Voluntary body donation: some thoughts in response to queries I get

These last few days I’ve been updating my FAQ page on body/ brain/ organ donation and I thought it’s perhaps time to also share my thoughts and observations based on the my conversations with prospective donors.

One thing I notice repeatedly is a significant communication gap between the person who wants to donate his/ her body and the family members who will actually have to do the required donation and sign the consent forms.

One example of a gap is when the prospective donor does not want the family to decide how to dispose the body after death. These donors believe that if they have signed up for donor programs, family members will be obliged to respect their wishes. Some such donors even consider a donation enrolment as equivalent of a “will.” Alas, they are mistaken. There is no legal obligation on the family members to donate a body just because the donor wanted this to be done. The next-of-kin decide how the body may be disposed; they select the way (cremation, burial, donation) and rituals depending on what they want (unless the death is “unnatural”, which then involves police and autopsies and stuff).

A couple of persons I talked to were not even on talking terms with immediate family members. They would not inform them of their travel plans or health problems or anything else, and had not told them about their desire to donate their bodies. They were so sure that their intention to donate was good enough to ensure donation happens that they hadn’t paused to think that it was this alienated family that would handle their body disposal after they died. The dead person does not exist any more, and cannot dispose off his own body.

Some donors tell the family what they want, but the family is not convinced. The topic is not discussed much, because everyone is uncomfortable talking about it. Even if the immediate family is almost convinced, the topic is not broached with the larger familial or social circle. Donors don’t realize that this is likely to result in a failure to donate, because once they die, their immediate family members will face social pressure and pressure from relatives, and may find it easier to just opt for traditional modes of body disposal.

One amazing thing I noticed is that in many families, the elderly person is keen to donate, but faces a lot of protest from the children, even children who are scientists and doctors and who theoretically accept that body donation is good. These children cannot imagine Appa or Amma’s body being donated; they see it as disrespect (students cutting a body of a loved one) or hurtful (imagine taking out the eyes), but have no problem with seeing the body being buried or being burned on a pyre. This emotional barrier to donation makes discussion difficult. In some cases, the prospective donors persist till family members come around and agree that they will donate. In other instances, when the children get emotional and agitated, the parents stop talking about the donation.

I recently attended a function organized by one hospital for its registered voluntary body donors. The hall was full of elderly persons who had signed up as donors, but I saw hardly any middle-aged children who would probably have to coordinate/ perform the actual donation. I wondered why these elders were not accompanied by the children if the commitment to donate was a family commitment. It was a Sunday, so attending should not have been a problem. Were these elders living away from their children (empty nests are common now), or were the children not involved enough to come along, or did the elders not even inform them about the function? Wouldn’t this affect the probability of the donation actually happening?

Another thing I have noticed when talking to many prospective donors is that they (and their families) have not spent much time figuring out the nitty-gritties that have to be done to actually donate the body. They remain unclear about who has to be contacted after death, how to get the required certificate from the doctor in time, etc. It’s a morbid topic, sure. Somehow they assume (or hope?) that getting a donor card means the donation will be easy to do and don’t figure out the procedure to be followed as soon as the death occurs (or as soon as the family realizes the person is dead). The confusion and distress that kicks in when someone dies is not factored into the planning. Most donors and their families assume that the hospitals or doctors will guide the family through the donation process when the time comes. They don’t realize that body donation is so rare that most doctors don’t have much experience in it and will not be able to help. It was realization of such information gaps that had led me to create the FAQ page last year (this is the page I have now updated to improve clarity).

Thinking about and planning for body donation takes effort and commitment, because in our current setting, it is far simpler to use the conventional modes of cremation or burial. So a prospective donor’s efforts cannot stop after registering as a donor. Much needs to be done to make sure that this intention converts into an actual donation after death occurs. This includes ensuring that family members are convinced about the donation, and so are persons in the relatives/ social circles. Family members will need to act promptly after the death to coordinate the body donation, which means they need to be very conversant with the procedure and also have the required information readily accessible. Their commitment to actually donate the body must be reinforced periodically, so that it is not forgotten when the need arises. And additionally, planning may require steps like involving the family doctor and securing their commitment, and so on.

Oh, and my updated FAQ page is here: FAQ on Organ/ Body/ Brain/ Eye Donation. It is rather long, but hopefully it covers all areas where people need information. Do let me know if you have any suggestions.

P.S.: In the post above, the discussion on post-death procedures is in the context of normal death (cardiac death). For the other form of death, brain death, the person is already under the care of the team of doctors who declare the person brain dead and will guide the family through the process of organ donation. In brain death cases, organs can be donated if the family is comfortable donating organs of a person who is still on some sort of life support; the procedure is not the challenge as the person is already being tended to in a hospital that is equipped for accepting organs for transplant.

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A personal update: two years after my mother’s death

It is two years since my mother’s death; I guess it is time for a personal update.

When, for years, I was immersed in caregiving, I’d not considered what would happen after my mother’s death–on how I would feel, and how I would adjust to the loss and my changed role and situation. I hadn’t expected the process to be so slow and fraught with confusion. Over these last two years, I have gone through various phases of emotional upheaval and readjustment. The process of adjustment continues.

Two years later, my mother is still a presence in my mind every day. Even if I am not actively thinking of her, I have a faint, dull awareness of her, a sort of feeling something’s missing in my life, a feeling that has taken me time to get used to, but which I accept.

