jmgoyder

During Ming’s childhood years it was mostly Anthony who took him to primary school in the mornings and then picked him up in the afternoons as by then he had retired from milking cows and I was working at the local university. In fact, even before Ming’s schooling, Anthony was the one who potty-trained him, got him walking from tummy-shuffling, taught him how to ride a bicycle, wash a car, and their antics never failed to amuse me.

On Father’s Days we would take the portable gramophone outside and play scratched records from even before Anthony’s time. And they would dance! I think this only happened two years in a row but the image of them dancing together on the lawn, and Ming’s giggles, is embedded in my memory; I also have a photograph.

I sometimes wonder if Ming remembers his early childhood with Anthony without the various photos. Does he remember now how much he was loved then, by Anthony? From his birth to age 5, does he remember how much fun he had with Anthony?

In thinking about this, I have decided to interview Ming for the book because I can’t possibly know how he felt, or what he thought, during those heavy years following Anthony’s Parkinsonism diagnosis. I was too busy grieving the loss of my robust husband to this ghastly disease that I may not have noticed how Ming felt and I regret my inattention to this.

One thing I know for sure though is that this father adored his son from the get-go and, as the Parkinson’s dementia progressed, Anthony would often hallucinate toddler Ming in the corner of his nursing home room. Perhaps these were his favorite memories?

When Ming and I did the TED talk about dementia just weeks before Anthony died, we made a funny story out of the day Anthony didn’t recognize Ming and thought he was the hairdresser. We laughed and the audience laughed. It is only now, as I look back, that I remember Ming saying this to Anthony that day:

“I’m your son, Dad. I’m Ming!”

It is a very strange experience to visit my past self via my blog entries before and after Anthony’s death and I have been avoiding it. But this afternoon I decided to venture back to what I wrote on the day he died; I wanted to check that what I am writing now accurately reflects then.

There was no blog entry for the 23rd of August, 2017, the day Anthony died, but there was this:

August 21, 2017: Death and dying

About a year ago, Anthony had a series of TIAs (mini-strokes) and was unconscious on and off for a few days. I panicked and began funeral arrangements but he ‘did a Lazarus’ and has been as okay as is possible since then. Recently – the last few days – I have noticed a marked deterioration and this afternoon I couldn’t wake him up and he looked deathly.

I am once again afraid even though I know that tomorrow he will probably be bright-eyed again like he was a week ago. On the other hand, I think I better go back to the funeral people and finish the arrangements just in case.

A friend of mine, whose husband has been in care for around the same time as Anthony (he had a massive stroke), has invited me to a seminar this week on death and dying so I’m going to go. I think it will help me to be more prepared mentally and emotionally. If Anthony were suffering constant pain or distress I would be wanting him to die, but he is so comfortable and uncomplaining that I can’t even imagine it.

It is so many years now that I have been trying to prepare myself for Anthony’s death – ever since the prostate cancer diagnosis when the urologist said he probably had 1-3 years to live (around eight years ago!) But then the Parkinson’s disease took precedence and has been by far the more debilitating of the two diseases.

The fact that Anthony is still such a huge part of my life on a daily basis (even when I don’t go in to the nursing home), the fact that I don’t find visiting him and being with him at all onerous, and the fact that we derive so much enjoyment from each other’s company, leaves me ill-prepared. It will not be a relief when he dies; it will be the most grief I have ever felt, and I’m not ready.

I don’t think Ming is ready either, although he just assured me that he is, well, sort of. He also assured me that he will come with me next time I make an appointment with the funeral directors. I think it’s about time we got back to the business side of Anthony’s death.

One of the things I should probably do is to figure out what to do with my ‘Anthony time’ once he is gone. Of course there is the book I’m writing and that will help, but the gap he will leave in our lives is going to be massive.

This feels like the peak of the anticipatory grief I have felt for so long that it’s like a second skin; this is the knife edge of the most terrible mixture of fear and love. But perhaps this isn’t the end after all and tomorrow Anthony will look at me, smile his slow smile and repeat what he said the other day: “You’re still beautiful, Jules.”

Two days later, Anthony actually did die. He died. Anthony died.

From go to woe, or woe to go (I am not sure which way this happened as our love story was more circular than linear), I remained absolutely certain, steadfast. I believed in Anthony with all my mind.

It was difficult to believe in Anthony with all my heart because he had uttered the unbearable sentence: “I love you, Jules, but I am not in love with you.”

Many years later, he retracted and even corrected this ridiculous statement, saying that both were true.

Semantics.

I fell in love with someone who, apparently didn’t love me back, who upset my innocence, who abandoned me. And then, suddenly, it all changed.

The weirdest thing for me is how I married the very same man who broke my heart.

Most people get over their first love.

I didn’t.

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.

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.”

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.

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]

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.

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.

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?