jmgoyder

wings and things

Chapter 35: The decision [2011]

By the time Ming was 18 the moderate scoliosis he had been diagnosed with a few years prior had gone rogue. Most of his spine was now in the shape of an S and what was previously only visible in an x-ray was now visible to the naked eye when he took his shirt off and the 75% curve was alarming and only getting worse.

We had tried everything from an elasticized back brace, to chiropractic, physical and osteopathic therapies, to personal training. Nothing worked.

Surgery was now the only option and, after a year or so of regular appointments with the spinal surgeon and his team, it was scheduled. I was terrified.

I knew that it would be at least two weeks before I would be able to bring Ming home because after the surgery he would be in a rehabilitation centre for awhile. As all of this was going to take place in Perth, two hours north of the farm, I had to figure out what to do with Anthony as he was now totally dependent on my care and I had long since quit my job at the university to look after him.

It was a great relief when I found a nursing home that had a room available for two weeks respite. At this stage, Anthony’s Parkinson’s was well advanced but the dementia that came with it was not, so agreeing to this was not easy for Anthony. He was reluctant of course and probably very frightened, but there was no choice.

Ming’s surgery and rehabilitation went well and is another story. Once I got him home in his stiff silicone post-surgery brace, I went straight to the nursing home to pick Anthony up. He was overjoyed to see me and eager to come home. But as I was packing up his things, one of the head staff pulled me aside for a word.

Outside, in the corridor, she told me that the room had become available permanently if we wanted it. This was a shock as the idea of Anthony being in a nursing home for good hadn’t occurred to me and I had a flashback to a conversation Ming and I had had with our doctor a couple of years before where Ming had said adamantly, “We will never put Dad in a nursing home!” At the time, the doctor had smiled sympathetically and said, “You may have to.”

For months various family and friends had been gently suggesting to me the idea of a nursing home as I had become fragile with fatigue. Anthony’s particular type of Parkinson’s often rendered him immobile and incontinent, and the nights had become a nightmare of sleeplessness for me as he required constant tending to. One of the strangest features of the disease was the way it affected Anthony’s internal thermostat and he was always cold even on the hottest of days. During the nights he would call out to me constantly to either adjust the blankets or help him to the toilet. As a result I found myself avoiding him during the days and, to my shame, I would often ‘hide’ in my little office just checking on him now and then. Mostly he would be dozing in his armchair with the television on, or sitting contentedly on the front veranda, staring at his paddocks. I had come to dread the sound of my own name; “Jules, Jules?” he would call and I would swallow my irritation and face the long, slow voyage to the toilet, helping his feet to move by saying “1, 2, 3” over and over again.

Due to the crowd of people on the waiting list for this nursing home, a decision had to be made quickly. I went back into Anthony’s room with the good/terrible news and what followed was probably the most heartbreaking conversation I have ever had with anyone. And this was the man I adored.

I blogged about all of this at the time so it’s just a matter of looking back at those posts to check I have the details right but I’m too nervous to do that yet. Remembering that day is hard enough; I’m not ready to re-live it. In fact, the more of these vignettes I write, and there are plenty more, the longer I put off going back to those past ‘as-it-happened’ posts many of which will form the structure of one section of the book.

We had our tall, uncrooked son back, I didn’t have a job and yet I was exhausted and now my husband was in a nursing home. For the rest of his life.

The decision was made.

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Chapter 34: Anthony’s generosity [1990]

During the years we dated, one of the things I didn’t particularly like about the man I loved was his extreme carefulness with money. By 1990 I had embarked on post graduate studies at a university in Perth, 200 kms north of Anthony’s farm so we would take turns visiting each other on the days he wasn’t milking the cows and/or I wasn’t either in class or working.

I was renting a funny little bedsit and working at a local nursing home part time. Needless to say, I was pretty much living hand to mouth in typical student fashion. I drove a terrible old bomb of a car which continually broke down but I was used to that.

