Indian movies depicting dementia: some comments

I recently read a review of a movie where a main character has Alzheimer’s Disease, and the reviewer stated they were giving it a higher rating because it helped them know more about Alzheimer’s.

That comment reminded me of a blog post I’d done a while ago on how, when awareness about a disease is abysmal, any depiction (movie, book, whatever) is seen as authoritative and informative, and viewers/ readers assume that the person shown suffering from that disease is “typical.” (Blog post here: Poor awareness and the danger of very few representations)

No single depiction, no single movie can give a viewer the range of possible presentations of dementia or its progression or its impact on the person, their family, and others. Placing the burden of such information on a story is unfair. We cannot assume that a movie’s depiction of a disease is correct, complete, and representative; after all, the movie industry is not making documentaries, and they are more concerned about creating an interesting (and believable) story with enough twists and turns in the plot.

But when people see movies centered around a disease, the images and actions stick to their minds; they even quote movies as an authoritative depiction

So I decided to do this blog post giving my views on the movie depictions of dementia in some Indian movies. My comments are not on the movies/ storyline/ plot/ acting, but focus on whether (in my opinion) the situation depicted is realistic enough to be treated as one data point while trying to understand dementia and its impact. Of course, I’d again emphasize that no single movie should be expected to do the complete job. We need many such movies, spanning multiple types of cases. We need to bring dementia and care into the mainstream in terms of visibility and discussion.

From what I know, there are currently six Indian movies where a main character has dementia (Alzheimer’s, some other dementia, pseudo-dementia) and shows the symptoms.

These are:

• U, Me aur Hum (Hindi, DVD available, starring Kajol)
• Black (Hindi, DVD available, starring Amitabh Bachhan)
• Thanmathra (Malayalam, DVD with English subtitles available, alternate spelling Thanmatra, starring Mohan Lal)
• Maine Gandhi Ko Nahin Mara (Hindi, DVD available, starring Anupam Kher)
• Dhoosar (Marathi, directed by Amol Palekar, not yet available as DVD as far as I know).
• Mai (Hindi, can be viewed on erosnow.com, starring Asha Bhosle)

I haven’t managed to see Dhoosar yet, but below I give my comments on the other five. I’m only sharing my view on their depiction of a situation of dementia and the environment/ responses/ care around it. Again, I emphasize that I’m not looking at the acting or plot/ pacing/ photography and all that, but at whether (in my opinion) the movie may be useful for someone who expects some insight into dementia and its impact on the patient/ family/ others. While discussing this aspect below, I’m not trying to describe the movie in detail but I’m also not trying to hide the story, so if you have not viewed the movie yet, please be warned–there may be plot spoilers below.

Of the five movies I have seen, I consider three movies worth seeing for dementia/ care. None of the movies cover all aspects (onset, progression, problems/ conflicts created, and finding dignified approaches to cope), but they contain (in my opinion) a reasonable amount of material to give an idea of the challenges involved. Below are what I consider the strengths and gaps of these movies for this “dementia/ care understanding” scope.

Maine Gandhi Ko Nahin Mara, starring Anupam Kher, (Wikipedia page here) is not a film focused on dementia. It is a film with a social message (though this “moral” is not obvious till near the end). The film has won awards and critical acclaim.

Though the film’s “message” is unrelated to dementia, the protagonist, Anupam Kher is shown as having dementia. The film does a tremendous job of depicting initial symptoms, a spurt in the symptoms, the problems the family faces, how the family rallies around and reaches out to him.

The movie starts by showing Kher as a loving father facing distinct cognitive problems. He retired some years ago, but he walks into a lecture room and talks to a science class about Hindi literature. At home he calls out to his wife, forgetting that she is dead. But he is able to remember his favourite poem and he has the energy and enthusiasm to take up the challenge of rolling out a perfectly round roti. We see the family, the love and affection between them. There are embarrassments, but they are minor, till one day something makes Kher deteriorate rapidly. Things keep getting worse. The daughter’s boyfriend leaves her, she has problems continuing her work. At home, things get increasingly challenging. The father sets fire to newspapers. He gets paranoid about poison and thinks he is in prison, keeping on protesting that he did not kill Gandhi. He wanders off. Doctors are consulted. Family members have some differing views, but they get together to cope. The daughter manages to remain connected with the father (in spite of his dementia) and he trusts her. Finally, a doctor, after studying him and his situation, suggests an experiment to rid Kher of his conviction that he’s in prison because he’s been found guilty of killing Gandhi. In this penultimate scene, a courtroom scene, Kher conveys the message that he has designed this film for. The film ends after this scene, showing Kher much more coherent and happy, able to recite the poem he used to recite earlier, when the film started.

I see this film as having two parts. The pre-courtroom scene shows dementia behavior, the impact on Kher and his family, and so on. All through this, the dementia depiction is excellent. But the film is ambiguous about how the courtroom scene impacts Kher. Does his condition just revert him to where he was earlier, in mild cognitive decline, having resolved the incident that made him deteriorate rapidly? Or is the film implying that he is now perfectly free of his cognitive problems and confusion? The film does not make this clear–and that is not the focus of the film–but for someone viewing the film to understand dementia, this ambiguity can be confusing. The viewer may carry an impression that dementia can be cured by such dramatic interventions, which is probably not what the makers intended, and is anyway erroneous.

The film is relatively non-committal about the diagnosis. The phrases used a few times are “dementia, pseudo-dementia, Alzheimer’s kind of dementia” but nothing more definite is said, and the diagnosis process is not shown in detail. However, the doctor does get involved in how the family members can interact with someone delusional/ difficult to communicate with; he even shows by example.

