As I walked back towards Dad’s room, I felt a tightness in my stomach. Hard truths always hurt, and I wasn’t able to make the sensation dissipate before I entered Dad’s room.
Dad was reading something so I walked towards the window and tried to gather my thoughts.
“So, where did you go?” enquired Dad, looking up from his paper.
“Oh, I just went to have a chat with the nurses about your medication. All good,” I replied.
I lied. I didn’t want to have ‘that’ conversation.
So much of this was uncharted territory for me, and the thought of having a face-to-face conversation with my father about the end of his life was something that was out of my comfort zone for now.
I let Dad continue with his reading as I stood silently looking out into nothing. The fact that the sun was shining and it appeared to be another beautiful day outside all eluded me. I was wrapped up in my little world; a world I struggled with more and more. Yet, I knew I was here to learn the lessons that were being sent my way.
As I stared out of the window, my mind flickered back to a few months before when I rode a bicycle up a magnificent mountain road in Switzerland. How utterly free and amazing I felt at the moment. That was a journey that had changed me for so many reasons.
I never dreamt about being in my current predicament with all these feelings, emotions and internal struggle. I realised that to be completely free inside, I needed to face my demons; demons in the form of my lack of connection with my family. And now the universe had staged a catastrophic event that finally brought us back together.
I thought of the man that lay in the bed near me and how he felt about having me around. It was as unusual for him as it was for me. Our lack of emotional connection made it harder for us both, no doubt. I tried not to lay blame on him for that, but I continued to struggle with the very thought that he might die and it would remain like this until the end.
The day proceeded like any other. Mum visited Dad every other day, or when she felt necessary. When she was around, I made myself scarce, preferring to be in the garden under the trees, finding solitude and peace. If I were to linger in the room, the energy would just be tense, which wasn’t healthy for any of us, let alone the man who was incredibly ill. At times, I felt tears welling up in my eyes as the whole struggle became too much to bear.
I often questioned if I had indeed made the right decision to return to Australia, putting myself and others in this predicament. After all, I made that decision without hesitation, doing what any son should do.
But what kind of son am I?
A long distant son who doesn’t feel connected to his own family. A son who, for the majority of his life, has lived in ignorance of his family’s plight. Their ups and downs were as foreign to me as my world had been to them.
Gilbert K. Chesterton wrote, “The family is the test of freedom; because the family is the only thing that the free man makes for himself and by himself.”
I got the ‘free man’ part, but little else.
I knew the coming days were going to be tough, and I knew there would be some tough decisions to be made. Things were likely to go downhill rather quickly. It had been obvious to me that the doctor had expressed, in a few words, that Dad’s predicament was not good.
Everyone was running out of options, including my father.
Once Mum would leave, it would be the time for another cricket match again. Dad and I settled in; Dad jacked up in his bed, while I lay on my newly beloved piece of furniture.
As the match aired, I noticed that Dad had become paler and was struggling to stay awake. No matter how defiant he was trying to be on the outside, something on the inside was not giving him any peace. I let him drift in and out of sleep. I ended up turning the cricket game off midway as soon as I heard him snore.
I tried to sleep too, but I couldn’t. I knew tomorrow would require us to decide about dialysis. This was going to be another major step for everyone. I stayed awake until Rosie the nurse appeared around midnight to take Dad’s blood pressure and temperature. As they say, if you want to rest and heal, don’t stay in hospitals. One’s ability to get an interrupted night’s sleep is almost impossible.
But, yes, I know, the nurses are only doing their jobs.
I must’ve drifted into sleep sometime after nurse Rosie left. I awoke suddenly to the sound of a janitor’s cleaning machine going off in dad’s bathroom. I don’t know exactly how long I had been asleep but it wasn’t long.
Dad was awake and looked over when he saw me stir.
“How did you sleep?” he asked.
“Not too bad,” I lied again.
Because who wants to make the sick feel bad about you being in discomfort? What was my misery compared to his?
“How did you sleep?” I asked back.
Clearly, I wasn’t the only one lying.
It was understandable, I suppose. We were both trying to make each other feel less bad.
Isn’t it funny how we can try to justify little white half-truths when we feel it’s okay to do so?
Breakfast came and went - nothing at all to rave about. Hospital food around the world is notoriously bad, and in this particular Australian hospital, things were no different.
Shortly after breakfast, a lady appeared at the door. Dad and I were chatting about something. I looked up to see her hesitate to enter but smiled to let her know that it was alright to come on in. She introduced herself as Christine.
Christine was here to talk to Dad about the dialysis options. She came with a bundle of papers, a ring binder folder, and a name tag on her lapel. All was in order; this was official.
Dad wasn’t impressed.
I could see this was going to be a difficult time for Dad as well as for Christine. While Dad was very respectful to doctors, he wasn’t so tolerant of other hospital staff as he believed they weren’t the ones that could get him home again.
