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; 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). And I have, 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 adjust after her passing away.

My mother’s death was a major shift for me not just emotionally but also because I no longer had to coordinate her care. A year ago, most of my life centered was centering around my mother’s care and also my efforts to help other caregivers. This was my main form of self-identity. Of course I was doing other things, too — I had other work and responsibilities, 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 my self-identity was closely knitted around my mother’s care, and this part of my role/ identity collapsed overnight.

One immediate consequence of my mother’s death was disorientation. I’d become used to a constant state of alertness about her, expecting any crisis to happen at any time. I always carried my mobile, even for a five minute trip to a shop. That I no longer needed to remain alert was very odd. I would feel vaguely guilty that I no longer needed to keep her in my mind all the time. I even have intense anxiety episodes  sometimes–for example, waking up with a horrible feeling that something’s wrong or about to go wrong, and that it is related to my mother. Even after remembering that she is dead, and telling myself that, the anxiety takes a while to subside. I’m relieved to share that this disorientation and anxiety has kept reducing over time, both in intensity and frequency.

Then there have been these memories of my mother. While she was alive, I was anchored to her current 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.

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.  So yes, I now have some clear spaces in my life, but I have not experienced any paradigm shift. I’ve realized: 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 return without feeling refreshed, almost like I’ve been working hard at “Project Enjoyment” and I now 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. 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.

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. I suspect 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, in terms of future directions…

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 🙂

As of now, I expect 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! On the plus side, I have tried some new things, found that I may like some, and that I don’t like others. Vacations and sightseeing, for example, don’t interest me much; I have 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 have plans to try some types of craft.

Overall, I’m not unhappy with my recovery pace, but it has been more difficult and long-drawn than I’d hoped it would be. I continue to be gentle with myself, though, and hope things will keep evolving. And my future activities are still nebulous, but not as nebulous as they were earlier.

Related Posts/ Links

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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.

I try to keep this post updated (last update date: 13 Aug 2020) but some highlights of common queries/ problems I encounter are also discussed in Voluntary body donation: some thoughts in response to queries I get.

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.

Read the full post here

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

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.

Read the full post here

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. Read the full post here

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.

Read the full post here

Stepping back, stepping forward into a new year

A new year begins. Here’s to hoping that all of you who believe that such beginnings matter are finding yourself poised well for the future, happy with whatever you’ve decided to do or not do, or happy that you shall not decide and let yourself go on with the flow. And hoping, too, that what is available to you–time, energy, capabilities, moods, support systems, whatever–is aligned to your choices and directions.

In one sense, an year is just another collection of days, with the first day of the year being notional and conventional. But this convention, a beginning marked by a number, also gives us an opportunity to pause and think before we venture forth. It provides us an occasion to consider options and make choices and decisions which we may or may not implement in the year that follows.

To me, new year resolutions have never been a big deal, because I make resolutions and changes even without the year-beginning marker. But this year I am choosing to be especially soft and gentle with myself, the way I often suggest to other caregivers and ex-caregivers 🙂 I am staying free of new commitments because I would like to play with the possibility that I can be curious and explore–and resolutions (even a resolution that determines that I must be curious and explore) can be binding.

For the last few years, I’ve been starting the year with a 31-day blogfest (one blog a day all through January), but this year, I am skipping that blogfest to release spaces within me–spaces of time, energy, mindset, emotions. I shall be continuing with activities I am committed to, both on the personal front and in areas related to dementia care. But hey, I may use the rest of my time to indulge myself in luxurious activities or just do nothing or I may use it to ponder or explore…

I think this could be an interesting year ahead. I hope that is true for you, too.

Till the next post, then.

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Seven months after mother’s death: updates and musings

It is seven months since my mother died, and I sometimes get queries on how I am doing, so I’m sharing an update.

My mother’s death meant I lost the person my life had been revolving around for the last several years. My sense of identity changed. My role, responsibility and activities needed a rethink. Given the sweeping change caused by her death, I think I’m handling my situation well enough.

I am living a reasonably active and productive life. While I have not firmly decided the way I will divide my time and energy across current and new activities, I am clearer now than I was some months ago. Redefining my life activities and directions will take more time, but that’s okay; I prefer to proceed cautiously and experiment with small changes, see what works, what doesn’t, and tweak things rather than do something dramatic and then have regrets.

I continue to face challenges on the emotional front, where my readjustment is slower. I continue to ponder over my new identity, my desires and my possible prioritizations. And, I also try to understand what “moving on” means. I tell myself that while a situation may change abruptly, the related habits and personal characteristics take time to change, and that well-set patterns have an implicit inertia.

