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

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

A year later: One year of care for a bedridden mother

Last October, my mother became bedridden, a consequence of the progression of her dementia. Frankly, I had always dreaded the possibility of taking care of someone so fully bedridden, and everyone I knew dreaded such a state, too. With a year over, I guess it’s time to share how she reached the bed-ridden state and how home care for this has been this last one year.

Looking back to the months before she became bedridden, I am surprised we didn’t realize how much she was deteriorating. She was facing obvious problems while walking; she would not lift her legs, even on being prompted. She would drag a leg only after a lot of coaxing, not lift it. Sometimes she would move the same leg twice; for example, she would move her left leg twice while the right leg stayed back, and we had to yank her upright or she’d have fallen. Every trip to the bathroom was an ordeal for her and for us, and soiling became common. She reduced speaking, and barely showed any interest in anything. We hoped she would improve, and kept trying to talk to her, playing games, and so on, telling ourselves that she was tired.

On a day in late September, while sitting in a chair she fell sideways at a strange angle and bumped her eye on the chair’s arm in a contortion a circus performer would have envied. The eye turned alarmingly bloodshot; frightened, we called the doctor who prescribed eye drops to start on and then came for a visit. She examined the eye with her torch and told us she didn’t think there was any deep injury, but recommended we get my mother checked up the next morning by a specialist who would have the right equipment to do a proper check. So next morning, there we were, at a hospital, my mother in a wheelchair, flanked by us.

Everyone at the hospital was very nice to us. The attendant who pushed the wheelchair talked sweetly to my mother, the receptionist talked sweetly, the nurse, the doctor, the doctor’s intern, all were extremely helpful. My mother looked piteously at them and held out her hand; by turns, they took her hands and squeezed it reassuringly.  We confirmed that the injury was superficial, and that nothing needs to be done, and came back.
Read the full post

Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
Read the full post

Moving forward as a caregiver, accepting new realities

I use this blog as a means of introspection, mainly with respect to my caregiving role and its impact on my choices and attitude. As January draws to its end, so does my month-long one-blog-a-day exercise it is time for me to consolidate my thoughts and get ready for the year stretched in front of me.

A number of my blogs so far have described the current status, and examined the past to see what  I did, and what in hindsight), I would do differently if life pressed rewind. And it now makes sense to see what lies ahead to incorporate all I discovered about myself into my future.

One lesson I have learned is that there are no easy answers for what is right or wrong, but being better informed about the various option, and their pros and cons, will allow me to make choices I remain comfortable with, even in hindsight. So yes, I will read up more on topics that are relevant now.
Read the full post

some things are always difficult

A friend, whose father is in his nineties, is currently overwhelmed because he is in the hospital with multiple problems. As she runs around, trying to get him all the care and attention he needs, she is praying hard. I wish her all the courage she needs to face this and do the best she can, and with a sense of peace.

The fact is, seeing a parent (or anyone we care for) in a serious condition is always difficult whenever it happens, however much one can see it coming.
Read the full post

beyond acceptance in caregiving–the journey through unknown territories

When I was twelve, a palm-reader told me most authoritatively that I would travel extensively through unknown lands after I crossed the age of forty. I believed him, especially when an expert astrologer said much the same thing based on my janampatri (birth-chart). Then, at forty, when I should have been planning my world tours, I got drawn into caregiving, and I said, well, so much so for all those predictions 🙂

Looking back, though, caregiving has been a journey through unknown lands, albeit of the internal kind and not quite the sort I expected. Like any adventure, it has involved unexpected situations and needed creativity and improvisations, and below I am sharing some of the landscapes I have viewed…

The landscape of parents, seen as a fellow-adult -Too many of my friends and colleagues stay ambivalent in their attitude towards their parents. Some dislike them, even hate them, and never get the time (or energy or will) to resolve this in time–it rankles inside them for years, and sometimes becomes a core that is so heavily shielded they don’t venture anywhere near it.  They react to their parents as if they were still children being imposed on, and move away physically/ emotionally as soon as possible, staying distant. The discomfort is palpable.
Read Read the full post

moving beyond the five stages in caregiving

When I started this blog, I planned to make entries daily, or at least weekly. My year-end consolidation, however, shows all of five entries in almost seven months…tsk tsk…

So I have resolved to blog daily for the entire month of January 2009 to get into a habit of blogging.

That said, I was sorely tempted to leave this entry (1 down, 30 to go) with just this announcement, but that’s cheating. My intent of blogging is to share and introspect, and just announcing that I will blog every day for each of the 31 days of January meets the count of my goal, but not the spirit.

So, here’s a non-trivial entry on a topic that’s been buzzing in my mind… my new perspective on caregiving.

Over the last several years, caregiving has come to occupy an increasing part of my day, in terms of time, effort, mind-share. This is not what I trained for, not what I dreamed of, and definitely not what I can say I “signed up for” when I started on my life. It is a role thrust on me, and for the initial part I handled it with a mix of resignation and resentment, with huge dollops of helplessness and despair. Energy spikes of a job well done were extremely rare; the down-in-the-dumps feeling rode high. I had to make too many changes that were major, and that I considered compromises and defeats and deviations.
Read Read the full post