I think this film is excellent in the way Kher depicts dementia. It does a very good job of showcasing how dementia impacts the family members personally and socially. Most interestingly, it also shows how family members rally around to cope and how the daughter finds ways to calm her father and support him. If it weren’t for the vague treatment of the diagnosis and of the impact of the experiment on the overall condition, I’d unreservedly recommend this movie for understanding dementia. Even as it stands, though, I feel this is a great movie for dementia so long as viewers are cautioned not to assume that such drama is a “cure” for dementia.

Thanmathra (starring Mohan Lal) (Wikipedia page here) is a Malayalam film available as a DVD with English subtitles. It is a critically acclaimed award-winning film.

Mohan Lal is a very intelligent and active person, very popular. He is an employee in a Govt. job, who had not managed to get into IAS and hopes his son will do so. The film shows him as an active person, and then shows him slipping and facing cognitive problems. Mohan Lal’s portrayal of the early symptoms and how they impact him is very sensitively done. We see his hesitation, his doubt, his increasing gaps in memory and his mistakes/ confusion. He even approaches a doctor, who assumes it is stress. But then he deteriorates further, and we see the diagnosis and the doctor’s advice on care, all very well done.

The movie, which is very detailed in its depiction of this early stage of the dementia, then rushes past while depicting the rest of the dementia journey. The main challenge, the main tragedy is what the disease does to the man. The acting is excellent.

The movie shows early onset Alzheimer’s, where a man still in his earning years, is now out of job, unable to earn, and needing care. The financial, social, and personal impact of someone so young getting dementia are shown, but are not emphasized on in ways that (in my opinion) would hit viewers hard enough to make them ponder. The main earner of the family stops earning, where will money come from for the family, the patient, everything? What of the children and their education? We see his young son having to take tuitions, and his ageing father having to work hard, but these impacts are relatively muted. The son goes on to achieve what his father wanted him to achieve. The daughter seems loving and reconciled to the situation. The loss/ diminishing of the father figure does not seem to have adversely impacted the children. Internal family insecurities/ conflicts/ major problems/ setbacks are not prominent.

The Thanmathra story is set in Kerala, where dementia awareness is probably the highest in the country (they have many “chapters” of ARDSI, for example). The movie includes a few incidents where people are insensitive/ unbelieving, but the overall sense conveyed is one of a supportive family and society. The relatively high degree of support from friends, colleagues, family, and relatives shown in the movie may be true in Kerala (I hope it is so), but is unfortunately not as true for most of India. Basically, Thanmathra shows a far more understanding and supportive environment than most families of early onset dementia are likely to encounter, and to that extent, we do not see some of the tough, heart-breaking situations such dementia often results in. Viewers need to keep that in mind.

Mai (starring Asha Bhosle) (Wikipedia page here) is a very recent film where Asha Bhosle plays a 65 year old mother of four who has Alzheimer’s. The movie is a family drama, and has not been received well at the box office or by critics, many of whom called it a mediocre story. Mai (the mother) was living with her son, though she had 3 daughters in the same city, but then the son says he cannot handle her as he has an assignment abroad, and Madhu, the eldest daughter, decides that Mai should not live in an old age home, and brings her to her home. The rest of the story is about the conflicts and drama around this decision, and Mai’s behavior/ deterioration.

The movie does a good job when considered from the point of view of understanding how Alzheimer’s may affect the patient and her behavior, and how such changed behavior is perceived by the family and how they respond. The way Bhosle hides things, accuses the maid, seems normal to the granddaughter’s friends, wanders off, gets disoriented about time, place, and people, all vividly depict how some patients behave. The medical angle is well done and fairly complete; we see the doctor asking her questions to diagnose, and also telling the daughter what to expect. There are a few short-cuts, of course, (I doubt any doctor will, based on one day’s confusion on how to wear a saree, declare that a patient’s Alzheimer’s has reached stage 6), but then this is not a detailed documentary

The film depends on conflict between family members and their resentment about care, and depicts the son-in-law and granddaughter resisting Mai’s presence. There are sideline issues on whether the son was negligent and irresponsible. Interestingly, the mother deteriorates pretty rapidly on coming home with Madhu, but this angle is not explored fully.

If you are viewing the film to understand dementia and its impact, please note that the family depicted here is not approaching the situation in a wholesome way. They do not communicate/ discuss what is involved in bringing Mai home. There is no attempt to understand her state and problems from the brother’s wife before bringing her home. The home is not adjusted to make her stay comfortable and safer. They don’t try to communicate with Mai–the son-in-law and grand-daughter stay distant, and the daughter is always tense and snapping at everyone. They take no precautions against wandering even after the diagnosis and being warned by the doctor.

The family situation/ reaction is understandable, of course, because families do take time to adjust to the diagnosis and sort out differences. But for someone trying to understand how such a patient can be helped, the film can be distressing/ misleading/ depressing, because while it gives a good idea of the problems, it does not let viewers know that there are ways to improve communication, reduce conflict, and improve the quality of life. I point out this gap because if the film is being seen as “instructional” it may leave an impression that nothing can be done to adjust with or to help someone deteriorating with Alzheimer’s.

