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Jesse Kornbluth

Jesse Kornbluth

Posted: September 13, 2010 12:12 PM

A Head Butler reader wrote to tell me about her 88-year-old mother, who was, last month, clearly failing. Her family made "the hard decision" to bring her to a hospice. There she sipped her favorite wine, listened to the Three Tenors and flirted with her husband of 65 years. Then she stopped eating, went unconscious -- and, soon, was gone.

The e-mail continued:

I have never experienced a person's body and spirit moving towards death. I am still searching for the words. To be tending to this woman I know and love so well and to not know what she was experiencing internally at this most ultimate of moments -- was she seeing people from beyond? Was she afraid? How much do you feel when the body starts shutting down? She seemed to hold on for quite a while; was it anything we said that allowed her to go? (If, indeed, we had anything to do with it at all.) Please tell me if you know of a particular book that might comfort...

Yes. I know of such a book. It is Intimate Death: How the Dying Teach Us How to Live. (To buy it from Amazon, click here. For the Kindle edition, click here.) I have read it several times since it was first published in 1987, and with each reading I have more admiration for its author. These 182 pages are loving and wise. Even more, they are thrilling -- for Marie de Hennezel, a French psychologist, spent years "accompanying" the dying on their path toward death.

I mean that literally. Her book begins: "I am at Bernard's bedside." Bernard has AIDS. (Reminder: This book was written in the mid 1980s, when AIDS was a death sentence.) He's spending his last days at the small, new "palliative care unit" where de Hennezel works. He happens to be a personal friend, but that doesn't really matter: "We have made each other a promise, and now I am here beside him, keeping a patient, emotional vigil."

That doesn't mean just sitting there. It means helping to bathe the dying man -- water is "a way of taking care that allows him to feel that his soul is alive until the very end." It means holding hands, listening -- what de Hennezel feels is appropriate to the moment and the person. And sometimes, it means acting on instinct: "We wept together, because I didn't know what else to do."

This work begins with a simple premise: "The dying person knows." And that reverses the traditional end-of-life relationship. Now the expert is the patient, not the doctor. The patient leads, the doctor follows. At most de Hennezel prods, in the hope that a patient will open up and complete the unfinished business of his/her life.

The patients are fascinating. A man, dying of AIDS, whose parents refuse to acknowledge his illness. A womanizer who discovers his goodness. A young woman who dies as if she's giving birth. And a mother, concerned only for her young son. It falls to de Hennezel to tell him she's died: "He has to know how much he helped her. She told me so. He was her joy and her support... The child listened to it all with absolute attention, then thanked me gravely. I went and had a coffee. I was shaken to the core."

Along the way, we come to know a great deal about the people who do this hard but rewarding work, and about de Hennezel, most of all. How can it be otherwise? Success here means holding nothing back. Just listen to her:

We hide death as if it were shameful and dirty. We see in it only horror, meaninglessness, useless struggle and suffering, an intolerable scandal, whereas it is our life's culmination, its crowning moment and what gives it both sense and worth.

It is nevertheless an immense mystery, a great question mark that we carry in our very marrow.

I know that I will die one day, although I don't know how, or when. There's a place deep inside me where I know this. I know I'll have to leave the people I love, unless, of course they leave me first.

This deepest, most private awareness is, paradoxically, what binds me to every other human being. It's why everyman's death touches me. It allows me to penetrate to the heart of the only true question: So what does my life mean?

Those who are privileged to accompany someone in life's final moments know that they are entering the most intimate of times. Before dying, the person will try to leave his or her essence with those who remain -- a gesture, a word, sometimes just a look to convey what really counts and what thus far has been left -- either from inability or inarticulacy -- unsaid.

Death, which we will live to the end one day, will strike our loved ones and our friends, is perhaps what pushes us not to be content with living on the surface of things and people, pushes us to enter into the heart and depth of them.

After years of accompanying people through the living of their final moments, I do not know any more about death itself, but my trust in life has only increased. I am certain that I live more intensely and more aware of those joys and sorrows that I am given to live, and also all the little, daily, automatic things -- like the simple fact of breathing or walking.

