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.

Hubby tried to check the breath by holding his finger, and then his mobile under her nose, and started chest compressions. I was there by then, trying to locate the pulse. Nothing. Her eyes were half-open and showed no response. The nurse arrived right then; she, too, checked my mother and said she seemed to have passed away. I promptly called the doctor; he was off for the evening (Sunday, see), so I rang up the alternate doctor, and she said she would be there as soon as possible.

As we waited for the doctor, I placed a wet cloth on my mother’s eyes; she had been particular about eye donation and other body donations. I checked my emergency bag and file and collected all I’d need to take to the hospital. We cleaned up my mother to the extent we could.

The doctor arrived, confirmed the death, gave the certificate. The brain bank was contacted to inform them we wanted to bring the body right away (there is a window within which body donations must be done). We tried to arrange an ambulance; the first party we contacted called back after a while saying their drivers were not locatable (Sunday, see). We managed to order another ambulance. The ambulance man came up with a stretcher; my mother was moved to the stretcher and then carried down six floors with the help of some persons. We followed the ambulance by car and reached NIMHANS, where the brain bank was, and where the doctors expected us and had made preparations to receive us.

I requested that the eye donation be done first, and while we waited for the eye bank doctor to arrive, the eyes were moistened with saline. Then the eye bank van arrived and the doctor got to work. Various consent forms were signed.

The second donation was the brain donation. I had signed the consent forms. The brain removal required a team, so the brain bank staff did the necessary steps to keep the body correctly overnight, and the brain removal was scheduled for the next morning. Hubby and I returned to an empty home, and closed the laptop’s browser windows full of information on gurgling.

The next morning, the doctors from the brain bank called and informed me that the brain had been removed, and that they had prepared the body for its third and final stage: the donation of the rest of the body to the anatomy department of a medical teaching hospital, where I had already enrolled my mother. I handed over my mother’s medical records and her brain scans to the brain bank doctors, in case they needed them while studying the brain. I also offered to provide any other information I had if they needed, assured them I was available, and told them that they could quote me to any potential donor who may want to know what the family feels about such donations, and may want to meet people who had actually done this type of donation.

Unfortunately, the tribe of brain donors is not large…But that is a topic by itself…

My mother died on Sunday evening; by Monday afternoon, we had completed all the formalities of the body donation, and what I had now instead of my mother was a bunch of certificates: death certificate, eye donation certificates, brain donation certificate, body donation certificate. I had seen my mother being slid into a freezer in the college mortuary.

I’ve given the functional account above, and I’ve also had some people talking to me after they heard what I’d done, and it seems that most people assume that the donation part was gruesome/ difficult/ unpleasant/ requiring tremendous courage, so I’d just like to briefly say: NO. The process was not gruesome, not difficult, and not unpleasant. It did not require great willpower or courage either.

Frankly, the donation process was the most beautiful way I could have ended the physical process of my mother’s final journey.

All through the donation process, every doctor I met was not just considerate and helpful to me, but very gentle with my mother’s body. In this final phase of her mortal journey, she was treated as someone valuable and for that I am both grateful and happy.

At one point, I saw a doctor adjust the sheet around her face with such tenderness and concern that I felt he had honored her in a way I can’t begin to describe.

When the eye bank doctor was working, I asked whether I could watch the process; it was the sort of thing my mother would have expected me to watch. I, too, wanted to be there when this process, so important to her, was happening. When at the final stage the doctor was placing cotton and closing her eyelids over it, I remembered suddenly how my mother’s eyes were always considered beautiful. Last year, when sharing memories of my mother in a blog post (My mother, a collage of my memories) I had even mentioned this.

As I watched the doctor use a saline-dipped swab to gently wipe her face, I wondered what beauty really was. So yes, eyes may look beautiful when they are large and expressive, as my mother’s eyes had been, but to me on Sunday at that late hour, it seemed that my mother’s eyes had probably never been as beautiful as they were when they were being offered for use to others to see from.

I knew at that moment that the donations I was signing consent forms for were donations I would never regret, that the whole experience was so sacred and so heart-warming that all other forms of closure paled in front of it.

When my father had died fourteen years ago, I had performed his last rites in the religious way. Being an only child, and though female, I did the steps that only sons are supposed to perform, including the tap on his skull that allegedly releases the soul (I think that’s what it is supposed to be for). Though we did an abbreviated version of the traditional process, it still stretched across days involving long lists of things to be bought from specific markets, coordinating priest timings, and what not. There had been immersion of ashes, havan, prayer meeting, stuff like that. The experience, supposed to bring closure and peace, seemed surreal at times, disgustingly commercialized at times. It left me unhappy, disoriented, and depressed, partly because of the crass materialism of many of the priests, vendors, etc., who tried to wrangle out all they could, and cheat when they could, but also partly because the whole process was so full of sadness and reminders of that.