Christine spent a good half hour explaining the various dialysis options. They consisted of in-hospital treatments or mobile units at home. Christine explained the entire process of what happens when one’s kidneys decide it’s time to give up working, and what artificial ways could be used to rectifying that issue.
Dad’s age and heart condition meant he would not be considered for a kidney transplant should things get to the stage of complete kidney failure. What I didn’t realise at the time was how close we were to that being our new reality.
As Christine ended of her wonderfully orchestrated presentation, one she had obviously given many times over, I decided to throw her a couple of fun questions in an attempt to lighten the mood in the room.
“Christine,” I started. “What are your thoughts around Dad having the odd meal of fatty fish and chips and a few beers?”
Dad instantly came to life. A smile the size of the room shone brightly across his face.
I wasn’t sure if it was because Dad enjoyed seeing his son rip sarcastic comments and bait strangers who were trying to be very professional.
“Well,” Christine cleared her throat. “I guess there is nothing wrong if your father has that as a treat now and then.”
Christine wasn’t aware of the little secret that Dad and I had - that he had already consumed fish and chips and a few beers twice in the past four days.
Dad decided to play along. He looked at me seriously and added, “Well, that’s good news, isn’t it? We must plan that sometime.”
“I could ask the kitchen to prepare some grilled fish if you would like,” Christine suggested.
Our moment of glory was short-lived.
“Oh yuk, no thanks! Beer batter is the only way to have fish in my world,” Dad exclaimed.
Christine figured out she was outnumbered. She decided to bring the conversation back to the more pressing decisions.
“Barrie, would you be open to starting dialysis as and when it’s going to be required?” she asked.
“No,” he said without skipping a beat. “I don’t want to be hooked up to any bloody machine!”
Dad’s directness and frankness surprised even me.
Christine's facial expression changed immediately. She knew, as I did, what Dad was saying.
He didn’t want to prolong his life by way of artificial intervention.
We had just crossed another line, and Dad had taken that step by himself. Now the game was going to get very real as if it hadn’t been already.
Christine shifted in her seat. She closed up her very well organised ring binder. She stood up and placed some brochures on Dad’s bedside table, which I knew would be in the rubbish bin within five minutes of Christine leaving.
“I will let Doctor A know that I have been here to see you and inform him of the outcome of our conversation. Good day,” she said.
“Yes, please do so, and same to you,” Dad replied.
Christine bolted out of the door without the hesitance she had when she came in. Usain Bolt would be proud.
“So what do you think?” Dad asked without looking my way.
“About what?” I awkwardly replied.
“About this whole dialysis thing!”
“Well, as I have said all along, I think you need to do whatever you want to do as long you are comfortable and at peace with your decisions. I think that’s the way it should be.”
Dad nodded as if he was seeing right through me again. Another lie.
The moments after Christine's departure weren’t pleasant. Mum came to visit again and the whole conversation went back to Dad’s decision about dialysis.
I watched in interest as I saw husband and wife communicate in their own way. It made me realise many things about the relationship that my mother and father actually had.
I felt sorry for Dad over many years. Mum has a very strong character, stemming from the upbringing with the authoritarian father she had, as well as the fact that she was one of six sisters.
Mum grew up with no brothers and her only male role model was a very mean man. Unlike the love I got from my Dad’s parents, I had no such connection on my mother’s side.
As a result of this, Dad had been - for all of the time I can remember - pretty much kept under the thumb of my mother. The result of that? Dad lived two lives.
I had the opportunity on several occasions to accompany Dad to his bowls club when he had been feeling well. Lawn Bowls is an outdoor gentlemanly game that’s played on manicured lawns with heavy bowls and lots of senior citizens drinking tea and swigging beers.
When I witnessed Dad in this environment, I saw a very different man than what I saw at home. Dad came alive around his bowls mates. He laughed and bantered all afternoon long. It was his sanctuary, his happy place. It made me sad that two people, my parents, had stayed together for so long even though, to my young eyes, they seemed rather unhappy in each other’s presence.
I witnessed time and time again the performance that was put on when visitors came. Only for things to ‘click’ back into normality once again when they had left. As they say, ‘We really don’t know what goes on behind closed doors’.
It was the witnessing of this behaviour, and the development of it in my sub-consciousness that had left a significant block between me and Mum. Inadvertently, I kept siding my father, and every time I witnessed this behaviour, I rebelled in some manner.
These patterns existed right up until this period at the hospital. Before this, when I returned, I couldn’t stand being in the same room as my mother. What had made the situation harder for me was my internal battle and commitment to care for these two people who had brought me into this world.
I think the complexity of this situation can be best explained by the night I rushed to the hospital with my mother after finding her in a pool of blood in her bedroom when I came home one day.