I may also have become more attentive to the people around me, aware that I will not always have them at my side, longing to explore them and to contribute as much as I can to what they are becoming and what they are called to become.

Moreover, after spending years with what are called "the dying," although they are in every way "the living" until the very end, my own sense of aliveness is more intense than ever. I owe this to those I have imagined myself to be accompanying, but who, in the humility of their suffering, have revealed themselves as masters.

Shortly after my first reading of Intimate Death, I had reason to be in Paris, so I wrote to Marie de Hennezel and asked to meet. A few weeks later, I found myself seated across a restaurant table from her. How could this attractive blonde woman in a white silk blouse and pearls have witnessed -- and shared -- those deathbed revelations? It didn't compute. She kept talking. I closed my eyes, ignoring the words, listening only for the emotion. What I heard: boundless love, compassion, faith. What I got: how much I'd like her to be holding my hand as I died. And then, after, what I really got: that her book helps me to learn to help others die and it helps others to help their loved ones move into position for their final passage. No wonder the readers of Intimate Death feel mostly... gratitude.

Cross-posted from HeadButler.com.

 
 
 
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02:51 PM on 09/14/2010
My grandmother died of lung cancer in the summer of 1972, when she was 72 and I was 15. My parents came in occasionally during the day and then stayed at night, and a neighbor came in a couple of times a day to give her morphine injections, but I had the privilege of staying with her during the day. I would straighten the house, clean quietly, and then sit in the room with her for several hours. If she woke, we would talk, and she would often joke about the unusual things she did in her sickness, such as grasping lightly and repeatedly at the fold of bedding across her chest, "When an old woman starts picking at the covers, she is about to die. That's what they always told me." Ma-ma was unafraid of her impending death, and spoke about it quite naturally. Later, I realized that she must have been in great pain, but she never revealed this to me; all was completely serene and peaceful. I had the feeling that I could simply walk with her into that mysterious place, a transition as gentle as walking into a cloud. At the end of the summer, Ma-ma went into a coma and died in the hospital. I dreamed about packing up her house, becoming aware of someone helping me, and looking up to see her: "You can still talk to me," she said. So like her.
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minerva117
This space for rent. Cheap!
10:22 AM on 09/14/2010
Part 2...When my own husband died last (2009) Labor Day weekend, it was not as expected as my residents' deaths had been. When he was taken off of life support, his sister, his mother and I all sat with him and comforted him for the 20 minutes that it took for him to die. He remained unconscious during that time, as we didn't want him to wake up only to find that his death was imminent. I guess I just wanted to share how my experience in nursing care prepared me to deal with my own loved one's death.
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minerva117
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10:21 AM on 09/14/2010
Having worked in a nursing facility for 9 years, I witnessed many deaths. The author of the book wonders if "was it anything we said that allowed her to go"? Early on in my career, I had a resident who was clearly dying. She was comatose and emaciated to the point where she looked frightening. One morning, while doing cares, I held her hand and whispered in her ear that it was OK to let go, her work here was done and her loved ones were waiting on the other side. She died within the hour. I had another resident who knew the day when she was going to die. She begged me not to let her die alone. The other nursing assistants on my wing all agreed that we would take turns sitting with her and holding her hand until the end. We each had to do extra work to make up for this, but what else could we do? We had all known her for years. I had the "end of life chat" with many more residents over the years and always felt as if I'd done a good thing.
10:17 AM on 09/14/2010
Yes, that's all very beautiful, but there is one huge thing missing from our discourse about death. How it is done in hospitals and hospice. Forced starvation. Just to words that are the truth and everyone seems to gloss over. That is how it is done in America. Only legal way. But it is brutal. Put them on morphhine and stop giving any food or water until they expire. The heavy dose of morphine makes it look easy on them, but it just makes it easy on us. I say this from close experience.
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minerva117
This space for rent. Cheap!
11:33 AM on 09/14/2010
I have to refute your comment about forced starvation. I worked in a nursing facility (see my comments above) and can tell you that many residents start refusing to eat weeks before they die. We were not allowed to forcefully feed people, as that is as inhumane as forced starvation. We would, however try to keep liquid nourishment going into the resident for as long as they would accept it. Many times it would take weeks for someone to die after they started to refuse any nourishment. Tube feeding can only be done at the request of the family and when it is done to a comatose individual, it prolongs death rather than prolonging life. As to the heavy doses of morphine afforded to the dying, I remember a time when that was not allowed and many individuals died screaming in agony and there was nothing we (the staff) could do about it. It was a relief when hospice stepped in and eased the pain of passing for so many. Far from being brutal, it allows death with at least a small degree of dignity.
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ChelleAgain
It's Chelle ... again.
08:38 AM on 09/14/2010
My mother's last months changed me in profound ways. I can never say enough about the hospice workers and the supplemental nursing service we used and how lucky we were to be able to afford to do extra things for my mother, like rent a house on a lake for the view. And right after that were the bottom-feeders entering the national debate to talk about so-called death panels when all I can think about is how good it was to know my mother's wishes and to know when it was time to go from futilely trying to extend her life to making the time she had left as comfortable as possible.
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ConnieInCleveland
One Lonely Voice trying to make a difference
07:06 AM on 09/14/2010
I was with my mother-in-law, father and mother when they died. All three were peaceful passings. I call it, 'walking them into Heaven'. Loving conversations at the time of their deaths, makes the loss much easier. I knew they were not alone and afraid when they died.
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11:30 PM on 09/13/2010
Dying alone with unfinished business is an emotional pain that no drugs can remedy.
Prepare for death at any age and when the time comes, hopefully you can go in peace.