As a contrast, what I experienced with this process for my mother was happiness and relief that my mother, who had always wanted to be useful, and whose health had thrown up extreme challenges leaving her unable to even communicate–that mother of mine ended her journey in a way matching her beliefs and her life, surrounded by respect and consideration, a fitting end to a great life.

Post referred to in this blog entry: My mother, a collage of my memories

Important note added: After my mother’s death and this blog post, I received several queries about donation, and I have therefore posted a blog entry to address the common queries: FAQ on Organ/ Body/ Brain/ Eye Donation.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

80 Responses to Impermanence, Death, Closures and Continuity through Body Donation

  1. Vijaya says:

    Yes, I agree this is a beautiful ending. Thank you for sharing.

  2. abhaiyengar says:

    Dear Swapna,
    Thank you for this post. You are a true daughter. My absolute respect. I met you so many years ago, but I remember it well. I am glad to have met you in person, even though it was a brief meeting.
    Abha

  3. Shashie says:

    Love and respect through till the end.

  4. anusuya123 says:

    Thanks Swapna. Thanks for sharing this with us. You are one of the strongest human beings I have encountered in my life. Thanks for everything all over again. I wish I had something better to say.

  5. rummuser says:

    Swapna, my heart felt condolences to you and your family. At the same time, my respects to your late mother and your family for what you did after her death.

  6. vanimurthy says:

    Dear Dear Swapna, You are indeed an epitome of care and strength! Wonderful to read an amazing send off to your dear Mother.I can only want to give you a big Hug .You and your Husband give us an leading example of ultimate care and dignity to the loved one.May Peace be with her .love and hugs!

  7. anitha says:

    I am immensely moved by this post. My deepest condolences on your loss, and my deepest admiration for the dignity with which you and your family have handled everything. Thank you for sharing this personal journey.

  8. Supriya dutt says:

    Swapna,

    I can empathise with everything you feel. yes indeed that was a wonderful sendoff .Thanks for sharing it. A very brave and strong lady- thats you. And you have a very caring and understanding hubby.
    Take care of yourself now my friend. And keep in touch

    warm regards

    Supriya

  9. Linda says:

    I am very sorry for your loss. I admire your mother’s resolve, and your steadfast devotion to her care and wishes.

    Linda

  10. kalpana says:

    I am so elated , i feel so enriched , God Bless the work of your Hands and your beautiful heart ..I had heard about what you did from a friend in Bangalore but little did i know that I would have such a close encounter with you ont he blog ,seemed like you were sitting next to me and sharing this beautiful journey , and I am truly so proud of you,

  11. Leena says:

    Thank you for sharing. You and Bhaiya are an inspiration in more than one ways maasi.
    Love and respect, Leena

  12. Lalitha says:

    My dearest Swapna

    Just now I read the sad news of mother’s death from the Facebook. I will call you as soon as uncle wakes up.
    It is really so touching to read your blog giving me the detailed account of mother’s end and the beautiful way that you have carried her wish to donate her body organs. I have to convince Radhika to have the courage to follow your foot steps when my end comes. It is easy to convince the other children of mine to donate my body.
    Yes! Mom was a great person. Our Patna days will always be a beautiful memory. If Radhika is what she is today, the foundation stone was laid by your mom! Can I ever thank her enough for that?
    We will remember mother’s extraordinary intelligence and her scholarship and her total dissociation with the materialist world. She was like a hermit.

    Swapna I salute you for the meticulous care that you gave her during the past years. It is not easy. It is going to be very difficult for the next few days to cope with your loss. I am deeply sorry for your loss and our prayers are with you.

    • Dear Auntie,

      It is so good to hear from you, and to think of those times when we were all together in Patna. I am not in touch with too many people who knew Mom when she was active and busy doing stuff, and your comment brought back a flood of memories.

      Thank you for writing, and for your phone call last night. It was great to talk to you and Uncle.

      Warm Regards,
      Swapna

  13. Prakash says:

    Swapna and Rajesh,

    My heart felt condolences to you.

    I could “visualize” the entire process as I read your narrative.

