Jonathan could still manage moist minced food, and he managed well every time he came to spend a weekend with us. Within my home I was free to do what I considered best – and I was happy to take the consequences.

The dietician had decreed food must be puréed, and she was under the Head of the Health Care Team …. His feeding regime was being manipulated for their purposes, which included increased government funding if he was tube-fed. It was also easier and quicker for the staff at the home. The care workers had to follow what was charted.

And the weight charts? We did not receive them regularly – but when we did, we noticed a significant decrease in his weight once he was put onto puréed foods. We were not surprised.

**********

And then of course, the following year, it happened – what I had dreaded most.

He became ill. Very ill – and being non-verbal he had no way to explain his pain or discomfort.

Initially, the doctors at the nearby small country hospital could not determine a diagnosis. To prevent possible complications, and doubtless “to prevent aspiration”, he was not fed. He was simply placed on a glucose drip for around ten days or more. He had no fat to lose, and of course he lost weight.

One day, while we were visiting, he had the worst epileptic seizure we had ever seen – probably because his epilepsy medications were also on hold.

He seemed to be dying, and I just automatically cried out “NO!” He was critically ill.

I was not ready for him to die. An emergency response team quickly arrived and treated him. He had another bad seizure that evening. But he held on. He was tough. Even as a child, he had always been strong, despite the extensive list of his disabilities. The other children were susceptible to seasonal illnesses, but he very rarely succumbed to anything.

Finally, the medical team inserted a nasogastric tube in order to feed him and build him up. He hated it, and with his good arm, his left one, he succeeded in pulling it out time after time. And each time they reinserted it, they had to do an X-ray to check it was positioned correctly. It became a battle of wills.

Eventually he was found to have a cyst on one lung, so they gave strong antibiotics to shrink it, and that treatment was effective.

I approached the doctor, and asked him directly, “Is this cyst the result of aspiration?”

His response was that aspiration as a cause was extremely unlikely, based on the position of the cyst on his lung. However, that was not sufficient for the Head of the Health Care Team.

“He must have aspirated,” she declared vehemently. She had always been very confident of her own abilities to diagnose, even though she was not a doctor. We’d already experienced her diagnostic skills – by a phone call – when Jonathan fell out of his bed, because the bed rail was not raised. She had not diagnosed his broken jaw!

During the three weeks Jonathan was hospitalised, she organised a couple of meetings with the CEO and us.

Yet again the benefits of tube feeding were expounded, yet again we were informed of the necessity of having him tube-fed to build up his weight, and to avoid aspiration. It was a very simple and straightforward procedure, I was assured.

Their “purée everything” strategy had made it so that he couldn’t or wouldn’t eat – and they would get their way. They were determined. Another battle of wills.

By this time, I had reached the inevitable conclusion that despite what the doctor at the hospital had said about the cyst being unrelated to aspiration, despite my informing them several times of Sheryl’s dying wishes, despite my literally begging them to feed him nutritious food presented in a way he would enjoy and eat, if they were patient and gave him sufficient time … despite everything, I had lost the battle.

Jonathan who had loved food, and had always eaten as much as, or more than, my husband, Jonathan who loved international cuisine … Jonathan would die unless something changed, because he was no longer willing to eat and drink. And the less he ate and drank, the weaker he became and the worse his muscle tone and jaw strength were becoming.

Which was cause, and which was effect?

My husband and I finally agreed with each other to accept that he would need to be tube-fed.

I heard Sheryl’s voice pleading with me to not let tube-feeding happen – how could I forget her words? I felt that I had failed her, had not fulfilled her deathbed wish. More than that, I felt I would be failing Jonathan.

Before I had time to let them know we would give consent to the tube-feeding operation to change his life, they had just a few more things to say.

“If you don’t agree, we will hold you legally responsible for his death,” smirked the CEO.

The best form of defence is said to be to attack the other person. They perhaps were aware that they were responsible for his choosing to eat and drink minimal amounts. They did not want to be held responsible if anything should happen to him – and perhaps they were starting to realise the folly of their ways. So … they attacked and with a vengeance ….

It was impossible for them to admit that their own procedures had turned Jonathan off eating and drinking, and it was impossible for them to acknowledge that an extended period without food in the hospital had put him at further risk.

It was all on my shoulders. I would be responsible for his death. As if it was not stressful enough to see him so ill, in a small hospital an hour and a half away, they chose that time to attack.

I would be held legally responsible for Jonathan’s death! After caring for him for so many years, (twenty-two years to be precise) both in my home and in advocating and standing up for him in this place, his death would be my fault.

“Furthermore,” he continued smugly, “as you don’t seem to be willing to comply and submit to what we say, perhaps we should rethink Jonathan’s placement with our company!”

They were prepared to kick him out.

**********

Is it love to keep a person alive but unable to have any control over his own body? Food was really the only area where he could exercise control – he could choose to eat or not eat, and he made his preferences for different foods very clear. No one was ever in any doubt as to whether he enjoyed a food offering! No one was in doubt that he hated puréed food.

Would it have been more loving to let him die? But could I just let him choose to not eat or drink until he got so weak that he died?

Was I just too concerned about my own self, and fearful about the outcome of my legal responsibility in causing his death?

And yet, how could I just let him die? I cared about him. We all did. When the crisis came, I could not deny him the opportunity to live, simply because I knew I was right. At what point can one say for someone else, “Let him die”, if there are ways to treat the problem? Even if those ways are not desirable ….

I did not believe the tube-feeding was inevitable – it should not have had to happen. It was a failure of the system to acknowledge him as an individual and to respect and cater for his personal needs.

Multiple factors had led to this, but it was too late now. They, and their protocols, would not change, and Jonathan was no longer interested in eating and drinking what they offered. He would continue to lose weight, and he now had no reserves of strength.

I consented for the operation to have Jonathan tube-fed.

**********

If I didn’t give permission for tube-feeding, he would continue to refuse to eat, or to vomit back up the slop they gave him and probably aspirate on that, and he would become ill again – and he would die.

And if he didn’t die, they would refuse him a placement. Where else could he go?

We were caught between a rock and a hard place. I had prolonged the inevitable by many years, around nineteen years since it was first suggested “for my convenience”, but now, finally, it was a medical necessity.

I signed the permission papers with a very heavy heart, plagued by guilt and an overwhelming sense of failure.

Surgery was scheduled for as soon as he was well enough.

I could not fight the system any longer.

The triumphant look on the faces of the CEO and his Health Care Team sickened me.

To this day I wonder if I made the right decision.