More Than Nine Things You Can Learn from Being with a Dying Person
Facing death with a loved one can be daunting. Explore how to navigate this profound experience, finding spiritual depth amidst fear and uncertainty.
For many, being with a dying person is a nightmarish experience. We live in a disposable world and modern western trends encourages us to outsource dying to others, like nurses, hospice staff and doctors. Most of us don't know what to say. We are afraid to be honest. We think that we need to bring hope and future possibility to the dying person. All while we're grappling with our own emotions of impending loss and bereavement. But being with a dying person can also be a profound spiritual moment. Let me show you how.
Thomas Budge asks the awkward questions you would like to ask, he pokes holes in rigid belief systems, and challenges the way the world taught us to think. His aim is to stimulate debate and encourage lateral thinking, so it's okay if this podcast occasionally makes you feel a little uncomfortable.
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…or perhaps, you may prefer reading it here…
I had never met Frank before but my visit seemed important to him.
It was a warm day and the afternoon sun streamed into the room, spilling onto the floor in bright puddles. Frank, a diminutive man in his late forties, stared at me from the moment I entered the room until I introduced myself to him.
"Hi Frank, you don't know who I am, so I won't blame you for being curious. My name is Thom and I'm here because one of your workmates asked me to pop in and see how you're doing."
Frank didn't say anything but started at me with motionless, watery eyes. He looked very tired and I wasn't quite sure whether he was registering my presence or not. Tiny pools had formed in his bottom eyelids where they had fallen away from the eyeballs and unspeakably sadness filled those little spaces. Occasionally when the space was too full, an involuntary tear broke loose, rolled down his gaunt, sunken cheeks and dropped from the sharp edge of his jawbone, landing and quickly soaking itself into the fabric of his tee-shirt. I drew up a chair, reached out and cupped his bony hand in mine. It was a clammy skeletal hand and beneath the skin which looked like an ill-fitting translucent parchment glove, ran a network of thick blue veins and pale sinews. There was no meat on these bones. Propped up on his pillows, he kept his haunting stare, never blinking yet never taking his eyes off me for a moment.
I asked a very stupid question but it was the only one that came to mind, "Frank, how are you feeling?"
His head wobbled at the strain of trying to engage in conversation and it took much time for him to formulate his reply. Carried on the vibration of his slow, energy-consuming exhalation, his voice tremored in a barely audible, gruff tone. I had a feeling that these were some of the last sounds this frail body would make. After spending all this effort, he uttered just one word, "tired" and I could easily see that this solitary, simple word had sapped some more of what little energy he had.
"I can see that you are very tired, Frank but what I meant to ask you is, 'What are you feeling in your heart and what's happening in your head?'"
His voice carried a note of apology and beseechingly he asked, "What did I do wrong?"
"Do you think that you have made a mistake?"
"All I ever did was love," he paused for a long time and drew breath through his parched, bluish lips, "I think I loved too much."
"Do you have regrets?"
"Lots!"
I wasn't in a hurry and still resting his hand in mine, I began to caress his thin arm, feeling the dark purple welts slide beneath my fingers as I followed the bony contours of his forearm. This body was near its end. My touch was consoling and his sad eyes rolled sideways as he sighed with gratitude.
"Uhh!"
I imagined that the nursing staff touched him only with gloved hands and only in carrying out their duties. I had no idea when someone last touched him affectionately and I could see that he felt comforted by it. Remorse welled up within me as the realisation dawned that we've lost the magic of reassuring touch. We've lost touch — quite literally. It is as if lust and fear got in touch's way. Of course, we must be wary of inappropriate, seductive clutches and gropes that makes one's hair crawl but the fear of litigation on charges of harassment and in compliance with the rules of political-correctness, we now live in a predominantly handsfree world. Unless it is between parents and their children or in the confined spaces of intimate partnerships, touch is now a huge taboo in our modern world. I grew up in a tactile void and was once very afraid to express my feelings kinaesthetically. Sadder still is that we have lost touch's powerful communication, comforting and therapeutic value. Think of the benefits of Reiki that has been a major form of alternative medicine since Japanese Buddhist Mikao Usui developed it in 1922. Think too of Jesus' laying on of hands and the miraculous changes that that simple act brought to some of his followers. We'll readily stroke a cat's back or pat a friendly dog's head but we dare not do that to our acquaintances for fear of reprisal.
I only knew of Frank from one of his work colleagues who described him as loveable, funny, very generous and full or life. Yet, here he'd been alone in Hospice for days, dying.
"What are some of those regrets, Frank?"