One night, on the eve of one of Anthony’s visits to me, I knocked off work and my car wouldn’t go. It turned out to be the gear box which I knew would be a major job and very expensive. I think I took a taxi home, something I could ill afford.

By the time Anthony arrived the next afternoon, my car had been towed to a mechanic and I was a bit down in the dumps about having no transport but Anthony assured me that he had a good idea. He told me to jump into his rather beautiful car and we took off.

Oh, I thought to myself with a little cartwheel in my heart, he is going to take me to a dealership and buy me a brand new car! I didn’t say anything as we meandered through the suburbs; I didn’t want to ruin his surprise. He was finally beginning to realize my worth, and my years of undying loyalty (although it did occur to me that he had an ulterior motive as, without a car, I wouldn’t be able to go down and visit him so easily).

Nevertheless it was lovely to realize that finally Anthony was going to open up the purse strings of both his wallet and heart to me. I had been going through a phase of longing for a marriage proposal but, oh well, a new car would suffice for the moment.

“Nearly there,” Anthony said, grinning at me. Indeed, we were in an area of Perth full of car yards. My excitement grew as he pulled into one of them. I was slightly disappointed to see that all of the cars were definitely second hand but beggars couldn’t be choosers I thought, philosophically.

“Why are you frowning, Jules?” Anthony said, laughing fondly, “I am going to rent you a car for a couple of days until yours is fixed!”

Oh!

I looked up at the sign above the office door; it said “RENT-A-BOMB.”

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Chapter 33: The distance between [1978]

Sometimes I admire my younger self and sometimes I despair at her idiocy.

Riding a bicycle from Boyanup to Dardanup, rain or shine, this younger version of me would pedal the 12 kilometres madly in order to get to the farm by 8am to help Gar do breakfast.

Sometimes, Gar would greet me at the back door with a reprimand “You’re late!” but mostly she was grateful that I had arrived to do breakfast for herself, Anthony, and the two farm hands,

There were two tables on which breakfast and lunch were served: one was the dining room table and the other was the kitchen table. Fortunately for me, once I had served everyone, I was invited to dine with Gar and Anthony.

They must have seen me as somehow worthy of this privilege? On one extremely stormy day, my dad decided to drop me off and he met Gar. I will never forget it – they just exchanged a look underneath the orange tree close to the house.

And that look changed everything.

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Chapter 32: Moonflower [1977]

Outside the back door of the farm house the pavement had been skewed by the roots of a camphor laurel tree someone had planted before Anthony, Gar and the younger brother bought the farm [1960?]

This was a huge, disruptive and unkillable tree that Anthony got several tree-loppers to cut down and/or poison again and again over years! All of these attempts were futile; this tree was a botanical version of Hercules and I have to admit that I retain a bit of sentimental fondness for this tree.

Adjacent to this dominating tree was another, kinder, species of plant – a cactus that Anthony called the moonflower. At that stage, new to the job of looking after Gar and trying desperately not to blush whenever Anthony winked at me, I couldn’t have cared less about either the tree or the cactus. I was too busy learning how to poach eggs on the marmalade scarred Aga.

But one morning, as I was attempting to make breakfast, Anthony rushed in from milking, grabbed my hand and pulled me out the back door to see the moonflower flowering. We stood, hand in hand, looking at the biggest flowers I had ever seen.

The beauty of that moment has stayed with me for decades, because the flowering was so temporary and yet so exquisite.

When Anthony let go of my hand, I rested it against the camphor laurel, knowing somehow that I was in for the long term.

[Note: I have some of the dates wrong but will fix this in the final edit]

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Chapter 31: The death of Gar [3rd April, 1979]

By the end of the year that my father died, despite the fact that I had become ensconced in Gar’s and Anthony’s household, I decided, reluctantly, to leave in order to pursue a career in nursing. I stayed until they found a replacement “Do-for” woman and I went to Perth.

The hardest thing about this particular decision was not leaving the proximity of Anthony who now had the age-appropriate girlfriend; the hardest thing was leaving Gar with whom I had developed a deep attachment which was mutual. I felt terrible guilt which was compounded by my guilt at moving 200 kilometres north of my recently widowed mother.