    One tends to conjure up gory visuals around such donations and the perception around possibilities of insensitivity at the hospitals can become a deterrent for taking up this approach.

    Your experience dispels such perceptions and has inspired me (and given courage) to have conversations at home around the donation process.

    • Thanks, Prakash. Yup, in the last few days, as I have been fielding a number of queries on the concept and nitty-gritty regarding donation, I’ve realized that there are many blockers when it comes to people even thinking about any sort of body donation after death. Glad to know the post got you thinking more seriously about this possibility.

  14. My prayers.
    And a hug.

    You’re an inspiration.

  15. simran159 says:

    Very beautiful Swapna. You are the kind of daughter that every parent wants. I’m so glad all the doctors treated your mom with the tenderness and respect that she deserved. My thoughts, prayers and condolences go out to you dear. {{hugs}}

  16. Suneetha Balakrishnan says:

    Brave daughter, dutiful member of society, I am proud you are my friend, and now my guiding light for something I aim to do in future. I have been talking about body donation and no religious last rites since some time, and this is one blog I will share with my children to remind them what to do when I finish my time on this planet. Bless you Swapna, and heartfelt condolences on the loss of your remaining parent. I lost one very recently and the pain is fresh.

    • Thanks, Suneetha. I remember your recent loss, and yes, the pain stays for a while. Re body donation, I have been surprised by the number of questions I’ve been getting on that, and even the sort of questions have come as a surprise to me. I guess I’ll gather my thoughts on it and post more later, when I resume blogging…

  17. Janet says:

    You did for your mother all that she most desired! What a wonderful tribute to her life. Thank you for sharing your experiences with doctors and others during this time … people are really good at heart! Take care of yourself and your family now. Much love and a big hug.

    • Thanks for writing, Janet. It was only after posting this entry that I realized that very few people had heard first-hand experiences of body donation…And thanks for the hugs; hugs are always welcome.

  18. crazymallu says:

    “At one point, I saw a doctor adjust the sheet around her face with such tenderness and concern that I felt he had honored her in a way I can’t begin to describe.”

    Having lost a parent who suffered excruciatingly for five years, and life was generally walking in and out of hospital doors, before he got his Final Release, I can only read that with a lump in my throat and tears in my eyes. That also has to be the most moving, loving, profound thought I have ever come across in a long time. Stay blessed.

    .Biju

  19. Lakshmi Ramamurthy says:

    I too experienced something similar in my family. I cannot tell you how beautiful it is to donate one’s body. Swapna Kishore, I am so deeply moved by your sharing this and so much of your life and experiences of taking care of your mother. I am sure she is resting in peace and so so proud of you.
    love to you,
    Lakshmi

  20. Amarjeet Nayak says:

    I wish everyone had a daughter like you, Swapna. You are a wonderful daughter to a great mother. Wanted to say “my condolences”, but I think the kind of beautiful closure you have achieved for your mother just makes me wish to God to give me a daughter like you.

  21. Akanksha says:

    Swapna
    So sorry to hear about your mother.
    I was really touched reading it–I am in a train reading it and tears rolled down.
    It has been a very tough journey for both you and your mother. You are an absolute role model as a care giver.
    Will talk soon

  22. poornima says:

    Hello Swapna,
    I am immensely moved by this post. My deepest condolences on your loss,What a wonderful tribute to her life. My prayers are with you.

  23. Sumitra says:

    Swapna,

    I am a daughter of a very brave mum. As my mum struggles with kidney dialysis every alternate day and hundreds of other challenges in between, doctors say, ‘no aggressive medical treatment’ (read no more transplant surgery). Organ donation, hospital trips, google-ing, alert to tiny noises and movements are BIG part of our lives – we are three sisters. You can understand that your values, sentiments, experiences and words touches us so closely, so warmly at so many levels.
    Thank you!

    • Thanks for writing and sharing your experience, Sumitra. Oh, for the past three years, how I have dreaded the possibility that I’d have to take those tough decisions on aggressive medical treatment, because even though I did not want to do anything that traumatized my mother, how is one to know where the boundary is? And that ever-present alertness, that thud in the chest when something seems even slightly odd….ouch. My heart goes out to you and your sisters….Stay in touch. Hugs, Swapna

  24. Pervin says:

    My deepest condolences for your loss Swapna. Your post is indeed encouraging and comforting. You are truly a very strong person and I admire your dedication to your cause.

