Just a few months after his PEG-feed operation, I received another phone call from Luke.

Had the Health Team advised me that Jonathan had an infection around his stoma site – the place where the tube enters the stomach?

I answered in the affirmative. Communication had perhaps improved – they had mentioned briefly that they were treating some redness on his belly ….

“Did they tell you what the infection is?” he queried.

No, they hadn’t. It seems the communication still had not improved sufficiently for them to tell me all things honestly, as the Guardianship Tribunal had declared necessary.

“It is a Golden Staph infection, otherwise known as MRSA (Methicillin-resistant Staphylococcus aureus), a type of bacteria which has become resistant to most of the antibiotics used to treat ordinary Staph infections.”

I was aghast. I knew this was very hard to get rid of, and it could be fatal. The fatality rate is around thirty percent.

Fortunately, it eventually healed – after several weeks, but as this infection can lie dormant within the body, I knew I would have to be alert in the future.

I later found out that another client had died a short time earlier from the same issue; his death was within a few months of becoming tube-fed.

I received one last phone call from Luke. His employment had been terminated – for some unexplained reason he had been made redundant. He was moving interstate. It didn’t take much for me to put two and two together and come up with the right answer.

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Six months later, we reappeared before the Guardianship Tribunal, a different panel this time. We were able to agree that communication was better than before. It was still not great, in my opinion, but I was trying to be positive, not wishing to be perceived as a complainer. The CEO’s personal assistant was asked if they wished to challenge my guardianship.

No, they did not.

The guardianship was extended – for three years.

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Disability Staff were trained in all the tube-feeding procedures, and so was I.

It was essential that the pump rate was slow. Cutting corners or going too fast with the syringes of medications and water flushes could still prove fatal. He could be sick, aspirate, and die. Even with tube-feeding.

He had lost so much muscle tone in his jaw and mouth that oral feeding was now rarely successful. He had been deprived of one of his few pleasures – the sensory experience of tasting and eating normal food.

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During these next three years, the Head of the Health Care Team left; I am not certain about when or why, as we were not informed. So … no, the communication was still not great!

However, the new Head was approachable and kept us well informed as to Jonathan’s well-being.

The following time we went for a guardianship review, the CEO’s personal assistant failed to appear. The Tribunal made some calls to the disability service. It seems that she had forgotten all about it; she had gone interstate on a training course.

The Guardianship Tribunal panel was not impressed: the chairman of the panel asked me if there was anyone else who could speak to them. I suggested the new Head of the Health Care Team, even though I didn’t know her very well, and told him so.

Nevertheless, he phoned her and put her on speaker phone, asking her, totally unprepared, about our involvement with Jonathan, whether communication was satisfactory, and whether I was making good decisions about his health and well-being.

Impromptu, and not knowing that we could hear every word along with the full Tribunal panel, she gave a glowing report about each aspect, and said she held us in high esteem. Neither she nor any of the care workers had any issues or complaints whatsoever.

It was a lovely moment of affirmation, and I was deeply moved.

Guardianship was extended to five years, and it would be simply a rubber stamp of approval for us to continue indefinitely to be Jonathan’s guardians.

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Jonathan certainly put on weight once he was tube-fed – there was no other option. He looked less gaunt, and even developed a little double chin.

However, I could no longer lift him out of his wheelchair when he visited. His spasticity and rigidity, combined with the extra kilograms, made lifting almost impossible even for two of us.

We could therefore not host him for a weekend – it had to be day visits, as he needed regular changes of positioning, and we did not have the equipment necessary. At his home they had hoists and shower baths which could be raised and lowered.

Nor could he go out anywhere for a whole day unless there were sterile conditions for administering his feed, and for the syringes of medications and water flushes through the tube. None of these social complications had been communicated previously.

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Around this time, the CEO of the disability service left; the reason given was that he needed to look after his ailing wife. I have often wondered if he is still a member of the board of the Guardianship Tribunal. His personal assistant also left at around the same time.

They had all gone! I did not miss their leadership in the least. The stormy waves of sixteen turbulent years of Jonathan being in their care were subsiding.

There was a welcome period of calm. After the challenges we had faced with that manipulative, deceitful, and bullying team in charge, we were relatively happy that things seemed to have settled. Finally.

By now we had reached twenty-six years of caring for him, in one role or another.

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There were now capable people involved in his Group Home; Jonathan always enjoyed his Day Program as well, which had an excellent Program Team Leader who had worked with him since his initial arrival at the institution many years previously.

She cared deeply for each of her clients, and she was very professional, highly respected by all who knew her; she was a thoughtful and creative person, designing activities which were interesting and suited to individual needs and skills. She maximised communication with the help of technology where possible.

We had always related well with her, and every year she invited input from us with planning for his individual program.

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A vacancy became available in a Group Home significantly nearer to us, only twenty minutes’ away rather than an hour, and the staff in that home was apparently stable and caring … we were asked to consider whether Jonathan should move there.

He would still travel to his Day Program at the centre. Jonathan continued to enjoy car travel, so we knew that he would be happy to have a forty-minute car ride twice a day, five days a week, and we could much more easily visit him at weekends.

Furthermore, there were two Group Homes side by side, and they shared a nurse on staff. Everything seemed good. Perhaps the worst was over, and we could finally relax about his care.

They brought his things to his new home. Sometime in the intervening years the expensive clothes we’d bought for him to wear to Bella’s wedding had disappeared again ….

In the big scheme of things, it didn’t matter. People always mattered more than things.

Jonathan already knew these housemates, and he settled in quickly.