A girl I loved commit suicide on her 28th birthday; her last words over the phone at 2am were, "I can't live another day without love".

That happened almost 50 years ago. And why do I still feel guilty?
11:19 PM on 09/13/2010
I just volunteered with my local hospice program. I look forward to learning from the people I will encounter there.
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themodernleader
10:34 PM on 09/13/2010
   From the  moment of birth death is always with us.  Death, unlike life, is an ineveitablity.  It comes no matter how we may conspire or plead or plan.  For some it happens suddenly without warning.  For others it is a slow process of withdrawal and isolation.  And we count our blessings that we live another day.  We do not fear death as long as it comes tomorrow.  If it comes today, we are stricken with regret, remorse, melancholy and fear that it should somehow be different.
09:02 PM on 09/13/2010
This looks like a great book on this most delicate subject and I intend to purchase it immediately. I wanted to share another fantastic book that I recently purchased called Sooner or Later Restoring Sanity to your End of Life Care. Its written by Damiano Iocovozzi and is extremly compassionate and would be an excellent addition to your library. It helped me so much with the passing of a loved one.
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Arithrianos
reality has already (w)on(e), surrender!
08:26 PM on 09/13/2010
gratitude should always accompany death, it tempers grief into a useful tool of remembrance, a celebration of life. i can say one of the moments i have experienced palpable unconditional love was at dovies deathbed, it was one of the most beautiful moments of my life. death and life are not-two, not-one, just as it "should" be.
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ConfuciusSay-
Aglets: their purpose is sinister.
08:06 PM on 09/13/2010
Thank you for the recommendation.
This is exactly what I need to read.
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bellestarrr#1
she done him wrong
12:43 PM on 09/13/2010
how beautiful these feelings are in a world wracked with hyprocrisy and political ineptness and abomination....we all need to devote ourselves more to these kinds of emotions than the awful engendered by the cable new cycle....god bless the ones that do gods work.
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06:28 PM on 09/13/2010
I agree, except, I think its not god's work, but the work of human beings responsible for others that walk the earth with us. We owe this to one another.
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LynneE
A not-so-elite liberal.
08:40 PM on 09/13/2010
Excellent comment. I have been an RN for 30 years and have comforted and held many hands while people passed. Never once did I have god soothe someone's pain or sponge their body. In fact, he was nowhere to be found when people cried out for mercy from their pain and suffering.