I end up thinking more specifically about her quite often, too. I remember things she did for me, or arguments we had, or things we shared, and it has an air of reminiscence, gentle, sometimes amusing or heart-warming, sometimes mildly sad. These memories are reasonably matter-of-fact, and while not always easy, they seem a part of my past and my personality like many other things.

But sometimes I get yanked into memories that plunge me into a sharp sense of loss. It’s like a sore spot touched suddenly, a spot a splinter lies buried under, unknown to me. The emotion leaves me gasping, exhausted. It takes an effort to emerge from, spanning for several minutes, even hours, and often, though I know the feeling will subside, I still have to ride the wave and cannot rush the pace at which it subsides. These emotional plunges, though declining in intensity and duration, occur often enough for me to dread them.

I am aware now of the sort of events that trigger these disorienting episodes.

Meeting my mother’s peer group, for example, still reminds me of my loss and of the loss she suffered because of her dementia. Sure, life deals out different fates to different people, everyone has problems and setbacks, and even if she hadn’t got dementia, other problems would have happened. Yet I need several deep breaths to compose myself again.

The major trigger for such plunges is related to my continued work for dementia caregivers.

A significant part of my work involves maintaining my online resources for dementia caregivers in India (I have websites/ videos at Dementia Care Notes , Dementia Hindi, youtube videos on dementia and caregiving, and caregiving-related personal interviews). For this work, I keep myself up-to-date with recent discussions and studies on dementia care and also stay on the lookout for India-specific services and facilities. Many caregivers and other concerned persons contact me through my sites or this blog, and I try to share my experiences and ideas with them. During all this work, I am actively thinking of dementia and how it impacts the person and families, and naturally, this is emotionally and mentally tied with my experiences as both caregiver and volunteer.

For most part, while doing such volunteer work, I have sufficient insight and distance to productively use what I have experienced and studied. But sometimes a sentence/ factoid I read or an incident someone relates connects me a hurtful memory or emotion inside me and disturbs me with an unexpected intensity. Some days ago, I was talking to another caregiver alumnus who tries to help other caregivers and spread awareness by sharing personal caregiving anecdotes, and she told me that she experiences similar plunges and pain.

Here’s the thing: caregiver conversations are needed. It is only by openly talking about such things that we can spread awareness and improve the situation for persons with dementia and their carers. For the large part, at least in India, dementia is untalked about and invisible, and caregiver stories remain unspoken and unheard. Dementia awareness remains poor, misinformation remains rampant, and support systems remain non-existent. The number of people who need help is growing faster than sporadic attempts to add support services. This overall status saddens me on some days, and frustrates and angers me on others. It makes me want to withdraw on some days, while on other days, it energizes me to do what I can. I know that sharing my caregiving experiences can be helpful to others — my mother’s death does not mean that my caregiver experiences have become irrelevant — and I wish I were not hampered by hurtful memories.

I continue to search for the optimal level of involvement in dementia care, hoping to find a level where I am effective and productive, and also safe from burnout or depression. It would definitely be easier to do what I want to do if my mother’s memories were by-and-large peaceful, benignly swinging between my experiencing a gentle nostalgia and sensing her supportive and affectionate presence. It seems, though, that time heals rather slowly, and part of the delay is because I continue work in this domain (thus extending and reinforcing my identification with a caregiver identity and related experiences and memories).

When I was a caregiver, my work was determined by factors beyond my control and I knew an end would come. But in volunteer work, I have to set the pace and take the decisions.

Regarding other fronts: I continue to extend myself, experiment, and redefine my understanding of what I want to do with respect to non-dementia-related areas. This adds to some variety and enrichment (and fatigue 🙂 ) I have already realized that travel and sightseeing are pleasurable to me only in small doses. For most part, I prefer simple long walks or curling up with my Kindle. I have resumed professional writing but not yet attempted any ambitious creative writing that requires a larger mental canvas; this will have to wait till I become better at juggling time.

I’ve shared on this blog that I find it difficult to resume a social life, given that I am, anyway, an introvert. In the past few months, I’ve attempted some degree of socializing. I’ve peeped out of my shell and started saying hello, and risking mistakes on this front.

I could say I’m progressing one smile at a time 🙂

And I have been learning some new topics.

I’ve always been a curious person. For the last several months, I’ve been enrolling in free online courses (MOOCs) on a diverse range of topics. I felt like this kid let loose in a candy store, and I sort of overdid it, completing around 20 courses in nine months, and peeking in and attending parts of many more. I enjoyed the concentration and rigor some of the courses required, but yeah, the courses do require time and energy and I am whittling down the courses to a less obsessed level.

So yes, this is where I am two years down the line after my mother passed on: taking moderate steps of venturing out into the unknown, trying to find a sane place between integrating and drawing upon memories of my mother while not getting sucked into them. Looking for peace. Looking for balance. Still figuring out how to pace my dementia care support work so that I can sustain it without draining myself. I suspect this is not too different in essence from folks around me, because everyone has to do some such balancing act, for whatever situations and challenges life throws to them.

And BTW, I have not been posting as regularly to this blog as I used to earlier; this blog already has over 200 entries, and while I have many ideas for new blog entries, actual writing may be sporadic as I balance other work/ commitments, including ongoing dementia care work. You can always contact me if you want.

My online dementia resources (in addition to this blog)

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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.

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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: 14 August 2016) 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

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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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

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

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

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

I’ve learnt stuff since then, though 😦

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

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