My Father’s Breath

What follows is my experience, and the continuation of my previous blog post The Last Dance.

A week ago, dad finally died.

Everything that had ever made him Barry, his obstinacy, his humour, his passionate love of home, family, animals and his garden – my father – is gone now. His dying, however, was an indescribable struggle. For everyone, sure, but mostly for those of us that love him. For us it was a minute-to-minute mix of anguish and hope, despite what we knew. A son wants to keep a good father with him, some of you understand, some maybe can’t, or don’t. Me? I was utterly emotionally invested.

But. There’s this heartbreaking but, regarding how he dies, not why.

Who are you?

The nurses and doctors were, through necessity I guess, distant from his Barry-ness. He was merely another patient. They are pushed to some limit we are not told of. But now, the only solace I have in this whole indescribably sad and distressing experience is that my father, by dying, gave me several gifts and insights. Aside from the fire he lit under my ass in relation to everything around death, he gave me wisdom. What I didn’t know before, I now do. I have the ability to comprehend a situation I would never have thought possible, never really ever thought about at all, and for that I am more able to love.

Know when to hold ’em

This time last week I was lying next to my dad in a palliative care ward, watching the cowboy movie he loved so much, pretending he was seeing it with me while, second by second, registering his hoarse, harsh breaths, initially getting faster and then increasingly and inexorably shallow. I observed, held and tended to his almost lifeless body for days. Waited for it to stop. That relentless rise and fall of his chest. I was tired, exhausted, and I know he was too. His struggle to be alive – someone who had a life worth living – was still here. Was he aware of what had been done to him? This maintenance of a dying man, breathing but not alive; the brutal, unnecessary medicating of his body and, from what I could tell, the confusion and terrifying hallucinations wreaking havoc on his identity. The toxins, the treatment, the cancer and the whole experience (that is akin to animal abuse) took an indelible toll on all of us who love him. I didn’t make it until the end of the movie before I fell asleep.

 

Signs

Every night I stayed with him. Sleeping with one eye open, aware of my surroundings, the smells and sounds from the other rooms, the severity of the situation. Acutely aware every time the nurses came in to check the drugs that were to keep him “comfortable” (I won’t go into that here). So, around midnight or just after, when one of the nurses came on her rounds, on this final night, I greeted her and asked how, in her opinion, my dad was doing. She said to keep an eye on him as his breath had seemed to have changed again (he had been breathing strangely for days by this stage). This is one of the several signs that death is close.

The other pending signs I was warned of are:

• loss of appetite (he had that one covered for weeks)
• increased sleep (he had barely opened his eyes or moved for over a week)
• drop in body temperature (I was continually touching him to check if he was getting cold but, strangely, if anything he was hotter than usual)
• discolouration of the skin around the hands and feet (nope)

Was this it? Was tonight going to be the night? The thought of it raised my anxiety levels while it also scared the shit out of me. I had never been through this experience before. I felt completely alone.

I had had many ‘false alarms’ through this slow dying process. Many moments of is he dying now? Will he make it through the night? Is his skin changing colour? Will all this suffering be over soon? Like prayer, I suppose. Again, and again. Watching him barely breathe; the struggle of it all. Knowing his body was shutting down, bit by bit, over and over; this endless grief, tormenting all of us, living, who were close to him.

But then I knew, and felt, the moment. I was as prepared as I could ever be. I had picked a gardenia from his garden before I’d come to the hospital. I’d brought a sheet from the linen cupboard at home. I brought gold coins for his finally-closed eyes and oil for his body. I had his favourite clothes (I insisted my mother chose them) so I could dress him with respect. I had done the research for weeks. My dear friend and incredible wise woman Lore de Angeles told me about a Japanese movie called Departures, where the main character learns about, and carries out, the rituals of respectful preparation, for the dead person’s final rest.

There was no other choice. I was always going to do it. I watched videos, on how to wash and wrap a dead body, from various cultures. It was my honour, and a tribute.

Anyway, I sat by him, held his hand. I turned up the playlist I had created for him just a little; the one I had listened to with him on almost every visit for over seven weeks. I asked the spirits of other dead—hoping the stories I’d been led to believe were all real—asked whoever loved him, his brothers, mothers, fathers or friends, to please come and get him now. Because this suffering is plain wrong. To take him somewhere beautiful.

