wings and things

Chapter 35: The decision [2011]

on September 24, 2021

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.

6 responses to “Chapter 35: The decision [2011]

  1. Anonymous says:

    I weep again as I read and relive this tragic moment and wonder how you ever survived it all at the same time as seeing Ming go through such drastic surgery. Your strength surely was from God, otherwise you too, would have gone under.

  2. susanpoozan says:

    That was a double whammy but there is no doubt you made the right decision.

  3. Writer Lori says:

    The agony of this decision is evident in every sentence, Julie. I applaud your strength in the face of such a tough situation.

  4. You are incredibly brave, wise and loving. ❤

  5. A moving post about a difficult decision

  6. beth says:

    I can’t imagine how difficult this was –

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