My years of caregiving changed me in many ways. I am different in what I like to do, what I find important, what I am curious about or concerned about, what I feel about issues and incidents, what I want to buy or see, and so on. Some of my earlier friends now have life direction, interests, and priorities that are very different from mine, and there may not be enough commonalities to resume friendship. Our paths have diverged, and I am not much in touch with them. I am trying to make new friends, but my somewhat introvert nature makes that tough.

Seeing my mother’s decline and staying emotionally close and connected through the process, is helpful in the process of closure, but even now, not a day passes when I don’t think of her or miss her in a gentle way. And there is a sense of loss I experience when I see how she spent her last several years alongside how her peer group is faring.

In the past few months after her death, I have met my mother’s friends and peers, many of them after several years. They ask me about her last few years, or start telling me stories from their shared past. And they bring back memories of a mother who was younger and more active. As I talk to these friends of my mother, I notice how, though they are my mother’s contemporaries, they are physically active and cognitively sharp. I become acutely aware of what my mother could have been like without her dementia, and how different our interactions would have been. It hurts.

It will take time to find my new equilibrium of friends and interests and to find my peace with the overall loss. I also know this will need effort on my part, and this is what people call “moving on.”

But what is “moving on?”

I sometimes have people advising me that I should not think of the past and “move on” and forget what happened because now I am “free.”

I find that approach strange and unacceptable. It assumes that my life was a black hole when I was a caregiver, and that is not true. My years as a caregiver are an integral part of my life. They had their ups and downs, like any other phase of life has. The years involved work, responsibility, and tension. They also gave me the fulfillment of staying emotionally connected to my mother, they taught me many things about life, identity, joy. They changed my perspective about what matters and what does not, what dignity is, what connection is, and so on.

As far as I understand, “moving on” is something that happens all the time, for everyone. I think any “moving on” can be robust and wholesome only if it involves resolution and peace and consolidation of lessons learned. It cannot be achieved by amnesia or denial or pushing the past under the carpet.

Anyway, I have started consolidating my dementia care thoughts and my experience sharing, hoping that sharing and structuring will help me neaten my mind and perhaps help others. As part of this, here’s one e-interview (A Caregiver’s Role) and below is a video where I share my late stage dementia care experience. (You can also view it directly on youtube here.)

Main links referred to in this post

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Creating online dementia care material in Hindi: my experience so far

For the last few months I have been making Hindi material for supporting dementia care and uploading the material to make it available online. Here’s a short blog entry on my experience so far.

The background: Over a year ago I started worrying about the paucity of online (and print) material in Indian languages for dementia caregivers. This “worry” was active enough for me to wonder what I could do about the lack of material. My concern was spurred after someone in Madhya Pradesh contacted me – he was using Internet on his mobile and wanted material in Hindi so that he and his family could better support an early-onset dementia patient. I helped him through phone calls and by sending across some material I had. However, I felt concerned about how difficult things must be for someone like him who wanted support. Around July/ August last year I started exploring options for creating Hindi material myself. A few months later I made my first Hindi video and placed it on youtube, and in December I shared my thoughts and experiments in a 4-part blog entry (For part 1 of this series, click here: Adventures in Hindi Part 1).

Creating material in Hindi was not easy work. I did not have conventions to follow about the type of Hindi and the way dementia is explained in Hindi; I had to base my decisions on approach and style on the experience I’d had providing help in Hindi over the phone and in person, and, of course, my instinct as a caregiver and a volunteer. Typing posed its own challenges, as typing in Hindi is done using transliteration, so one has to remain alert about when this transliteration messes up spellings. Plus, of course, my Hindi needed brushing up.

One more deterrent was knowing that creating online material in Hindi was essentially a gamble. I knew people checked online for cricket scores and gossip about superstars in Hindi, but I had no idea whether people were looking online for information on dementia in Hindi. Even if there were such people, I had no idea how to let them know about my site so that they could check it out for at least some pointers to help them.

But I can be stubborn when I want to, and so once I decided to try my hand at it, I continued to create and upload stuff in Hindi, let some people know, and leave the rest to word-of-mouth, google, cross-links….

Here’s the current status of my Hindi work online: I have created a full-fledged website in Hindi on dementia care (Dementia Hindi ) and also uploaded four videos on youtube on wandering, helping patients with daily activities, communication, and understanding the relationship between dementia and Alzheimer’s (they are also combined into a convenient playlist: click here: Playlist: Hindi dementia/ care uploads). My latest video, on dementia and communication, was uploaded just a few weeks ago. Here it is:

So, what’s been my experience so far?

I’m relieved (and happy) to say that people have been visiting the Hindi website and viewing the videos. Not in droves, no, but enough for me to feel that the effort was worth it. Especially so as some visitors are from far-away cities I have no contacts in, such as Jamshedpur, Lucknow, and Indore in addition to the expected Delhi and Mumbai. Not all visitors are from India, interestingly, and apart from places like the USA and UK, I’ve also had visitors from the Nepal, Qatar, UAE and others 🙂 Some persons have even contacted me using the contact form, sending their queries in Hindi (typed using Roman script). (I responded the same way).