 

The last breath

I pleaded with the air, with whatever spirit was listening, please take him now. And I meant it, this begging for some mystical kindness, with every cell in my very alive body. The lights flickered (like they did the week before when I thought he was going) and I knew. I skipped the playlist to his favourite song, as I thought he might like that if he could sense, feel or hear anything at all. I got through the track and decided to play it again. Then I played it again. He took his last breath, and I knew. This is it.

I watched in awe, heartache and a with a strange sense of calm. Was it finally over? I don’t know even if I blinked or breathed, and the moment was eternal (I had to remind myself in my daze to look at my phone to acknowledge the hour, 1.11 a.m., in case the doctor, when he finally came, needed to know). Then, in what felt like a mere couple of minutes, dad exhaled, like a sigh of relief. The air left him, and his entire body relaxed. Went into complete stillness. Surreal but oh so real. I sat in the silence, kissed his hand, his forehead and placed my own hands over his heart.

Eventually I buzzed the nurse. She came in and I said, He’s gone.

She gave me a while with him, alone, before she bought the washcloths and fresh water. I insisted I bathe him myself. She took out all the tubes and needles. I lit a candle. I was ready. Calm in the face of this unnecessarily ravaged man, braced to do what I had never considered doing before, trusting in the love in my own heart, I prepared him like royalty. I don’t know how I got through it, but I did. And I have. I changed the music to a song I like to play when I teach yoga, a song that takes me on a journey deep into my own being, and it helped me. Just maybe, I remember thinking, just maybe he is watching me. Knows.

 

A good death?

I did my best to return the dignity that was taken from him through this whole, useless, drawn-out, pointless and dehumanising ordeal.

I wished, in this grief, that he’d had a good death.

The doctors, the nurses and everyone’s opinions had wounded him enough on this journey, invaded his space and body. Now it was just me and him. I was ready. I washed him like I would my two year old son. With tenderness and care, familiarity, because he is the flesh of my blood. I asked the nurse to help me dress him while I wrapped his still-warm, limp body in my arms. His pale face was drawn and gaunt from the starvation, the effect of the whole experience that had so dreadfully slowly drained the life from him. Taken his Barry-ness. Belittled him though some perverse need to keep alive a human being who was beyond that.

The beauty of the person he had been gave me the strength to do him honour. I insisted on wrapping him in the sheet from home, I didn’t want them just to chuck his corpse in a body bag, although I know now that he is, now, just meat. Flesh and bone, the vitality that had embraced Barry for seventy seven years is somewhere. All was done with what tenderness, and grace, I could muster.

(The only other times I had seen dead bodies were on my trips to India, particularly the ghats of Varanasi. Ghats are a series of steps that lead down to a body of water where they bathe and cremate the bodies. This ancient city in Northern India on the banks of the River Ganges is home to many of these ghats. You can watch as they take the wrapped bodies to the river, wash them then prepare them for burning. They leave the bones often slowly burning and you can walk amongst the bones, the smell of smoke intoxicating, with the cows wandering by your side. It is very interesting.)

Somewhere in all this, a doctor came in. To ascertain the legitimacy of death and to record the whatever, and the time. He asked me if I had any questions. Ummm, fucked if I know…, was all I had in me. Then he placed the head of his stethoscope on my father’s chest.

What can you hear? I asked. It just came out. I don’t know why. He said he could hear the blood settling in my father’s body. Interesting I suppose. What happens next? They fill out the paperwork and I get back to do what I was doing.

 

Coins for the Ferryman

I placed the coins on his eyes, asked if I could open the door to let his spirit greet the sky but was, again or rather, finally, denied. Because the doors were alarmed. Then I asked if the nurse could wrap his face. The last thing to do. It was over.

I grabbed my motorbike jacket and bag and told them I had to go. It was 3.30 in the small hours of early day. On my way out the nurse told me that several of them would carry my dad’s body to the hospital morgue as a sign of respect. I thanked them, meant it with every part of me, got on my bike, then found a 24 hour petrol station to fill my tank. It was as empty as I felt. Somehow I managed to pay, get back on my bike and get on the highway to my parents’ house. Riding the almost deserted streets I sobbed and sobbed. What had I just been through? The adrenaline had left me.

I rode to the home that he’d worked so hard for. The one I grew up in. His motorhome still in the driveway where he’d left it, ready for the next adventure that he never got to have with my mum. I got off my bike and broke down again. I could barely stand with the weight of these last seven weeks.