Sitting outside the emergency operating theatre, waiting for news if or not your mother was going to make it was another one of the toughest things any child could experience. That particular night, my mother pulled through, yet it changed nothing between us.
Looking after one elderly patient was hard. Looking after two stressed me out, and made life incredibly difficult. I’m glad I had spent eighteen months of my life working hard on myself, searching for answers, becoming free in the mind and the soul before I returned to Australia.
If I had not gone through that process, I don’t know if I would have been strong or resilient enough to go through what I have for the two and a half years since I started taking care of my parents.
One night at my parents’ place, I decided that I would share how I felt.
Why should I feel this way and not speak up?
I thought to myself. For goodness sake, I am a fifty-year-old male, not a twelve-year-old boy anymore.
The mantra of “a child should be seen and not heard” was something that had existed forever in our family home. The right of opinion was frowned upon or even ridiculed.
When I did sit down with my parents and explained how I felt, I quickly realised what a huge mistake I had made. My mother turned defensive immediately. She just looked at me, and said,
“If you aren’t happy here, Mark, then leave. We will be ok.”
Dad, on the other hand, said: “So, you are telling us we are bad parents?”
Ouch. I was devastated. All I wanted to do was to have a real, authentic, open and cleansing conversation with my parents. Something that had never happened in my entire life, and was not going to happen that night either.
I ended up going to my room and bawling my eyes out for hours. I felt so alone, hopeless, and also selfish. My room from that night became my sanctuary. I didn’t eat meals with my parents. I didn’t converse unless it was about medical appointments, food orders and basic household needs.
Then, when a medical emergency occurred, we went into this military-style reaction plan. I would call ambulances, travel to the hospital, and sit and stay until either one of them - on one occasion both were admitted at the same time - would be discharged.
No one in my entire world knew what was going on, how hard it was, and how it was slowly but surely killing me.
I also felt sincerely sad for my parents. Here I was, back in town, back in their home and this misery existed because of me. Damned if you care, damned if you don’t. I am sure that they would much rather have the life that they were ‘used to’ for the past fifty-five years together before I came back and rattled the cage.
Why did I stay?
To be honest, I would say out of duty. As the only son, as a fifty-year-old man who had never had children of his own, this was the only thing I knew to do. And I thought it was the right thing to do. It tore me apart every day and every night. I kept wondering, should I be here or should I go?
Day merged into night, into day again. There was little relief from the intensity of the situation and each time Mum or Dad had a medical event it was major.
Dad’s conversation about the dialysis situation with Mum seemed to end rather calmly. Dad had made his decision and Mum’s attitude appeared to be the same as mine. Only I couldn’t tell if she was lying too.
I couldn’t quite understand Mum’s position in all of this. I’d watch and listen, noticing how very business-like she would handle each situation, constantly referencing her personal medical issues and hospital experiences.
As the days went, on Mum’s visits reduced in duration. I almost felt as though Mum was jealous that Dad and I starting to have a better connection. All thanks to cricket, and then later the tennis Australian Open.
“I bet you want to watch the tennis tonight, right?” he asked after Mum left that day.
“No,” I said. “Let’s watch cricket,” I knew two teams that Dad liked were pitted against each other that night.
It was something as simple as that which started to change everything. The ongoing fish and chip haul, which now also included chocolate cake for dessert and even his favourite Pavlova had also lightened him up.
The next day, however, we got some news that no sugar fix could overcome.
We had both had another good night’s sleep, even with the nurses making their rounds twice in the night.
On Dad’s board above his bed - which usually lists the type of diet the patient is on - the nurses had written fish and chips, and drawn a bottle of Corona beer. They started to get to know my Dad as Barrie rather than a patient, and his mood increased as the stay lengthened.
Crikey, we even had a crew of five staff in the room on one night watching one of the cricket games with us.
Dad wanted to charge an entry fee and insisted that they bring a plate of yummy food if they wanted to stay to watch the game.
Despite this seemingly jovial mood in the air, Dad’s condition was deteriorating every day, to the extent that he needed assistance to walk to the bathroom, to shower and to do just about anything.
The next morning was Friday. The doctors did their rounds and Dad’s cardiologist visited to give us an update on his failing heart, his medicine regime, and what was going to happen next. Nobody was ready for what was going to come on this particular morning.
Dad liked his cardiologist.
The man was a straight shooter, no bullshit. And when he left you knew exactly where you stood. I liked him as well and he had made a name for himself across the medical world in Australia and overseas. On top of that, he was a marathon runner so he got an additional badge of honour from me.
You know that feeling when some people walk into a room and you just know the news they bring isn’t going to be good? Well, this is what I felt as soon as the doctor entered the room that morning. For one, he closed the door behind him when he came in.