The videos have been viewed, too. Anyone who has checked out youtube for dementia information in Hindi would have noticed that available material (other than mine) is usually dubbed interviews, and some translated authoritative informational presentations. Overall, the list is so small it takes barely a couple of screens. So when I uploaded my videos, I had no clue whether anyone would even reach them. But of my 4 videos, 3 have been up for some months, and each of them has a viewership of over 200. Is that good enough? Is it bad? What number does one compare it with?

It is not as if there is a wide choice of Hindi material and I have a baseline to compare it with 😦

The way I see it is, this viewership is encouraging enough for me. It is far more, incidentally, than zero, which is what my viewership would have been if I had not put up the videos. Even without any direct touch with people/ publicity, even without press releases and conferences declaring the presence of this material, people reached it and read/ viewed it. And hopefully benefitted…

The beauty of online material is that once it is up and available, it remains available without additional effort, and so more and more people can view it as and when they become aware of it or get a link or locate it in a search.

My summary so far is that yes, there seem to be persons who will read material or view videos in Hindi (and possibly other Indian languages) if these were made available. I think catering to this potential audience is just not being taken as seriously as it deserves.

I’d also like to share that I sometimes meet volunteers in India who feel that there is already enough online material on dementia care and nothing more needs to be done on this front. These volunteers are often part of forums where they regularly exchange links to the same articles, recommending them to each other (not always reading them, but assuming others would benefit by doing so).

I feel these people haven’t considered a number of aspects. For example, they may not have considered whether the available material is:

  • understandable and usable by audiences in India (fitting into the cultural context)
  • in languages that people can read/ understand )
  • with links in forums such people can access )
  • accessible on the type of online platforms such audiences use )
  • accessible to people not in metros )
  • accessible to people who don’t have online access/ find it expensive)

I could expand the list into a much longer one, but I’m sure you get the point 🙂

I remember a comment one person made after he read some of the standard caregiver material he’d downloaded from one non-Indian site; he said he’d shown it to his family but they discarded it because the persons it showed were not Indians and the houses they showed were not middle-class Indian and the methods they described were not directly usable in India. (Like bathing tips that assume baths in tubs, I suspect) “We are not like these people; their ways won’t work for us,” he told me. His comment reinforced my impression that a good caregiver manual written by an Alzheimer’s support organization in some other country cannot always be used directly by all sections of people in India.

So, in my opinion, there is not enough suitable material in India given the diversity of our people, the sheer number of languages, the geographical and economic spread, the enormous awareness gap to bridge and what not. The gap between what is needed and what is available seems huge to me.

And here is my request to you, whether you are a volunteer or a caregiver who has experiences to share: if you are comfortable enough to create material in an Indian language — whether just talking of your experience, or sharing some structured material or some data — please do consider it. The online space is open and waiting for you.

Maybe the material you create or the video you make will not go viral. There may be no award to be won. There may be no appreciation/ brownie points from peers. But the one person who reaches your material could be someone whose life will be made different by reading or hearing what you have to say.

Main links referred to in this post

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Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

Every September, those of us whose lives have been changed by dementia find ourselves introspecting about the environment around persons with dementia and their caregivers. We find ourselves building up hopes that in future, the dementia and care situation will have more dignity, an improved quality of life, and more support. Years of being the main caregiver for my mother has made me deeply concerned about dementia awareness and care in India, and I, too, ponder on these issues.

A few weeks ago, I saw a report that discussed how many existing “frames” used to depict dementia are negative/ unproductive and how alternate frames should be used to depict a positive picture and convey the nuances. Then, as I was still piecing together my thoughts on the matter, I realized that the theme for World Alzheimer’s Month 2012 is “Living together”. Alzheimer’s Disease International also plans to release a report on the stigma aspect. I look forward to seeing that report.

(BTW, for those who unsure of the relationship between dementia and Alzheimer’s : dementia is the name given to a group of symptoms, and Alzheimer’s Disease (AD) is the most common–but not the only–disease that causes dementia. Most dementia-related work is done under the Alzheimer’s umbrella by associations with names that include the word Alzheimer’s (but may not include the word dementia), a nomenclature that sometimes confuses and ends up excluding those non-AD dementia caregivers who assume the material/ advice will be AD specific 😦 )

Meanwhile, I’d like to share have some thoughts, mainly on how dementia/ care experiences are influenced by the culture and images around dementia, how countries differ, and some lessons for the concerned persons, especially my peers in India. These are just my personal thoughts, not an expert opinion nor a “report” based on any “study”…

…and I’d love to hear your thoughts, too.