In all the three films I mention above, we see only early onset dementia. We don’t see dementia hitting people already old (Kher is a recently retired professor, Mohanlal is still in his forties/ early fifties, Mai is just touching 65). We don’t see some aspects of dementia that are probably not audience-friendly–urinary incontinence, for example. Or bedridden patients. Any tough decisions of late stage are avoided (entubation, end-of-life decisions, major financial trade-offs). The focus of depiction is symptoms of early or midstage. Viewers need to remember that movie depictions are incomplete and stay clear of sordid details, and that every case is anyway different. These movies are more suitable for glimpses of dementia and its impact, and not so suitable for families who are wondering how they will handle the dementia care for someone already well into dementia and heading towards late stage dementia.

I do not recommend the following two movies for an understanding of dementia, though of course, the movies may be enjoyable; both the movies have received good reviews and critical acclaim, and viewers and fans have enjoyed them. My focus, as I have said earlier, is seeing them in terms of their depiction of dementia/ care.

U, Me aur Hum (Wikipedia page here) is essentially a love story where love conquers all. In this movie, Kajol is shown as forgetting things right from the beginning (she’s young still, probably in her twenties). As time goes on, she marries and has a child. Meanwhile, there are some episodes of wandering/ other problems. The baby almost dies because of her disorientation. A doctor suggests institutionalization. Decision point. Hubby, after some initial wavering, decides against institutionalization, love conquers all, and problems vanish and we then see Kajol with a grown-up son. She looks well-groomed, alert, full of cheer and humor and smart enough to pretend and have a good laugh. Happy ending.

Developing Alzheimer’s in the twenties is very rare, and the point to note is that such extremely early onset is definitely not typical. Most dementia onset is much later in life. Even the “early onset” dementia usually starts later than this, when the persons are in their 40s, 50s, and 60s. For example, here’s a quote from Mayo Clinic:

Of all the people who have Alzheimer’s disease, only about 5 percent develop symptoms before age 65. …Early-onset Alzheimer’s has been known to develop between ages 30 and 40, but that’s very uncommon. It’s more common to see someone in his or her 50s who has the disease. From: Early-onset Alzheimer’s: When symptoms begin before age 65

The movie depicts Kajol as someone who is well-groomed without assistance, alert, coherent, articulate, and able to pull through a joke without any fumbling in a room full of strangers over two decades after her symptoms had been severe enough for her to wander and to almost let her baby die because of her disorientation. All scenes depicting Kajol’s disorientation and problems happen in the first few years of her dementia; once the husband takes the “love” decision, things perhaps improve magically. I’m amazed. While some persons with dementia remain functional and active for years or even over a decade, they do need support and assistance, and the movie is quite a stretch, far from a depiction that viewers may find useful to understand dementia.

The movie shows none of the problems the disease brings in day-to-day life, especially in a nuclear family with a working husband and an infant being brought up by someone whose disorientation has almost killed the baby in the past. How the husband’s miraculous love manifests in daily interactions and with her condition changing is not shown. Challenges of care are not shown. Challenges of her connecting to an infant given her condition are not shown. Though the movie has received good reviews and may be liked by some people as a love story full of hope and miracles, I do not recommend this movie to educate someone on dementia or related care.

Now, my comments on Amitabh Bachchan’s Black. (Wikipedia page here) It is important to note here that Black is not a movie about Alzheimer’s. The movie centers around Rani Mukherji and her multiple challenges and on AB’s role as a teacher, and that is what has won it accolades.

From what I can see, Bachchan’s developing Alzheimer’s Disease is something required to complete the story arc– the teacher becomes the helpless, uncommunicative one, and the student is thrust in the role of possible helper. The onset and progression of Alzheimer’s is not fleshed out or “complete” enough to provide a good instructional window into the condition. There are some very good scenes where Bachchan shows the early confusion/ disorientation, but then, we see nothing of how he deteriorates. We don’t see how he handles his everyday life (and how that suffers) after the onset of the problem. We see a bit of him after his dementia is advanced enough for him to have forgotten his name, but the episodes shown are too few to make this movie worth watching from a dementia education angle. The medical situation is barely dwelt on. The movie is really about Rani and her condition, and her maturing and becoming responsible and empathetic.

Black has been appreciated by critics for its acting and for depicting the very unusual situation of a teacher educating a child with multiple disabilities (it is dedicated to Helen Keller, as per the movie credits), and the movie deserves every bit of praise and critical acclaim. My focus here, however, is considering whether someone should see the movie to learn about Alzheimer’s, and I don’t recommend Black for this mainly because of the scanty coverage of this aspect.

I must confess, too, that I had one major personal discomfort while watching the movie: in one scene, Bachhan is shown with his hands chained to the bed with clanging metal chains. The hospital staff probably does to ensure that the utterly disoriented man does not wander, but showing this seemed to me to depict an institution-approved approach to stop wandering. I found that scene utterly repulsive/ disgusting. I don’t know whether there are places that use such methods (I hope not), but even if they do, showing them in a movie adds to the stigmatizing and possible mistreatment of persons with dementia. I definitely don’t want viewers to think that dementia as an illness where chaining patients is advisable/ normal/ correct/ acceptable; because of this very brief scene alone I’d veto this film as “instructional” about dementia.

Again, as I’ve said earlier, it is wrong to treat any movie, howsoever well-made, as a documentary on a disease. Stories are written to depict interesting characters in interesting situations, with drama and conflict and growth and all that. But the fact is that viewers do end up assuming the depictions are correct, complete, and representative, hence this post.

Related post: Poor awareness and the danger of very few representations)

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Voices of persons with dementia

This post is about the importance of hearing the voices of persons with dementia.