  25. Parvati Raghuram says:

    Dear Swapna
    Our heartfelt condolences at the death of aunty. We have been following your blog on and off – your care for aunty is inspirational. We remember our days in D block together with so much fondness. My mother was telling me yesterday about how aunty used to ask mum to just come and sit with her – they would both read books and enjoy each other’s company in peace. Aunty took mum to a couple of films – she told my father that my father had to manage by himself because she was taking my mother away. They were virtually the only films my mother saw in those years and she remembers it fondly. I also remember that the first time I changed a car tyre was when your mother’s car tyre went flat!. They are all small memories but such dear ones. For all of us it is the passing of an era.
    Take care and hopefully see you some time.
    We will try and call you this weekend.
    Love and hugs
    Parvati (and Raghu)

    • Parvati, actually I’ve been thinking of all of you a lot these last few days, especially as a lot of the memories I am getting of my mother now are so intertwined with the years we spent as neighbours and friends. I particularly remember sitting in your home, eating idlis your mother made (while our fathers were busy exchanging office gossip). And those afternoons when our mothers would be sitting in the sun, each reading her own book…Yes, lots of memories….

  26. Ramesh Kaipa says:

    Dear Ms. Swapna,
    I really appreciate your gesture and I do agree that it was a very befitting treatment for your mother. Let me tell you a bit about my background. I am a Speech Language Pathologist and Audiologist by profession and I really admire the work you have been involved as a dementia caregiver. As a professional, I understand the role you play in improving the quality of life in individuals with dementia and other related problems. I just wanted to discuss some information with you so that it can benefit the wider community. When I was reading about the final journey of your mother, I understand that she had an aspiration pneumonia (based on her gurgling sound). Let me explain the probable cause for this aspiration pneumonia. When we swallow something (solds/liquid), the entrance to the wind pipe is closed (due to a structure called epiglottis) to make sure the food passes only through the food pipe (oesophagus). In a clinical condition called as ‘dysphagia’, an individual will have trouble swallowing food or at times the windpipe does not close completely resulting the food to pass through the windpipe and into the lungs. So this results in aspiration pneumonia. A gurgling sound is a sign of dysphagia. Why I am saying is becasue a Speech Language Pathologist has a primary in rehabilitating people with dysphagia. However, the awareness of the role of SLP has been very less in India. So my humble request is along with such beautiful blogs you can also stress the role of professionals like Speech Language Pathologists and Audiologists who are involved in treating individuals with Communication Disorders resulting from Stoke, Dementia, Parkinson’s Disease, Hearing Loss, Learning Disability and many other such problems.

    Once again I admire your dedication to help individuals with dementia. I wish more hands would join you in such a noble casue. Thanks for the oppurtunity to read your blog.

  27. pramada says:

    hugs and love

  28. Hi Swapna,

    I think each of these acts required an amazing amount of courage and willpower and to have done each of these acts and found happiness only shows how wonderful you are !
    I pray to God that your mother rests in peace.
    Thank you for sharing this.
    My wishes to you, always.

  29. Jayanthi Sankaran says:

    Dear Swapna:

    The way in which you bravely confronted your mother’s death and brought a beautiful closure to a beautiful life is indeed awesome! I recently lost my mother to lymphoma. She also gurgled a lot prior to her death. Except, that we did not know
    that it was the ” death rattle” and a case of dysphagia. I feel guilty at how we used to get angry with her for taking an hour and a half to eat ‘Gerber’ consistency food because she could not swallow!

    Thanks for sharing about the eye, brain and body donations to give ‘life to others’. I wish we had also gone the donation away, but unfortunately my mother just stopped communicating with us. We are still trying to get closure!

    Lots of love from a fellow friend who understands!
    Jayanthi

    • Dear Jayanthi,

      Thank you so much for writing to share your own experience.

      It is such a pity that most of us really do not know how the end might come, we are not prepared for it emotionally, and we then end up taking so much time to reach peace and closure with the loss. I lost my father 14 years ago, also to aspiration pneumonia, and I suspect that was part of the reason I read up on it and was better informed about when my mother started having problems; even so, there is a lot I feel I should have known and been ready for…As for the donation, again, the only reason I managed to do it was because we had been thinking about it and preparing for it in all sorts of ways for years. My mother had been talking of her desire to donate her body for years, and continued to do so even in the early and middle stages of her dementia. She was uncommunicative for over two years before her end, but we knew what she wanted. Otherwise, it would have been a far tougher decision and also tough to coordinate….However ill that person is, however expected an “end” is, it is still a shock when it happens, and to remember and take steps for the donation instead of going the default way everyone is used to, would, I think, be particularly difficult unless one has prepared for the possibility beforehand.