I see persons with dementia as major stakeholders in any dementia-related strategy. We already have millions of persons with dementia who try to navigate their lives in spite of the disadvantages dementia imposes, and we have millions of caregivers who try to understand and support them (but don’t always manage to). Medicines and research are also important, of course, and must go on in parallel, but medical research cannot be the sole focus. A world without dementia is pretty far off, because hey, we have millions with dementia already here amidst us, right? Also, current medications are few, not applicable for many diseases that cause dementia. These treatments work on some persons but not others, have side-effects for some persons, and do not reverse dementia. It will take years of intense and sustained research to create enough effective and safe cures adequately tested on humans.

In the meantime, many people continue to “Live with Dementia”.

So I really like this year’s theme: Living with dementia. I like the fact that it focuses on people, on their situation and surroundings, and shows sensitivity to the discrimination and stigmas they may be facing. Living with dementia seems like a wholesome focus. Not struggling with dementia, trying to “defeat” it, or “surrendering” to it or “giving up” or being seen as “negative” or “lacking faith.” Instead, accepting what is there, working with what can be done, focusing on improving quality of life, retaining connections, leading enriched lives to the maximum possible extent.

Dementia care cannot depend just on medical support. It cannot even depend solely on the institutional infrastructure available; most of dementia care occurs in home settings. The care therefore depends a lot on the environment around it: the combination of images and stories around dementia, such as how society perceives the symptoms, the conventions for interacting with people showing such symptoms, the available body of caregiving knowledge, perception of the role of doctors and medication, and so on. Published caregiver manuals and guidelines are only a fraction of the environment around dementia care; the overall environment combines multiple factors like culture and religion, information available in articles, credibility of sources, newspaper depictions, depictions in fiction, mythology and movies, the history, and the societal conventions of how elders and people behaving strangely and differently are treated.

Oh, and also on whether that society even acknowledges such persons openly or whether it expects families to hide them away 😦

Let’s consider the dementia journey, which typically spans years, even a decade or two.

Read the full post here

Sharing thoughts with those considering body donation: the importance of preparing

After my mother’s death and my blog entry on how I had donated her eyes, brain and body, I got several queries on body donation. I had planned to do a full-fledged well-researched entry with data on the topic but as I’ve not yet got time for the full entry, I am doing a quick post – talking about what I consider the most important factors in being able to donate one’s body after death.

This post is about the importance of being prepared.

You see, no one expects death to happen. Even when we see someone obviously declining, we are still unprepared for the actual stopping of breath. When that happens, there is a shocking finality to it. And in that shocked state most of us slip like automaton into the stuff that follows.

Luckily for the just-bereaved, there are people around who help. These people–relatives, friends, neighbors, and colleagues—they call the doctor for the certificate, they dress up the body, they spread the word and even handle the condolence calls. These people find out about the nearest crematoriums (or they already have the data), they clear space in the house to place the body so that people can pay their respects, they find out about morgues, and get the municipality forms for registering the death. They know which priests to contact. The bereaved may have to provide some preferences and criteria (I want to wait for so-and-so relative to arrive first type of things), but a lot of the organizational nitty-gritty depends upon the community expertise immediately made available. People even take over the cleaning of the house and the arranging of tea or food or whatever.

Most of what follows the death thus goes according to the typical script. The relatives arrive, things are done in ways that are acceptable to the community. Everyone needs to pay respects, everyone tries to get closure.

So what’s this got to do with body donation?

The point is, there is no large pool of knowledge or experience for potential body donating families to draw upon at the time of death. Relatives and friends (who know what to do under normal last-rituals situations) are clueless on how to help for the alternate form of disposal: body donation. They are unsure of what’s going on, and perhaps unprepared or outright uncomfortable with this deviation from the norm. Relatives who were unaware that the family may consider body donation may mutter a protest or withdraw because of their discomfort. That adds to the overall awkwardness and tension.

Read the full post here

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

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

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

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

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

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

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

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

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

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

Read the full post here

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

Impermanence, Death, Closures and Continuity through Body Donation

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

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

Sharing below some of what happened.

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

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

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

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

She was not breathing.

Read the full post here

Resources for dementia care volunteers now available online

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

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

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

I finally created a special section aimed specifically at sharing resources with volunteers working in dementia care in India: Resources for volunteers helping caregivers.

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

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

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

The section is intended for volunteers who want to equip themselves to understand and help dementia caregivers in India, and includes discussions on the status of dementia care in India and the impact of culture and context.

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

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

(Edited in February 2013: When this post was written, the resource section had been created on my personal site. I have now shifted the section to this blog as part of a consolidation exercise, so that all my experience and opinion-sharing related to dementia is now at one location. The links in the post have been corrected to reflect the correct links)


Edited in 2014 to add: The current pages in this section are as listed below:

Resources: If you want to help caregivers/ spread dementia awareness


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