I had tried so hard to be heard, I had seen the warning signs and no-one would listen. It was like a twisted dream. I looked up at the stars, gathered my strength, climbed the stairs and into dad’s bedroom. I took off my gear and mum walked down the hall in a daze. I’m so sorry this happened to him. He didn’t deserve this. I hugged her, did my best to keep it together then went to bed. It was done.

Now what?

 

The death industry

The death industry is huge. It makes a lot of money. Is big business. Sort of secret business. The U.S. funeral market is currently estimated to be worth around $20 billion annually, and in Australia, 5 years ago, profits were around $1.1 billion and growing fast. Generally speaking, the average cost of a coffin or casket will be between $1,000 and $4,000, however some coffins or caskets may be more than $15,000. Crazy. Then the average cost of cremation in Australia is approximately $3,600, whereas the average cost of a burial is approximately $4,500 (excluding the funeral coffin prices). Then there is a service or whatever and all the other stuff to organise. (Have you done your will yet?)

Friends and I have been discussing burial options. It’s a big continuing conversation. Apparently, in the near future there are ideas of having a body snap frozen in liquid nitrogen and smashed into little pieces. Interestingly odd. Why can’t we just take a body, put it in the ground and let nature run its course? Traditional burials will entomb me at around 1.5 metres deep, and often in poison-treated timber (often chipboard done up all shiny, like real wood) or metal caskets, lined with plastic. The caskets take a long time to break down, the lack of oxygen means decomposition slowly produces the gas methane. Then there is the embalming issue, though less common in Australia than places like the United States, embalming fluid (including formaldehyde) will leach into the soil once the casket is breached. Poisoning the earth for what reason? Then there are “green burials” where I’m placed in a biodegradable wicker basket, or a cardboard box, or shroud, and although laws vary by state, bury me around a metre deep. A phone call to the Bushland Cemetery (Lismore) info line quoted over $4,000 for a hole in the ground. For more info on green burials click here.

Cremated remains are referred to as ‘ashes’. However, technically there are no ashes, what is left are the fragile calcified bits of bone fragments. After the cremation, a special processor grinds (kind of like coffee beans being ground I suppose) the fragments to a fine granule-type consistency into what is called “cremains”. So that is next for what is left of Barry.

 

Finality

My dad didn’t want a funeral. He didn’t want sermons, sad faces or sad songs. His life, that he loved so much, deserves celebration, so that’s what we plan to do. I’ve created a slideshow of his life through images and some quotes. I started preparing it weeks ago when I was by his side.

The next day my son came to stay with me at my parents place and that helped remind me of laughter and love. I tended the garden and lawns like my dad loved to do and had the urge to go through his clothes and keep some. Better than throwing them out, I suppose.

Still determined to change the legislation for Voluntary Assisted dying in NSW and the rest of the country that is yet to do it, I am now in contact with Andrew Denton (as per the recommendation of Lore and my mum) and he made me aware of the charity he set up Go Gentle. And as he aptly put it, “in some ways, this is the last fight from the Dark Ages”.

Religious faith is divisive, dangerous and in a world polarised by religion, why should someone’s religious beliefs (belief without evidence) or ‘faith’ have anything to do with giving my dad an honourable and painless death? A way for him to keep his dignity and go in a manner of his own choosing. I cannot watch another person I love go through this torment. The official position of Christianity is strict: the killing of a human being, even by an act of omission to eliminate suffering, violates “divine law” and offends the dignity of the human person (this, coming from a book that says “…you must kill him, your hand must strike the first blow in putting him to death and the hands of the rest of the people following. You must stone him to death, since he has tried to divert you from Yahweh your God…” Deuteronomy, Chapter 13). Delusional and a completely backward belief system. Coming from the myth of a semi naked man nailed up to a cross. Religious extremism in all its forms must get out of our politics and leave us to decide for ourselves. Enough is enough. For other religious beliefs on Voluntary assisted dying click here.

We need better end-of-life choices across Australia and the world. It will come before our Parliament again in September. Sign the petition here.

This whole process has changed me. I am not who I was before this. I don’t know how it will affect how I teach yoga and walk through my life, but I know it will.

And I beg you all, and those who hold the pens… Go Gentle.

I acknowledge and thank Lore de Angeles for her love, support and friendship through this whole experience and for helping edit my blog. Without her I would be lost.