My involvement in dementia care support: an explanation

Persons of various profiles often contact me for input and help related to dementia care, and this sometimes leads to lengthy discussions about what I do or don’t do. So I decided to document the nature of my involvement in dementia care for ready reference.

My personal situation has changed since I wrote this post. Also, the time and effort that I spend providing support has increased significantly, so I have re-evaluated which activities are most effective for me to achieve my objective of supporting dementia caregivers in India. For my updated description about the work I do, please use this link: The dementia care work I do

Summary: Simply put, I see myself as a dementia caregiver and as a resource person on dementia care who is available to other caregivers and to persons concerned about caregivers. I am always available to family caregivers to listen to them, to provide them information, and to share caregiving tips. I learn from all such interactions. I work independently, taking up small, self-imposed projects, and after a lot of thought, I have now decided not to affiliate myself with any organization (this is because of my personality quirks). I provide my ideas and information, without discrimination, to anyone who approaches me, subject to my time and energy, but I do not partner with anybody for anything. I am not a dementia care expert or a social change agent or a mover/ shaker, and I do not participate in any lobbying or such major work.

If you are a dementia home caregiver looking for information or help, you can just skip this post and contact me instead. I’ll do my best to help (though whether that will actually help I can’t say 🙂 )

To continue my explanation of the summary paragraph above, let me first recap my personal background.

I have been a caregiver for well over a decade. In the beginning I didn’t even know I was caregiving, and then I moved through an overwhelming stage where I had to make major changes and compromises in life, and I have finally reached the caregiving stage where I am now– stable, informed, and at peace with my caregiver role. In terms of my emotional position, over these last fourteen years I moved from “what is happening” to “why is this happening to me” to “why don’t people understand, I wish I could shake them into understanding” to “people just won’t understand” and “this can’t be happening to me”. But then things improved, and some years ago, I moved to a phase where I began to think, “no one else should have to go through this”, and then “someone has to do something about it” to “let me talk about it myself” and finally, for these last two years, I am at: “let me do what I can do about it.”

Read the full post here

Unwind: dogged by reliable memories

I’ve always been uncomfortable with dogs (read: scared of dogs). My first clear memory about dogs is of when I was around six years old, a diminutive and timid kid, and a huge Alsatian dog chased me across a lawn (we were visiting the dog-lovers). I clocked my best life-time sprinting speed that day while various parents laughed like it was the joke of the century. Then, once the daughter of the house had caught the dog, I was scolded for running and making the dog think I was playing a game. I dare say if a beast taller than them had drooled over them and displayed sharp teeth, they would have thought differently.

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

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

But about a year ago, I was tested. And how! This dog dashed towards me, used me as a climbing rack and stood with its paws on my shoulder, its grinning, drooling face just inches from mine, while its owner smiled at a distance. Read the full post here

Every day is a “No TV” day

So yeah, there are no-TV days that get a lot of fanfare, but here’s the thing: most people just cannot imagine that there are real people out there, people they know, who don’t even have a cable TV connection.

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

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

“I don’t watch TV,” I say.

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

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

“What about cricket matches?”

Read the full post here

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.

Read the full post here

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.

Read the full post here

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

Read the full post here

Reducing caregiver isolation, working from home, using coworking

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

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

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

Read the full post here

Unwind: Black, white, shades of grey

photo of assembled jigsaw puzzle

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

I never knew there were so many shades of grey…

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

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

What blogging means to me

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

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

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

Read the full post here

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.

Read the full post here

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.

Read the full post here

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

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

I’ve learnt stuff since then, though 😦

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

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

Negativity, projections, and ageing

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

I have encountered this several times in the past few years, and I dare say, there were instances before that, too, but I was not clued in enough to notice them or feel a dissonance.

One aspect of this is creation of mental and social narratives and even fictional depictions. That is, how people form the story around the person and family in their mind and in the way they may talk about it to others or even include it in their fiction.

I’ve seen instances where writers pick up a few interactions they have had, give it a spin that reduces the nuances around the situation, and make it fit the story arc and narrative they want. Do they want a sympathetic elder who is being mistreated, or a family that is affectionate, or one that is overwhelmed, or are they aiming at a social commentary on how negligent society is to elders? Things like that. In this effort to do what their story needs–character development, story arc, conflict, tension, resolution–they perhaps don’t spare enough thought of how that type of depiction may impact persons on the “other side of the story.”

So a powerful novel may show how bad the daughter-in-law was to her ageing and frail mother-in-law, and if this novel gets traction, if it gets the readership and critical acclaim the author wants it to get–what will be the impact on daughter-in-laws who are struggling to do their best in far less black-and-white situations with far more complex aspects to balance?

And if the novel is based–loosely or in a thinly disguised way–on people around the writer, what will the social impact be for these unwitting fodder for the novelist’s writing project? Those are real persons out there, not cardboard tropes.

Soap operas and films, of course, end up doing this type of thing just too often, but I’ve seen similar problems in novels that have been critically lauded and have won awards.

Here’s the thing: even when it comes to the most sincere and well-meaning writer, I think the stories we make are the stories of what we think and what we want to think and what we are limited to think about by our own scared natures. And ageing, neglect, and dying are areas of large discomfort, and there is a limit to how brave and nuanced a writer can be, or even how informed the writer is about such situations. I guess negative or simplistic depictions around ageing and related family interactions will continue to be part of fictional depictions…

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

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

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

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

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

Read the full post here

Unwind: Missing the world for the jigsaw shapes

jigsaw showing old-fashioned world map

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

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

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