I think it is important to create an environment where persons with dementia feel comfortable sharing their experiences and thoughts. I think we don’t get to hear enough voices of persons with dementia. I don’t think we try hard enough to hear such voices and get authentic glimpses of what it is to live with dementia. These glimpses will help us understand how we can support persons with dementia effectively while continuing to respect their abilities, desires, and choices. But I think persons without dementia often don’t pause to wonder what having dementia could be like; we oscillate between treating dementia as a minor inconvenience and the other extreme where “he’s not there any more”, missing out on comprehending a complex situation that impacts the person in multiple ways

Some months ago, I got a call from a man whose father had been diagnosed with dementia (around mid-stage according to the son). The family was finding it very difficult to provide care and keep him safe, and they were tired and frustrated. The son wanted his father to understand and accept the diagnosis. He wanted his father to admit that his memory is a problem and that he cannot do things himself, and to cooperate with the family members, not be stubborn, not wander around, forget instructions, etc.

“We already know about dementia,” he told me. “It’s my father who has to accept it.”

So I asked him to tell me about his understanding of dementia and how it could be impacting patients and to explain which part of his father’s behavior was inconsistent with the symptoms or their consequences. For example, did he really expect his father to remember and follow instructions even though he knew his father was having short-term memory problems and also facing problems in understanding things?

The son was reluctant in the beginning, but a short while later, as I pushed him with some questions, he said, I never thought of it this way, and began using a different lens for the behavior that he had earlier considered stubborn and uncooperative. He started recalling and reinterpreting episode after episode, like how his father may have felt cornered or angry when family members acted annoyed/ angry with him and issued orders. I heaved a sigh of relief. Though he sounded unhappy that he and his family would have to understand and change so many things, he had started seeing the pointlessness of having unrealistic expectations that ignored his father’s diagnosis. This was not just about an MRI showing something or a word on a prescription; his father’s life was changing, and the family would have to find different ways of interacting and being together with him.

I’ve been a caregiver myself. After my mother’s diagnosis, I did not immediately register how dementia may be impacting her. She would not talk of her problems; instead, she became more critical and demanding, and it took me time to correlate this with her possible insecurity and confusion or with her fear that she was going insane and that she would be mocked at or locked up or exploited. My sensitivity to how dementia may be making her life difficult changed the way I communicated with her. I also started thinking of ways to make her environment safer and yet interesting enough in ways she liked it. She responded, and became more peaceful. Glitches and mismatches reduced over time.

Many caregivers have told me that they became better and more considerate caregivers after they began thinking about how the person with dementia may be feeling or what difficulties they may be facing. Problems and stress reduced, and the patients seemed happier.

It’s sad that we caregivers often get so overwhelmed and absorbed in our efforts to care for the person or to make them “behave” and “remember” that we forget how dementia symptoms affect them. We expect them to understand and accept the diagnosis but forget it ourselves.

So yes, if we step back and think, imagine, feel what dementia may be like, we become more sensitive and also more effective and respectful in our approach. If we think of how it is to be confused/ disoriented, we find it obvious that we would not want people to gang up and dictate what we must do.

Yet we must not forget that doing some dementia “role play” or “imagining” is not the same as “living with dementia”.

And when I say “living with dementia”, I refer to the life of a person who has dementia. I am clarifying this because some persons include caregiving experiences in that term, assuming an equation: “living with a person who has dementia” = “living with dementia”, an equation I don’t subscribe to.

According to me, it is presumptuous for non-dementia persons to claim they “know” what the dementia experience is like. They may be professionals who understand the brain and its function/ how the damage affects it, or they may be caregivers who have seen the patient deteriorate, but that’s not the same as having dementia. Mental role play/ projection may allow us a glimpse so that we can create better solutions or improve interactions, but our understanding remains limited. We may even be off the mark.

For example, howsoever much I try to imagine myself with dementia, I cannot immerse myself into that experience because my brain/ abilities are not affected by dementia. I can only speculate/ project based on theoretical knowledge and observations. Also, I am aware all through any “role play” that I don’t have dementia, and that after this uncomfortable ten minutes or one hour I will revert to my current identity and level of abilities. Part of me remains the safe “observer” who can snap out any time. I am not facing years of inevitable deterioration and I have no real reason to be angry or desperate or despondent about life as a whole, or dementia specifically. Nor do I need the shelter of denial.

Besides, every person is different, and how can I know how someone else, with their life history, patterns of thinking and reacting, would respond to the changed brain abilities and the knowledge of the diagnosis?

But we do need to understand how patients experience dementia because, in any illness, this understanding is integral for finding ways to support patients and their caregivers.

Gathering patient voices is tough for dementia because persons with dementia may find it more challenging to observe/ interpret what is happening to them, place it in the context of the diagnosis, and articulate it. The experiences may be frightening or depressing to recall and document, or the act of describing them may require excessive effort or focus. As the underlying dementing disease further damages the brain, such sharing becomes even tougher. If unaware of dementia prior to the diagnosis, patients may not even comprehend the diagnosis, especially if they are already mid-stage/ advanced stage. They may go through a denial phase. They may prefer privacy. Depending on where they live and the people around them, they may be wary of stigma. They are probably trying to squeeze as much life as possible while they still can. Why would they spend precious time and energy sharing painful stuff, an activity that will not help them?

Fortunately, some persons with dementia do speak out in spite of all this, because they hope that their speaking up will help others later. Their courage and honesty and their commitment to the cause is something I admire.