Ever so slowly he told me how he'd saved enough money to go on his dream holiday but that his dreams now seem impossible. Another tear ran down his cheek, dropped onto his cotton shirt and soaked into the fabric. His stare was haunting in so many ways. I only noticed the tiredness at first but I subsequently found depth in his penetrating look. There was no questioning why I was there or who I was. That didn't seem to matter to him at all. Our meeting place was somewhere outside the usual social frame that governs our interactions with one another. Frank seemed to meet me with egoless, serene presence manifesting itself despite his broken body and confused mind. I was looking deeper into those dying eyes and I remember thinking, "Who are you?" Way beyond his crumped frame and bewilderment lay another presence. It mesmerised and captivated me as if I was in the presence of an amazing being of wisdom and love. It was altogether otherworldly.
"Where did you plan to travel, Frank?"
"The Rhine River — fairy tale castles — lush mountains — a cruise down the river — to Amsterdam."
It's regrettable that we make our future plans, often with passion and gusto, only to have them thwarted and having to watch them crash to the ground.
There is an urban legend of a holy man who shared a hospital ward with a very rich man. It's an improbable story I know but I love telling it nonetheless. Both men were dying. The rich man had all the gizmos and gadgets medical science could attach to him. Private doctors stood at this man's bedside to give him whatever service they could. They infused copious amounts of life-supporting medicines into his veins. The man's lawyer and accountant were there too, taking last minute notes. "Do whatever you must to save me and spare no cost," he ordered.
As the hours ticked by, the holy man lay alone in the bed on the other side of the curtain and was unperturbed by the commotion happening beside him. He had slipped into deep meditation and slowly reviewed his pious yet simple life. A smile beamed across his face and gratitude filled his heart. He prepared his mind to surrender his last material possession — his body. He drew in a deep breath and sighed out a slow, constant stream of air and with it, he left his body and was gone.
The rich man was very anxious. "Why aren't you blokes doing something worthwhile? I'm worried because you lot appear not to be doing enough to keep me alive. I have so much more to do. There are all those unsigned business deals to complete and I must rearrange my investments to take advantage of the new economic climate. I can't afford to waste my time here. Do something guys and do it now." Then, suddenly, he felt remarkably well and all the pain had left. He felt alive and, shouting with joy, he called out to his team, "Well done guys. Whatever you have just done worked perfectly. I feel much, much better. It's what I expected you to do a long time ago. Quickly, give me another shot of it before the effect wears off." Nobody answered him. He looked at each one of them in turn and noticed that they all shook their heads in disbelief. He could sense their mood of hopeless failure. "Guys!" He called out again, "What's the matter? Talk to me — for Heaven's sake, will somebody talk to me." He watched them switch off the machines and from his new perspective, looking down from the ceiling, he saw them draw the sheet over his head and watched them silently leave room. "No!" he cried out, "Not now! Come back, somebody please come back and save me…"
Dying isn't the same experience for every one of us.
Swiss psychiatrist, Dr Elisabeth Kubler Ross pioneered the five stages of dying in her ground-breaking book, "On Death and Dying." These are the five stages she documented: The first reaction is denial. In this stage dying individuals believe that their diagnosis is somehow flawed. They cling to a false, preferred reality that all will end well. The next stage is one of anger. This occurs when the individual recognises the evidence of impending death and that denial cannot continue. They become frustrated, especially with individuals close to them. Typical psychological responses of a person undergoing this phase would be: "Why me? It's not fair!" Or: "Why is God punishing me so badly?"; "How can this be happening to me?"; "Who is to blame?"; and, "Why would this happen?" The third stage is one of bargaining. It involves the hope that the individual can avoid a cause of grief, usually as a negotiation for an extended life made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise. For instance: "I'd give anything to live a bit longer." Or: "If I'm spared for a while more, I promise to be a better person!" When the individual realises that bargaining is futile, they move into stage, depression. They begin to say things like, "I'm so sad, why bother with anything?" Or: "I'm going to die soon, so what's the point of trying?"; "I will miss my loved ones so why should I go on pretending?" During this stage, the individual despairs at the recognition of their mortality. In this state, the person may become silent, refuse visitors and spend much of the time mournful and sullen. The dying person finally moves to stage five, acceptance. They begin to say, "It's going to be okay." Or: "I can't fight it; I may as well prepare for it." In this last stage, individuals embrace mortality as their inevitable future. This typically comes with a calm, retrospective view and stable emotions.
"Are there other regrets too, Frank?"
"I want to see my sister."
"Does she know that you are here?"
"She knows but she won't come and see me. She stopped talking to me many years ago when I told her I am gay. She's the only one I have left. Mom and dad died a long time ago. It's just us…"
"Would you like me to call her?"
"The nurses tried already but she won't come."
"What do you need to say to her or what do you want to hear from her?"
His voice became very tearful and he spoke as if he couldn't breathe, "That she loves me and that I love her."
"Well, Frank, if she won't come and see you, then you and I can pay her a visit to chat things over. Would that work for you?"