      And oh, closure…It took me years to reach closure when my father died, and I suspect some things take their own time…

      Stay in touch and take care,
      Swapna

      • Jayanthi Sankaran says:

        Thanks, Swapna! Will be in touch. Like you, I too am traversing the path of journalism. I am currently doing a course in ‘Features and Freelance Writing’ from the London School of Journalism. I hope to get my Diploma by April end.

        Prior to this, I obtained a PhD in Finance from Syracuse University in New York. After which, I was an Assistant Professor of Finance at Hofstra University in New York. I then moved to Manhattan and worked for JP Morgan, Deutsche bank and Price Waterhouse. Since, I got laid off I started my own company consulting in quantitive risk research. However, due to the global crisis, it did not take off as anticipated. So, I have shifted track and moved back to India. Cheers!

      • Great to be in touch with you…

      • Jayanthi Sankaran says:

        Thanks, Swapna!

  30. Vinod Ekbote says:

    Swapna,my condolences. I bow to your courage. Your posts have been very inspiring.

    Vinod Ekbote

  31. Jayanthi Sankaran says:

    Hi Swapna:

    I thought that you might find the following article interesting. It is from the Economist dated Sept 2nd, 20102

    Brain gain

    Stimulating the brain delays, but does not prevent, dementia

    Keep at it!.

    AS THE baby-boomer generation contemplates the prospect of the Zimmer frame there has never been more interest in delaying the process of ageing. One consequence has been a dramatic rise in the popularity of brain-training games. But how effective really is a daily dose of cryptic crossword?

    Robert Wilson, a neuropsychologist at Rush University in Chicago, and his colleagues decided to find out, by following a group of people without dementia. Participants were asked to rate how frequently they engaged in cognitively stimulating activities. The researchers were looking for such things as reading newspapers, books and magazines, playing challenging games like chess, listening to the radio and watching television, and visiting museums.

    The good news, as they report in Neurology, is that frequent activity of this sort seems to slow the rate of mental decline in those without cognitive impairment. The bad news is that in those who do then develop Alzheimer’s disease it is associated with a more rapid subsequent decline.

    What seems to be happening is that cognitive stimulation helps overcome the effect of the neurodegenerative lesions associated with dementia. It does not, however, make them go away. They continue to accumulate, so that when the disease does eventually take hold there are more of them around than there otherwise would be, which results in a more rapid cognitive fall off. That is not a message of despair, though, because the length of time someone suffers from dementia is thus reduced and their healthy life prolonged. So the message is, carry on with the crosswords

    Take care
    Jayanthi

  32. Pingback: Disorientation, memories, adjustments, new realities: two weeks after my mother’s death « Swapna writes…

  33. Pingback: Three months later, musings on identity, directions, habits, possibilities « Swapna writes…

  34. Pingback: Sharing thoughts with those considering body donation: the importance of preparing « Swapna writes…

  35. jahan khan says:

    dear friend .one of my friend want to donot her body through a charity trust want she can do friend
    pls explane me

  36. Mou says:

    You are an example for many people facing these issues, I really appreciate the way you are creating awareness through your blog about dementia. May God Bless You 🙂

  37. priyankazneverland says:

    This is purely beautiful Swapna!
    I wish I could see you in person and tell you how amazing your mother was to have had such a noble thought.

    I have felt the same while experiencing my best friend’s death and it was a painful process.the religious mannerisms.

  38. Hi Swapna,

    My condolences. I am sure this article will do its bit in inspiring people to register as donors. Thank you.
    My father is terminally ill and he has pledged to donate his body post death too. I do have a question which I will send to your email address. Kindly do respond.

  39. Pingback: Personal update: A year after my mother’s death | Swapna writes...

  40. Pingback: A personal update: two years after my mother’s death | Swapna writes...

  41. mp says:

    Swapna, my condolences for your loss. It was good to find your blog. Many challenges and issues seem common but also every situation is different and I have felt that while these resources and stories provide some sense of how we are not alone it also underlines how we are. I have been searching online for the past year mainly because overtime I have started to think that this is no way for a person to live and I can’t stop feeling guilty about these thoughts. I have not yet reconciled the overwhelming love and need to ‘save’ with the desire sometimes to see it end especially when there is no hope of recovery

    • Thanks for visiting my blog and sharing your thoughts, MP. The caregiving journey requires many emotional adjustments, and my thoughts are with you as you cope with the swings in your feelings and find your way forward.

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