Some persons go public with their diagnosis, celebrities in their respective fields, and that helps people realize that dementia is not some remote, improbable problem that happens to persons who were not using their brains; dementia can happen to anyone, and has happened to reputed writers, rulers of countries, even Nobel-prize winners. (Examples include Sir Terry Pratchett and Ronald Reagan)

But I’m writing about persons with dementia who share their experiences in an ongoing way in public, not once or twice in interviews, but repeatedly through blogs and sites and forums. They write books and publish newsletters and run support groups. They create sustained campaigns to help others understand dementia, they give talks, participate in seminars and forums and committees, and describe day-to-day personal experiences for months and years. They may share incidents of their fears at night, their hallucinations, and their confusion in family gatherings, their increasing inability to handle new situations, their frustration at unsupportive infrastructure or insensitive people. They also talk of what they can do, their outings, what they enjoy, and so on. They make suggestions on what helps them in interactions, and what hurts them. They help us understand what sort of dementia aware environments would empower/ support persons with dementia. Persons like Norm Mac, Rick Phelps, Dr. Richard Taylor, and others.

And in addition to those who speak up in public, we have more voices in closed forums, which provide safer places to interact and support each other.

Before I “met” these persons, I had not heard voices of persons with dementia. My mother would mention a few things once in a while, but for most part, her dementia frightened her and she preferred not to talk about her problems. I had not met anyone else who had dementia and spoke openly about it. Even now, while I have read dementia experiences from outside India, I have not read any from India. Nor am I aware of any focused effort in India to encourage persons with dementia to share their realities and incorporate their ideas in design of systems and services. If there are such initiatives, I would love to hear about them.

Of course, persons vary in their experience of dementia, and so we need more voices to get a range of first-hand experiences. Hopefully more patients will find the environment supportive enough to open up. Even so, there are limits to what we can learn because, as dementia progresses, it affects communication and the ability to analyze/ remember. For example, we may never get data to understand how persons in late stage dementia experiences their decline, though caregivers and professionals may have conjectures about it, and persons in earlier stages of dementia may project their current experience to estimate how they will feel later.

In a way this reminds me of how 24-hour home caregivers often lament about people around them (friends, relatives, colleagues, even professionals supporting dementia care): “They just don’t understand what such caregiving involves” and “only someone going through this can understand.” I guess that holds just as true for understanding what it is to live with dementia.

Here’s to hoping that we’ll hear more voices of those living with dementia, including voices from India, because experiences vary across settings and cultures. And here’s to hoping that there are more and more safe, open spaces where such valuable sharing is possible and honored.

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Personal update: A year after my mother’s death

My mother died one year ago; while I have earlier posted updates on how I’m coping with the transition and what I’ve being doing, it’s time for me to post a consolidated personal update. Here goes…

I’ve written a lot about my mother in the past. I’ve shared memories of her as a person (including my childhood with her). I have lived with or near my mother most of my life, and been with her all through her dementia journey, and I’ve, over multiple posts, shared episodes of her dementia journey in this blog. I don’t really have much to add to that right now, and I’ll use this entry to share, instead, my experiences of this last year as I have tried to find my way in a life without my daily interactions with her and also without the caregiving that had become so integral to my day and personality.

Firstly, over the course of the last year, I experienced no dramatic transitions; while some days were better and others worse, there was no overnight paradigm shift that revealed a new identity or direction in life. When my mother died, my day’s structure and activities changed overnight because I no longer had to look after her or plan/ worry about the care, but I had no instant answers on how I’d fill the cleared out spaces. My identity today remains fuzzy, as does my direction in life (though less fuzzy than it was year ago).

There have been changes, of course. I can see plenty of differences in my emotions and mindset today with respect to where I was when my mother was alive.

A year ago, my life centered around dementia and care in two roles: one, as a caregiver for my mother, and two, as a person sharing caregiving experiences with other caregivers and trying to help them. I had no other role/ identity. Of course I was doing other things, too –I read books (gobbled them may be a better way to express the truth), I took long walks, I did jigsaws, I saw an occasional movie DVD. But those were not how I defined myself as a person and not what I saw as my “work.” With my mother’s death, one part of my role/ identity collapsed overnight (caregiving for my mother) while the other (supporting other caregivers) continues.

One immediate consequence of my mother’s death was extreme disorientation. I’d become used to remaining available for my mother, never venturing out to any place unless it was a short drive back. I always carried my mobile, even for a five minute trip to a shop to buy bread, always ready for a call informing me of problems/ emergencies. After her death, I found a “snap back” elastic within me, forcing me to stay within that previous drive-back-distance limit, with tremendous anxiety and guilt (irrational, but no less real for that). The impact was intense and physical, and would hit me every time I went out of the house. This snap-back was extremely intense in the weeks after her death, and persisted in a milder way for months.

I’m relieved to share that this snap-back type of disorientation kept reducing over time, both in intensity and frequency, and has almost gone now. I am still reluctant to go out after 7pm, but other than that, I am okay. But given that people expected me to shake free within days (they’d say, you can do anything now, you are “free”), my opinion is that people grossly underestimate the time and effort required for an emotional rewiring after physical circumstances change.

Then there have been these memories of my mother…

While she was alive, because I was in daily contact, I was anchored to her reality and did not have the time, energy, or need to recall past memories related to her. Her death removed that anchor to the present. I found myself rudderless in terms of a context to think about her. Memories from childhood and my youth all rushed at me with equal weight and validity. I found this distressing and disorienting. Good and happy memories made me nostalgic and I felt a great sense of loss. Bad memories (my mother was not a perfect and neither was I, so we had our share of clashes) brought back restlessness and regret about issues/ grievances we never smoothened out. Both types of memories, good and bad, were disorienting and left me anxious.