"Oh yes!"
I slid my hand down his bony spine and tilted his body forward. He was propped there like a rag doll. After I repositioned his pillows I lifted him up, one hand at the back of his knees and the other supporting his shoulders and glided him into a recumbent posture. His frail body seemed so light and so powerless.
"Take a moment, Frankie, close your eyes and imagine that you are taking me to the safest place you know. There, where we shall meet your sister. I'll be right here by your side all the way." I lifted his arms and placed his cold hands on his belly, one on top of the other, and held them there gently as I slowly spoke him into a hypnotic trance. It didn't take long and he went in very deeply.
Trance depth is sometimes measured on a scale of one to five, one being a very light trance, a bit like daydreaming; and level five is as deep as one can go. Trance-depth five, is erroneously called somnambulism but actually, this word refers to motor movements performed while asleep and has nothing to do with hypnosis at all. Sleepwalking is a good example of somnambulism. This deep, euphoric hypnotic state is better named after James Esdaile. He was the first person to utilised 'hypnotic coma' or what was later termed the Esdaile State. He perfected it to perform surgery in India before the days of chemical anaesthetics. In trance depth five, the subject's subconscious mind easily confuses reality and hallucination and the boundaries between them smudge, leaving subjects ready to accept their fantasies as if they were real.
Inducing trance depth five in Frank was easy and the deeper he slipped into trance the more alive his voice became.
"Go to your safe place and when you are there, tell me where you are."
"I'm… I'm in my bedroom."
"Which bedroom is this, Frankie?"
"My bedroom at home."
"Describe your room to me."
"It's quite big. The walls are a Wedgewood blue. The cupboard doors are white. There are heavy curtains. They're tied back and the sun is streaming through the window."
"Where about are you in your room right now?"
It's an important technique used by hypnotherapists to enhance the realness of the hallucination. Notice how I asked Frank about the room as if we were in his real room. I did not say, "Describe your room back home," I spoke to him as if I was standing, blindfolded in his actual room. Notice how all my communication with Frank occurred in the present tense, as if we were there.
"I'm sitting on my chair looking at my bed. It's so clean and neat."
"Thanks for sharing this with me, Frank. You need to be my eyes and ears so that I can properly be here with you."
This is a neat hypnotic suggestion that encourages him to speak and it saves me from having to repeatedly ask him for details.
"How long have you lived here?"
"About fifteen years or so."
"In a moment, I shall go and fetch your sister and bring her here into your safe room. Would that be okay?"
It's important to get the subject's permission to do things because, if they had issues with the things you were suggesting, it would not only cause anxiety but it could snap them right out of trance.
"I'm nervous to see her but, yes, I want to see her."
"What's your sister's name?"
"Sarah."
"When I bring Sarah in, where would you want her to sit? Or, would you prefer that we keep her standing?"
"I will sit on the ottoman over there and she can sit here in my chair."
Just by the way Frank described where his sister would sit, I knew that he was fully in the hallucination and well in the Esdaile State. Here, he was no longer able to distinguish between reality and fantasy.
"Perfect, let me pop out now and fetch her. Why not move across to the ottoman while I'm out?"
I paused for a while and monitored his emotional reactions. I could feel his hands and arms tense and I noticed how his breathing changed as he prepared himself to meet his sister.
"Hello Frankie, here's Sarah. Sarah, would you mind sitting over there in that chair?"
I leaned forward and whispered softly in his ear, "Frankie, I'm right here beside you and I'll help you through this experience. Sarah can't hear what I say to you and she'll quickly forget that I'm here at all. What's the first thing you need to say to Sarah?"
"Why?"
"That's a good question, Frankie. So, put it to her now."
"Why, my sis? Why?"
"Remembering that you need to be my eyes and ears, tell me how she replies?"
"She says, 'You know that what you've been doing is wrong in God's eyes. I can't be part of it. God won't let me.'"
"Frankie, how do you feel about what she's just told you?"
"I'm not a bad person. I've never been a bad person. I tried my whole life to be good."
"Sarah is allowed to have her opinions and they form the basis of her reality. You are also allowed to have your beliefs which form the basis of your reality. Neither of you are wrong. Both of you are right — from your own perspectives of course. What would happen, if you said to Sarah, that you forgive her?"
"But she was the one who rejected me — I never rejected her."
"That's true Frankie, but it is now you who holds the power to change this impasse before it is too late. She can't change it Frankie, only you can. Tell her that you have always loved her and that you forgive her for having been so staunch in her beliefs. The time is perfect right now, Frankie."
"I love you Sarah. You will always be my sister. I forgive you." He began to sob and his chest heaved under the cathartic release of all the past wrongs. I waited quietly, reassuring him of my constant presence by gently squeezing his hand as I held them on his belly.
"Well done, Frankie."