So, in early 1979, I began my nursing training at St John of God’s Hospital in Subiaco, and also got a job at a nearby nursing home. I lived in a shared house with other students.

It was extremely difficult to concentrate on both my studies and my job as I was in a constant state of anxiety about both my own mother, and Anthony’s mother. I rang them all weekly, sometimes more and, during one phone call, Anthony said Gar was in hospital with pneumonia.

The following day, I went to work but got very light-headed during handover and was sent home. That near-fainting attack eventually subsided and I somehow got the next week off. So I took the train down to Bunbury and every day, for ten days, my mother drove me to the hospital in the morning, on her way to work, and picked me up on her way home in the afternoon.

It was pretty evident, during the ten days I sat with Gar, that on top of the pneumonia, she had also suffered either a stroke or a series of strokes because her ability to vocalize rapidly diminished. To begin with, she was lucid enough to actually ask me to light her cigarette (allowed back then!) But gradually, over the days, she became too ill to express anything but a moaning frustration. I held her hand and sat for hours and hours holding one hand or the other. Her brothers, sisters, and adult children all visited at which times I would withdraw into the waiting room to give them privacy.

I think it was around three days before she died that she managed to get that last sentence out to me and I was lucky enough to catch it. It was a question really: “Will you look after Anthony?”

I said yes.

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Chapter 30: Hindsight [2021]

Hindsight is a bit of a folly in the sense that, for me anyway, it just makes the guilt of past mistakes sharper. For example, hypothetically, I shouldn’t have/said/done/written this. Or that. But I did.

Most of us know the experiences that hindsight gives us – regret, new wisdom and, sometimes, a determination to do better in the future. Why else would so many of us say, or at least think, ‘In retrospect, I would/should have done this differently.”

None of us can predict the future any more than we can change the past.

In hindsight, I would have given Anthony that ultimatum years before I did and, by now, we would have several children. But we wouldn’t have Ming.

In hindsight, I would have noticed how ill Anthony was becoming instead of putting it down to ageing.

In hindsight, I would have loved him more than I already did.

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Chapter 29: The Parkinson’s disease diagnosis [2009]

Most people associate Parkinson’s disease with the tremors, the shaking hands and the wonderful Michael J, Fox who continues to lead, and fund research into this strange disease.

I began to notice how much difficulty Anthony had in, for instance, opening the jar of vegemite at breakfast. He also started to shuffle rather than walk and he became even more stooped than he already was. It was subtle and insidious and odd.

On my days off from work, Anthony would ask me to drive him to wherever he needed to go and one day, during our drive to a doctor’s appointment about his diabetes, I lost the plot.

Me: Why the hell can’t you drive yourself? Why do I always have to be with you every second of every day of my days off from work?

Anthony: I don’t think I can drive any more, Jules.

Me: Why not?

Anthony: It was that one-way street incident in Perth when you panicked.

Me: Well you made a wrong turn – what was I supposed to do?

Anthony: I’ve lost my confidence.

Me: And that’s my fault?

We had parked at the doctor’s office and I was now crying with frustration and remorse at being so horrible to Anthony, but I was so annoyed! I could see that I had hurt him but he was, as always, nonplussed and, strangely, blank.

Once were in our doctor’s office, and the diabetes solution reached, I let my tears out and described how Anthony now refused to drive and I had just found this out. Anthony quietly conceded that this was true. My car-mad husband could no longer drive.

“It’s possible that you may have a form of Parkinson’s disease,” our doctor said to Anthony.

What?

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Chapter 28: Unbreakable [1993-2018]

Sometimes you don’t know how strong you are until you get the wind knocked out of you a few times and you develop a way of bouncing back up. That’s what happened to us – to Anthony and me. One devastating diagnosis after another, year after year, we bounced back up. Well, I wasn’t the one who was ill of course but the emotional impact on me was huge.