In the past year, I have also met many persons who knew my mother, and their recollections of my mother has affected me. Some were her peers, and are active and fit; chatting with them made me acutely aware of how my mother could have been without her dementia, reinforcing my sense of loss.

Frankly, I’d not expected to have problems of closure, given that I’d been with my mother all through her dementia journey and that the last several years had involved acceptance and peace. This rush of the past unnerved me. It has taken months for these resurgent memories to settle down to a level where I can cope with them. They still occur, but the frequency and intensity has reduced.

I have also shelved my idea that I would create a memory box with her things (an idea I mentioned in an earlier blog); I cannot handle that work yet.

A very strange experience I’ve been having are intense anxiety episodes–they have reduced over time, but I am not yet free of them. Even today, I sometimes wake up with a horrible feeling that something’s wrong or about to go wrong, and that it is related to my mother. The doom seems imminent. It takes several seconds to remember that she’s dead so I don’t have to be anxious about her, but even after that, the anxiety takes a while to subside, and traces linger for hours.

I’ve been trying to work my way out of these experiences, and also been examining how to carve out my future.

I had not planned for my life after my mother’s death, because any such plans/ dreams could have distracted me from my role and caused me to resent my caregiving work and responsibility. I had a few vague ideas on things I’d like to try, but nothing clear, tangible, prioritized. After her death, many persons told me that I could now do whatever I wanted, now that I was “free” and not “tied down”. But removal of some activities and responsibilities from the day does not automatically confer the mindset and energy to use the cleared up spaces. How does one do what one wants, if one is not clear of what one wants?

A major problem I am facing is lack of energy. All my life (except for a period when I was quite ill), I’ve had abundant energy. It was not always positive energy, sometimes it was excessively negative, but energy as such was never in short supply. This last one year I’ve been so low in energy that I sometimes fear I’ll never recover my drive and energy and that I’ve changed in an irreversible way.

Even outings and vacations are tiring. I go for an outing, and though I enjoy it I don’t feel refreshed when I return; instead, I feel I’ve been working hard at “Project Enjoyment” and need a vacation to recover

I’d like to add that every caregiver is different, the situation around the caregiving is different. Grief and loss and the process of healing, recovery and rehabilitation vary from person to person, but there are commonalities, too. I’ve been fortunate inasmuch as I’m in touch with other caregivers who are coping with bereavement and know that my experiences are not exceptional in either range or degree. Many caregivers, after months or years of their loss, continue to feel anxiety or disorientation and remain uncertain about what to do next. The impact is highest for persons whose lives were woven around caregiving and who saw the severe deterioration at very close quarters. Even within the same family, others who were not as involved or as close to the person who died have different recovery pace/ paths.

Unfortunately, as this process of recovery and readjustment is internal and private, it is common for others to underestimate its duration and intensity.

Within a week of my mother’s death, I met persons who were gung-ho on my behalf on all I could do now because I was “free.” They had an air of rejoicing when they told me to “move on” and “have fun.” They also expected me to snap into a new direction right away. One person was surprised when I said (this meeting happened a week after my mother’s death) that I was unsure about my future plans and would need a few months to decide and that longtime caregivers could take a year or more to feel normal again. “That much time!” he exclaimed.

I’ve known caregivers who were so numb at the death that it took them over a month to be able to cry…

Books on bereavement and grieving (yes, I read some) also often say this process could take years.

I think everyone has a visible, outer personality which people see, and the inner, private one which feels anxiety, fear, insecurity, and needs healing. While interacting with others, we smile, act social and polite, try to be active and “positive,” even if inside us we are struggling with disorientation, anxiety, dips of energy, confusion, and a whole set of stuff considered “negative.” At times, the gap between the outside and the inside landscape is so large that life seems to be a double-role. And at times, the more private, insecure part spills over and becomes visible…

The problem is, we see only the outside part of others, and so if we are feeling confused, disoriented, or anxious or irritable, we may feel we are the only persons with this dark, small, vulnerable inside. We think everyone else handles loss much better, and that we are being inadequate and negative and are disappointing people around us.

From what I see around me, it seems that society expects people to be reasonably active and positive within a few weeks, or maybe a month or so of the death. After that socially accepted grace period, people start saying things like, “when will you move on,” and “she’s at peace, why can’t you move on,” and “come on, be positive, you are free now,” and “snap out of it now, for heaven’s sake” and “when will you get normal” and things like that. Perhaps these statements reflect a general discomfort that people have while interacting with a person who is feeling “low.” Because they don’t know what to say or do, they are tempted to dismiss feelings and they say things that would stop persons from expressing their grief. Or they avoid the person till enough time has passed and they need not mention the bereavement.

Any trauma needs time to recover from. I suspect that anyone (not just caregivers) who has undergone something traumatic/ been bereaved gets sympathy only for a limited time window. People around them “cut them slack” for just a few days or weeks. Understandable, of course, but I feel that this socially normal duration is far shorter than what the person may need. And the grace period assumed is probably even shorter if the person who died was very ill and fully dependent, persons about whom neighbors, relatives and friends feel justified in saying that the person “is better off dead” and “death must be such a relief.”

Anyway, returning to my personal update…

So yes, there is a visible me that is active, cheerful, doing things, seeming positive for most part. And there is an inner me that tries to cope with disorientation, swings of irrational anxiety, low energy, and confusion about identity and roles.