Reassurance that he did the right thing helps him to consolidate his experience in a positive way.
"What does Sarah do or say?"
"She's crying too."
"Get up, Frankie, walk over to her and give her a big hug. Can you do that?"
He just sobbed some more and I let him purge his emotions.
"Well done, Frankie, well done my friend. Notice how relieved you now are."
I didn't mention Sarah again because it wasn't appropriate in this context. We as facilitators, sometimes hold onto the logic of the storyline but the subject's subconscious mind may be far away, integrating what has just occurred in its own way.
I notice how Frank's complexion changed as pink hues nudged away those deathly shades of pasty grey. His body had mustered a wave of life even as he lay there motionless, breathing ever so gently.
I whispered in Frank's ear again and proposed, "While you are here in your room, why not reach over there, grab your suitcase and your passport, pack up some of your finest clothes and let's go and have some fun sailing down the Rhine. We will visit all those fairy tale castles together. We will experience all of Germany's history and culture. Let's do it now?"
"It's so exciting!" he exclaimed with boyish joyfulness, "Can we visit that castle over there on the hill. I just love the mystery of castles. Do you see the castle?"
"Oh yes, Frankie, I see it. Let's go and visit it right away. What a beautiful holiday to finally turn your lifelong dream into this reality. We've got many days to sail down the Rhine together, all the way to Rotterdam and then we'll take the train up to Amsterdam."
I didn't say anything more but just stayed there with my hand over his. In the silence, my mind hopped from idea to idea. I looked at him, his body ravished with HIV and dying from AIDS, and I pondered the irony of this whole situation. Is Frank's outcome just nature playing with itself, as scientists propose? Is there sin in any of this? I marvelled at how us humans have no life of our own because life belongs to each cell that makes up our bodies. Trillions of cells arrange and coordinate themselves to form a colony, each cell having its own speciality with which it provides a communal service to all of them. I don't think that any one cell has an inkling of what the other cells are doing around it even though it relies heavily on their cooperation for it to stay alive. The coordinating forces that keeps the perfect balance of life are indeed mind-blowing. We are mobile cell metropolises, hugely complex bags of collective, yet individual, specks of life. My mind immediately thought of a gigantic ant colony and the way it functioned. There are around seven billion of us humans moving about on earth, each one of us is a cellular colony of its own. While the conditions and parameters needed to keep homeostasis are so narrow, there is conversely, such diversity of human expression. Together, we are able to achieve so much. Frank's sad experience with his family is heart-breaking. Yet, as you begin to look at the situation differently, you begin to see that our suffering is only a contrivance of mind. None of Frank's cells did anything wrong. Collectively, they achieved what they were meant to achieve to maintain life and health. A colony of cells expresses life in its own unique and ubiquitous way. Outside nature's settings, lies an intricate web of societal rules, none of which are found in nature itself. They are only found inside our minds. Judgement is one of our mental Achilles Heals. If we could prune but one thing from our minds to give us a better chance of living harmoniously together and with all else, I would suggest that we cut out all forms of judgement. Judgement is at the heart of intolerance, hatred, racism, sexism, class distinction. It gives rise to preferences, narrow-mindedness, anger, fear, jealousy, egotism. I tried for a moment to set any judgement that I might have held about Frank. Here he lay, now still and restful, just another fellow being. It was not my place to judge anything. The collective cellular force of life had carved out Frank's unique experiences, as it had done with mine. This dying being had had the same capacity for love, joy, sadness and fear that I do. Fundamentally, we're were no different. The only things that differentiated us were our thoughts, beliefs and experiences in life. Other than that, we were the same.
Frank took a shallow gasp of air, as though he'd swallowed some saliva, and died. I have sat with many dying people before and I marvel at their last moments. Some have a strong tenacity for life and struggle and fight death to the very end; others, like Frank, come into a state of serenity and peace and transition gently.
The air element of life had gone. There was no more breath in this body. Perhaps some awareness, that once called itself by the name of Frank, was out there in the room observing what happened. Perhaps that entity was met by his earthly mother and father who had passed before, now soulmates in a different realm. I imagined that there, higher up the mountain, they could see much further than we can in our material forms and that they could comprehend the futility of having once judged their son so harshly. There, perhaps, they met each other afresh and danced and laughed. I sat with Frank's body for another twenty minutes or so and watched the second element slowly leave his body, fire. His lips and fingernails turned blue and what little warmth there was in his bony hands quickly seeped out. In time, the water element would also leave and then, in time, so would the earth element and then, there'd be no trace of Frank other than in someone else's memory and in the space from whence he came. The spirit that once animated Frank's body was at last now free from the shackles of its fleshly prison. Thus purified, it had left. What remained in the minds of all who knew Frank would be their private effigy of him, distorted only by their private judgements of him.