“Gidday Barrie, how are we going?” he greeted Dad as he usually did.
Dad perked up a bit, liking the authority present in the room and embracing that glimmer of hope that he could be discharged.
“Good Doc, fit as a fiddle,” Dad replied.
The doctor laughed and pulled up a chair next to Dad’s bed.
He acknowledged me with a nod. He wasn’t one for small talk so we got straight into it.
“Well Barrie, I have been looking at your blood tests every day and there are a few things that really concern me,” he started.
Dad’s face fell glum.
“You see, the continuation of the pressure that your heart is undergoing, and because of all of your previous heart attacks, your heart is in a severely damaged state.”
“With your kidneys now in the state they are in, we are finding it difficult to medicate you in fear of too many toxins getting into your body. What we are giving you for your heart is destroying your kidneys and vice versa.”
“I see,” Dad replied.
“I have come in today to let you know and to have a talk with you about this. I’d like to discuss what we can and can’t do for you. If we continue doing what we are doing now, either your heart will petter out or your kidneys will stop working. I understand that you have refused the dialysis option?” the doctor asked.
Dad was now down to just nodding as a response.
As I sat there next to Dad’s bed, I wanted to reach out and to hold his hand. I knew though how much he would hate that, so I didn’t.
“So Barrie, I am starting to think the best thing we might be able to do for you is to stop all of your medication,” the doctor said.
Oh my god, I thought. Did I just hear what I think I heard?
I looked at Dad. He had a vacant look on his face, so vacant it looked like he was looking right through the doctor in front of him.
The doctor paused and waited for a response.
All that Dad could muster was a single: “Oh.”
The doctor picked up again, “So our plan would be to make sure that you have an AMD in place. AMD stands for an Advanced Medical Directive. It is a legal document that states that if a patient goes into an unconscious state whether life support systems would be used or not.”
I knew what an AMD was. We had done one of these when Dad was in the hospital the last time. Dad didn’t want any life support systems to help him stay around - he didn’t want to be a vegetable.
As Dad listened to the doctor, I could see another ray of hope being torn out of him. I couldn’t imagine for one second what that felt like. The man you had put so much trust in, the man who had saved your life several times was now inadvertently giving up on you.
I sat helpless and emotionless. I wanted to cry, scream, and to run out of the room. I wanted to stop the doctor from talking, but I knew deep down that the truth will set you free. We had no choice but to listen.
There was more.
The doctor went on.
“If we do that, that is to stop your current treatments, then we think we should move you over to another hospital where they have a great Palliative Care ward.”
I couldn’t believe what I was hearing. We had just watched cricket the night before, Dad had gobbled down another plate of fish and chips and enjoyed half a glass of beer, and here we were today being read the last rights. What was going on here, could someone please tell me what I missed?
I couldn’t stay quiet.
“So doctor, all I hear is that you guys are giving up on my father?” I asked.
Ouch, that came out a bit strong, but I thought fighting fire with fire was the natural thing to do right now. My Dad’s life was on the line. I took a moment to digest what I just said as did everyone in the room.
The doctor eased the growing tension.
“This is a difficult time for any family,” he said to me. He then returned his attention to my Dad. “And Barrie, unfortunately, we have travelled this journey with you and your heart over many years.”
I couldn’t help but wonder if that last remark was a jab at me for not being around, only to be here now, firing up at my father’s last dance.
“Yes, Doc. I realise that my heart is pretty stuffed,” Dad solemnly said.
Then Dad said something that terrified me.
“So without the medication, how long could that go on for?”
I didn’t want to think about this right now. I didn’t want to hear what the doctor’s response was going to be. I wanted to put my hands over my ears.
Come on! I shouted inside me. I was just starting to connect with this man, my Dad, do not take him away now, no, don’t do this! I was screaming inside, my palms were sweating, and I was fidgeting in the chair.
Then the doctor hit the nuclear button.
“Well, if we stop today, there is a solid chance that I may not see you when I come to work next week.”
My whole body froze. For all of those people across the world that send out those memes around TGIF, you have no idea what this particular Friday was feeling like right now.
Dad’s eyes started to well up. In my fifty years, I had never seen my father cry. Was this to be the first and last time?
As quickly as that waterworks started, it stopped. I don’t know how Dad did that, but he did. His eyes were miraculously dry again.
“Well, if you think that is the best course of action, then let’s do that,” Dad spoke.
I was broken, my Dad had surrendered.
“Barrie, I am sorry, there is not much more we can do for you. I will make sure that you don’t have any pain, ok?” the doctor said as he reached out his hand to shake my Dad’s hand.
Dad nodded again, and just when I thought I couldn’t take anymore, Dad added.
“Doc, I will see you next week. Have a good weekend.”
The doctor wished us both a good weekend and then walked out.