I’ve made progress in reducing the confusion of the inner me, though there is a long way to go yet.

For the past three months, I have been organizing and consolidating the resources I have created for dementia caregivers. Based on past emails from caregivers and my notes on phone interactions, I have modified and enhanced my existing resources. For example, sometimes persons sent in queries for which answers are already available on my site, so I added more questions in my FAQ and modified pages to make related links obvious, or added some more information. I have checked my to-do lists and wish-lists, completed most items and added the remaining to a new wish-list. I’ve also put in behind-the-scenes technical work to streamline my maintenance effort later. It’s been slow and tiring work.

Sometimes I feel that this cleaning up and consolidation effort is the right way to organize myself and free mental resources; at other times, I fear that I am using this consolidation as a rational, legitimate-sounding way of procrastinating

About my future activities, I know that I will continue to provide support to dementia caregivers in India through creation and maintenance of online resources, but I’m still in a flux about what else I want to do and how I’ll combine all the things I want to try out.

I’ve always been a curious person, and I enjoy learning new things. But time is always a constraint, and my current low energy poses a problem. On some days I feel excited about what I want to try, then I feel overwhelmed about how can I ever fit it all into a day or even decide what to start with, and finally I reach the other end of the pendulum swing where I tell myself that I don’t need to do any of this, why bother!

This is not to say I haven’t tried anything I tried traveling and sightseeing and found I don’t enjoy the malls in other cities any more than malls in my city, and I’m not into history or religion or eating different cuisines from local hotspots, but I love walks of all sorts. I’ve gathered material for learning new things, too, and begun experimenting. I’ve decided against some areas I’d earlier considered interesting but which didn’t excite me when I tried them out. My future activities are still nebulous, but not as nebulous as they were earlier.

Overall, it’s been a slow year, tentative, shaky and difficult. I’m not unhappy with my recovery pace, but it definitely has been difficult and long-drawn and I’m not out of that phase yet. I find it daunting to face multiple possibilities while I am coping with disorientation, emotional swings, and plummeting energy. I continue to be gentle with myself, though, and hope things will keep evolving.

Related Posts/ Links

• The dementia care related work I do
• Impermanence, Death, Closures and Continuity through Body Donation
• Disorientation, memories, adjustments, new realities: two weeks after my mother’s death
• Three months later, musings on identity, directions, habits, possibilities
• Seven months after mother’s death: updates and musings
• Stepping back, stepping forward into a new year
• My mother: a collage of memories

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FAQ on Organ/ Body/ Brain/ Eye Donation

This post provides basic information on organ/ body/ brain/ eye donation using an FAQ format, and includes links to sites with more information. It contains general information for the convenience of readers, and is NOT provided as expert/ authoritative advice, so please consult appropriate authorities as required. Decisions regarding donations are deeply personal, and this post does not attempt to advocate donations or enroll potential donors. I have no intention to persuade you about the merits or demerits of donation. Also, this post is written for the Indian context.

Why this page: After my mother died and I donated her brain, eyes and body, many folks contacted me with queries that indicated conceptual confusions about types of donations and about the practical aspects of donating. I looked around for several months for a website I could refer them to, but most sites focused only on some types of donations or were geared towards enrollments, and did not discuss practical issues/ procedures applicable in India. So I decided to create this post.

• What is body donation?
• What is organ donation (and/ or organ transplantation)?
• What is tissue donation (including eye donation)?
• What is brain donation?
• Some people say organ donation can be done after death, some people say it is after brain death. Is brain death the same as death?
• I want to donate my organs for transplantation after I die
• What is the procedure for donation?
• I am very confused about death certificates for normal death, and the procedures around them.
• What is the registration/ death certificate issue procedure that the municipal authorities use?
• I guess my doctor will tell me what I need to do for all this.
• If the death takes place in a hospital, they’ll handle all this donation business if we ask them, right?
• So if I want everything donated, in what order do I go about it?
• What are the advantages of enrolling in donor programs?
• How do I get a donor card?
• I sometimes meet people who say they are donors. What does that mean?
• Does every enrollment result in donation?
• Within how much time after death must the donation be done?
• All this sounds very intimidating. Does anyone ever manage to donate!
• I am keen to donate my body/ brain/ tissue/ organ but my family is not willing
• I want to know more about tissue (including eye) donation, body donation and organ donation. I want to read/ hear about persons who have actually made such donations

What is body donation?

Body donation is the donation of the whole body after death, for medical research and education. (See wikipedia page: http://en.wikipedia.org/wiki/Body_donation)

Usually, this is done at a medical college (teaching hospital) and the body is used by medical students to study anatomy. It is also possible to donate a body/ some specific organs to specialized research institutes that may want to study a specific medical condition.

Body donation is different from organ donation.

Some serious challenges faced in real-life dementia care situations

Over the past few years, I’ve connected with many fellow dementia caregivers and they’ve shared their personal situations with me even though it was clear that in many cases, I could do nothing but listen. While I can provide some information on dementia and caregiving tools and share some tips, I cannot help counter their major real-life problems, like when they develop back problems because of strenuous care tasks, or they exhaust savings and family silver over expenses, or when their siblings threaten to file property cases against them even as they are fully occupied looking after the person with dementia.

