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. Read the full post here

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.

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

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

Of Mom, and a story about dutiful worlds

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

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

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

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

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

Read the full post here

An instance of caregiver isolation

I thought I’d share an example to illustrate a situation where caregivers are unable to speak up honestly about their problems and get support.

We often hear of how we must love the patient, and if the patient is a parent, how we must love the parent as the parent loved us, and how we must do things for the parent as the parent did things for us. Yet there are assumptions here that no one questions, and situations where care is challenging because of problems caregivers cannot talk about.

But first, about families.

I know families where parents were abusive towards spouse and children. They drank, they beat the wife and kids, they would not let the children study. Broken homes, broken bones, broken hearts of small children. The children somehow managed to make their way through their lives in spite of the negativity in the home, in spite of the beating and drunken torture, the neglect, whatever.

Read the full post here

Fun times, me-time, glasses half full, and why I no longer have dreams

Here’s a post on stuff I enjoy, and what keeps me (though some may contest that) sane and cheerful and active most of the time. Seeing the glass half full and all that. And why I don’t dream about my future.

glass half full

Which reminds me, here’s a half-full glass at Café Coffee day after I’ve sucked out every drop of the Lemon Mojito–but not all glasses sparkle when half full. I even sat there for ten minutes waiting for the ice to melt–I’d paid for it, right?–then realized that ice-cold water wasn’t worth the wait. There’s such a thing as “sunk cost”. But this is quite unrelated to what I’m going to ramble about.

There’s fun and there’s fun, and on days when I can go out, I love long walks and cold coffee with ice-cream and puris and drooling over books in assorted bookshops. I don’t socialize (I’m an introvert who finds gatherings stressful) but I like going out alone or with hubby, walking, mall-walking, or sitting in a coffee shop, watching the hustle and bustle around me.

But I also build fun into my days at home.

Like jigsaws.

People rave about meditation and visualization for calming the mind, and I’m all for meditation so long as it is others who are doing it: great going, guys. Mindfully watch thoughts sneak in, and hopefully you find it enlightening rather than disheartening to recognize your “monkey mind” (and no, that’s not a mind thinking of monkey business). Visualization’s never relaxed me, either.

But a jigsaw engrosses me. Beats meditation, beats brain focus exercises. You can’t complete a 1000 or 1500 pc jigsaw if you are distracted.

Read the full post here

Listening to caregivers, respecting them, supporting them: a follow-up post

Some weeks ago, I wrote a post on non-judgmental listening being a form of support ( Listening to caregivers, respecting them, supporting them), and I was foolish enough to say I’ll do a follow-up post to share whatever feedback I’d got/ any additional thoughts, so here it is, a post to tick one more item on the three-mile long disaster called my to-do list.

Through the “listening” post, I shared my experiences and perspective as a dementia caregiver as well as a volunteer helping other dementia caregivers. I wanted to know how other caregivers felt about what I’d written–do they agree or do they have a different view? I wanted to share my thoughts and opinions with concerned non-caregivers (friends, colleagues, volunteers) and get their perspective too. So I asked for feedback on the post in various forums where members included caregivers and volunteers.

Most of us, when we read something, do not leave any comments, leaving the writer unaware of our reaction. Did we agree? Disagree? Did we benefit from what was said, or did we find it a boring ho-hum rehash of old stuff? Did any of it matter at all? This silence of the readers means that the writer has no input to consider, and refine the next article. Then we read another boring article by the same writer and say, hey, she’s still a bad writer 😦

I get feedback sometimes–as comments on the blog, through the contact form, and emails sent directly to me–and I learn from every person who writes in. When I invited comments on the above-referred post, I was hoping to get more data.

I can probably divide the feedback I got in two broad categories (1) concerned persons who are non-caregivers and (2) caregivers (current and ex-caregivers) .

Read the full post here

Listening to caregivers, respecting them, supporting them

Years ago, when I was still a newbie caregiver and very overwhelmed, a friend/ colleague made the mistake of calling me up and asking me how things were. He vaguely knew of my mother’s issues and my problems of coping, and I therefore (I’ve always been naïve) took his question to be a genuine one, and proceeded with the answer. If a squirm can be seen over a phone line, well, that explains what I perceived, but I was desperate, and here was a listener…

Or was he?

A few minutes into it, he said, (I paraphrase and abbreviate, but you’ll get the drift) “Yes, well, sorry, hmm, ya, okay, so, must be bad, huh, hmmm, yaa, so, what else is going on? Let’s talk of something hmmm, ya, well, like, well positive…so how’re things…what else…”

Utter fool that I was, I answered, “There is nothing else.” Then it registered on my slow brain that he hadn’t wanted any of this rant. He’d probably expected me to be “positive.” He’d probably just wanted a couple of good, positive sentences from me before he went on to whatever else he had called for.

A full-speed train takes a few minutes to stop after the brakes are applied; I would probably have tapered off in about five sentences but by that time he had managed to sign off the conversation anyway.

I felt bewildered and also let down. I may not have minded had he not asked at all, but asking me and then not listening…

He never called again. I don’t know whether he took a conscious decision about it; it was probably just a discomfort he felt when he thought of me, something that made him choose to make other calls instead. He probably forgot the incident.

This incident happened almost nine years ago. As far as I was concerned, I was not asking him for solutions, or even sympathy. All I did was narrate my situation in response to a question. I may have come around to the point of uttering “positive” statements that society expects, but he shut me out before that.

Overall, this was just one of the early incidents that made me start understanding how isolating caregiving could be. It is through stuff like this that I began to realize that if I talked about the realities of my life, people switched off or decided to avoid me. If I wanted company, I had to pretend my life was very different.

Read the full post here

How much is too much: focusing on relevant components while spreading dementia awareness

For me, everything’s in queue for my time and energy– things I want to learn and do, things I need to learn and do–and often it is just a toss-up: should I read that article? See that movie? Catch up with friend ABC? Or take a walk or eat ice cream instead?  I guess it’s the same for others, given how most people seem squeezed for time, just about managing to carry on.  I guess we all gravitate towards things of immediate interest, or things that loom large in our lives, picking and choosing, and maybe many of our choices are really a matter of chance. ..

A year has too few days and too many causes and events and accidents to fit in, and every day, newspapers select what to serve based on what is most sensational, most “human interest” as they call it. Come September  21, for example, we have the International Day of Peace and World Alzheimer’s Day vying for space along with the usual explosions, suicide bombers, murder, rape, ribbon-cutting ceremonies, a film star having (yet another) affair, (yet another) politician getting or being denied bail, and what not. Journalists are expected to squeeze a good story into a tight 1000 words which must cover the significance of a day, information about a condition, human interest stories of patients and families, comments of experts, resources — all assembled in a couple of working days.  

I don’t envy journalists, not at all.

But this compacting disconcerts me. Especially when I am asked by a journalist to compress years of caregiving into five or six sentences from which the journalist ‘s job is to select one or two to fit into a coherent article. I know that what I say may not get included.  I struggle to answer, and then worry, have I said what is most important? Who am I to know what would help most? When asked, as I sometimes am, “Tell me ONE thing you would advise a caregiver?” all I find myself saying is, “Oh boy, that’s a difficult question.” 

Some questions that I ponder about…
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