I and many people I know will need such support in some years. I feel not enough is happening in this area in tangible ways, and not enough resources are available. (This is not yet an area I plan to do anything in, except share random thoughts).
• And finally, I reconfirmed that blogging continues to help me sort my ideas, meet people, share concerns and ideas, and even act as a journal for work-in-progress.

So I’ll be blogging more this year, of course, possibly managing a weekly blog norm, but that’s more like sticking to a habit than hammering myself for a target.

For today, I declare the January 2012 blogfest closed and I’m off for some celebratory chocolate.

Posts referred to above are here: My involvement in dementia care support: an explanation and (Build cathedrals or place bricks, everything helps…just do something

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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.

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.

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

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.

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.