Looking around me, I find very little acknowledgement of several major problems that caregivers face. I mentioned this to a volunteer once, and was told that they could not help in these problems so why talk about “negative” things? Another person said such situations were “exceptions” (but had no data to support this perception). According to me, when low visibility could be driven by shame/ diffidence/ fear of being criticized or of being seen as negative, we cannot assume that the problem is rare. The problem may be common but well-hidden. Unfortunately, hidden problems don’t get attention…or solutions…

In the past I’ve tried to give visibility to real-life caregiver situations by publishing detailed interviews on my website, but I think it’s time to put together a post to acknowledge some problems that don’t get space and exposure.

Three areas that I find where caregivers face major problems are:

• Severe shortage of money
• Lack of support from family/ friends. No one to ask for, no modality to take a break
• Family members may not be fit enough for caregiving or they may lack the aptitude

Severe shortage of money

I’ve talked to caregivers facing severe financial crunch. To outsiders, they appear like normal middle-class “people like us”, but in the confines of their homes they struggle for even basic expenses, their savings gone, their known sources of income down to minimal or about to stop. They don’t talk of this to others — perhaps out of privacy/ shame, or perhaps because they don’t want people to think they are angling for sympathy or money.

On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

Around this time last year, I was in touch with a caregiver who was trying to cope with a father’s fronto-temporal dementia. In addition to watching his decline, this caregiver was also struggling with regret and frustration; the diagnosis had been delayed because senior specialists missed it, and the family had wasted several months in bewilderment and emotional flux wondering why the father had changed so much. If they had known the diagnosis earlier, they would have been able to accept and support the father’s situation better.

Over the year since this incident, I’ve been especially alert about such cases. (This caregiver’s case, incidentally, was not an isolated case, and I have blogged about similar concerns earlier). Of course, there will be missed diagnosis for any disease, but the problem is when diagnoses are missed because of systemic misinformation and stereotypes, not merely by chance. The human cost of delayed/ missed diagnosis–misunderstandings, anger, sorrow, conflicts, and no idea how to support–can tear apart a family.

In my opinion, too much of the publicity around dementia centers on Alzheimer’s and memory loss, and too much of the depiction focuses on elderly patients. Many people, including doctors, therefore assume that the early symptoms of dementia must include memory loss and that dementia hits only the elderly. So when family doctors are consulted for a fifty year old with problems like personality changes, odd social behavior or inability to name familiar objects, they may look at stress, family conflicts, and psychiatric problems. They discard even a remote possibility of dementia because “there’s no memory loss.” Such missed diagnoses can be avoided if we redesign our awareness campaigns.

Experts have increased their earlier estimates of the percentage of young onset patients and of non-AD dementias like FTD (fronto-temporal dementia/ degeneration). But existing campaigns continue using phrases like “dementia is a disease of the elderly” and “dementia is memory loss.” Many people use “dementia” and “Alzheimer’s” interchangeably. Deeply ingrained habits require motivation and effort to change, and perhaps volunteers/ professionals involved haven’t yet seen the need for that effort. But the way I see it, such (inadvertent) exclusion/ profiling contributes to poorer visibility and thus in poorer diagnosis, which in turn hides the true prevalence of the ignored segments. People don’t think “exceptions” exist, so they are not alert about them, they don’t detect it/ diagnose it, and then, because the diagnosed cases are low, people feel justified in ignoring it. It looks like a vicious circle.

Take FTD (frontotemporal dementia/ degeneration), a group of dementias that impact the frontal and temporal lobes.

Platitudes, shame-and-blame games, and avoidance of introspection on complex causes

I’m concerned at the way some persons associated with the field of elder/ dementia care spout platitudes and stereotypical blame/ judgments in public and social media forums. I know these people mean well, but from what I understand, such statements don’t convey anything new or useful. Worse, they may harm the situation, for example, they alienate many family caregivers who feel defensive and may hesitate to ask for information and help, assuming they will not be understood and will just be criticized as persons who lack sufficient love, duty, or culture.

I hope my statements in this blog don’t offend anyone; I am merely sharing my thoughts and opinion as a possible area to ponder on. Let me explain my concern.

Let me take platitudes first. I think platitudes are simplistic but often considered so correct and profound that they stop people from clear thinking or deeper investigation into possible causes and solutions. They have a preachy “you should” in them, but nothing helpful in the form of suggestions on related “this is how you can”. And because they are simple one-liners, they ignore many relevant aspects that affect relationships and care.

Take, for example, statements like “our parents sacrificed everything for us,” and “our parents gave us love, we should love them” or “our culture respects elders” or “we must always make our parents happy.” I’ve yet to meet anyone who disagrees with them, at least publicly. Prima facie, these seem good and moral and cultured. More important, it seems like all we need to do is love and respect and care for our parents like any good person should, and there would be no problem at all.

The reality is far more complex, both in terms of the complicated family relationships and in terms of the difficulties adult children face while handling multiple responsibilities and making compromises and choices.

Let me take just one aspect to elaborate–an implicit assumption that anyone, just by virtue of crossing an age threshold and having a child, is an unquestionable model of great parenting and selfless love.

Many of us in India have recently viewed a series on TV that talked openly of some problems usually swept under the carpet–things like female foeticide, dowry harassment and related violence/ killing, parents forcing children to marry, sexual abuse of children by elders and guardians, domestic violence. Who does these acts? Are there no elders amongst the perpetrators? And do they all die before they cross the age of sixty? The TV program provided alarming data and statistics regarding the prevalence of these problems. Though the show audience looked surprised when the data was presented, I’m willing to bet that most of them were well aware of these problems, and have seen them in their immediate family/ social circles, or even experienced them personally.