The hardships we had endured and Anthony’s deteriorating health seemed to make our relationship even stronger than it already was. The joy we had in each others’ company was quite magnificent and was still there the moment he died. It’s still there now and I can summon it any time I want to – a gift that never loses its shine.

We made each other laugh. A lot. And loudly, until Anthony’s voice became a whisper. My guffaw became enough for both of us. There was much more joy than pain and Anthony’s incredible resilience and uncomplaining acceptance of his illnesses was remarkable to me.

Bouncing back up. Unbreakable. Us.

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Chapter 27: Warning signs [1995…]

I married a robust, healthy macho machine but this very quickly changed. Anthony began to succumb to one disease after another. Good friends laughingly suggested that marriage didn’t agree with him. I, too, laughed through my tears of empathy when Anthony was diagnosed with a kidney cancer that entailed two operations because the first one erroneously deemed the tumour benign.

For richer or poorer and in sickness and health: I was prepared, but not prepared enough. In marrying someone 23 years my senior, I knew that one day in the far future he would be old and I would still be relatively young. I didn’t forsee the illnesses and I certainly didn’t forsee Parkinson’s disease dementia.

The deregulation of the dairy industry was a terrible blow but Anthony had already retired by then and we had a contingency plan. I think it was more the way the dissolution of his partnership with the younger brother affected him. It wasn’t just the fact the Anthony was put into a situation where he had to choose between his wife and his brother, it was also how the many years of waiting for his brother to sign the dissolution, that he himself (brother) had orchestrated, began to take its toll on Anthony’s health.

Anthony tried so hard to please his younger brother, financially and emotionally but our marriage was still deemed a kind of scar and still is.

Was Anthony’s Parkinson’s dementia exacerbated by the above? Yes.

It killed him.

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Chapter 26: Grapefruit marmalade [1978]

Under the tutelage of Gar, I gradually learned to cook things like underdone scrambled eggs and salmon mornay on Anthony’s brand new Aga. He had bought this beautiful, bright red stove the year before I came into the picture and it was his pride and joy.

Every day, sometimes twice a day, he would polish the Aga which is why, to this day, it still looks new. It ran on kerosene and it was always on, warming the whole house. There was a boiling hot plate and a simmering hot plate, a roasting oven and, underneath, a slow cooking oven.

Anthony had some very strict rules about how to use the Aga which included not frying any food likely to sputter, never heating up milk, never leaving anything to boil unwatched, and definitely always cleaning its surfaces after cooking anything.

At the time the farm had a small orchard with several orange trees and a couple of grapefruit trees. One day, Gar decided to teach me how to make grapefruit marmalade. I wasn’t particularly excited about this idea until she said that Anthony loved it.

So we ventured out to the orchard, Gar with her walking stick, and me with my eagerness, and picked four grapefruit. Once back in the kitchen, Gar instructed me on how to cut up the grapefruit, how much sugar and water to add and I placed all of this in a large saucepan on top of the boiling plate of the Aga.

Anthony didn’t know we were doing this as he was milking the cows. I helped Gar to her bed for her afternoon nap and returned to the kitchen to watch the marmalade. After about half an hour, when the mixture still hadn’t boiled, I decided to go over to the dairy and fetch some milk.

As always, on seeing me with the milk billy, Anthony yelled “Jules!” and, as always, I fought the temptation to swoon. “We have a surprise for you,” I said shyly as he used a scoop to swish milk into the billy.

He grinned.

On returning to the house I was greeted with a strange smell and as soon as I entered the kitchen I realised with horror that the marmalade had boiled over and its syrupy overflow had not just soaked the top surface of the Aga but had bled into the hotplates.

The sense of panic was terrible. At any moment, Gar might wake up and in exactly an hour Anthony would be finished milking. I did my very best to clean up but the burnt sugar smell still permeated the house when Anthony came in.

He was not forgiving as he took the top of the Aga apart to clean the damage. Gar got up and frowned at me. I said the word ‘sorry’ a million times then got on my bicycle to ride home.

It was several weeks before I received another grin from Anthony.

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