Fading into oblivion: A rest home horror story

I requested that Jack’s EPA, his eldest son, get him out of there as soon as possible. I wanted Jack home. I’d done the research and knew perfectly well I would be able to access community help, if necessary, in caring for him.

The son refused. I then found out that Jack was now a permanent resident of the hospital ward – effectively, incarcerated, whether he liked it or not, until he died.

Jack went on behaving in a psychotic manner, totally unlike himself, totally unaware of where he was, or why. He was in despair and very angry. One night, I came back with my daughter, unexpectedly, after dinnertime, around 8pm, to find him writhing around on the carpet, again calling “Help me! Help me!” and punching the air. He was totally in the dark, no one near him.

I demanded some action. I tried to get his son to see reason, and look into things. But his response was, “They must know what they’re doing. They’re professionals.”

In fact, the doctor who serviced the place on a part-time basis was a GP, not a geriatrician; to me, his manner seemed off-hand and uncaring. Rest homes are apparently not required to have geriatricians on board as a matter of course.

Then Jack nearly died. For two days and nights, he did not wake up. He had no food or liquid. His skin was cold, grey and clammy; he couldn’t open his eyes; he was limp, unspeaking. I asked that they run some tests: blood pressure, sugar levels. Both were exceedingly low. They gave him some sugar water.

I went to see the general manager and said Jack needed a doctor or an ambulance immediately. She looked at me askance. “If we get an ambulance, and it turns out not to be an emergency, we will be charged $900,” she said.

I ran along the road to find the GP who attended the rest home on weekly visits. He was at his surgery and with a patient, so I left him a note. He came that afternoon after his day’s work and informed me he’d asked a registered geriatrician to visit Jack that evening.

The geriatrician immediately took Jack off quetiapine and my partner started on the road to recovery that same night. It was my birthday. Some friends arrived out of the blue with a cake and wine, and we had my birthday around Jack’s bed. He opened his eyes and smiled, then blew out the candles on the cake. He was “back”.

From then on, he made progress. Still confused about where he was and why, he begged me to take him home. I explained I couldn’t as his son had all the say. He was furious. He wanted to change the EPA document to register me as his attorney. I consulted our lawyer, who said Jack simply needed to express his dissatisfaction in writing, to get his recovery verified and to sign the relevant document to put the change in place.

In fact, Jack had always wanted me to accept the EPA role, but I had rejected the idea on the grounds that money might become involved if he were to need some sort of hospitalisation in the future, and I did not wish to be involved in any transactions involving his meagre savings. We’d always kept our money separate and we both wanted our small estates to be kept intact for our descendants. Both families were made aware of this decision.

The lawyer told me I would have to get a proper assessment of Jack’s ability to express his own desires, showing he was in possession of his brain faculties and capable of making his own decisions. I asked that this assessment take place. A meeting was set up involving a facilitator from the regional DHB, along with another geriatrician – with me, Jack, one of his other sons (“Sam”), plus an advocate from Elder Care for me and Jack.

Jack was asked where he wanted to live and be looked after. He stated very clearly that he wanted to be at home with me. Sam affected surprise – because, as I’d heard from Jack, this son and his wife had been coaching him to say he wanted to stay where he was. So when Jack stated two or three times clearly and unequivocally that he wanted to go back home with me, Sam shrugged with irritation and said: “Well, if that’s what he wants, he should go back to Alice’s.”

The geriatrician said he’d write up a report of the meeting and we would get a copy.

Jack and I were vastly relieved. We waited. But when the report of the meeting reached me, the conclusion was nothing like we were expecting. The geriatrician said that because the clinical manager had written in her report that Jack was “doubly incontinent” (not true), he would be difficult to manage at home. Besides, said the geriatrician, his sons had both expressed the opinion that they were very satisfied with the care their father was receiving at the rest home, and therefore he supported their opinion.

During this time, Jack’s EPA son had told the rest home very firmly that all information about Jack was to come to him. They were not to share any information about his father’s treatment or health with me. This was in direct breach of the EPA document Jack had authorised, which clearly states that, as his nominated next-of-kin and partner, I must be kept fully “informed about every aspect of Jack’s health and wellbeing and his place of residence”. The son also refused permission for me to take Jack out of the rest home, even to bring him home for lunch. At one point, an old colleague who greatly admired Jack flew from Sydney especially to visit him; Jack was not allowed to go home with me to have lunch with his old friend. The rest home went along with these draconian instructions.

I set in motion a protest through the District Health Board. The psycho-geriatric ward at our regional hospital agreed to look at the case and to employ a geriatrician to assess the situation. It then turned out this geriatrician was the same one who had adjudged that Jack should stay where he was because that’s what his sons and the rest home wanted. Jack’s feelings didn’t come into it. Nor mine, of course.

I got neither a written report nor written answers of any sort from the DHB facilitator to my queries by email. Jack was devastated. He now desperately wanted to transfer the legal duty of care to me on the grounds that his son had not shown he had his father’s “best interests at heart” – the phrase suggested by the lawyer.

The lawyer sent the necessary form for Jack to sign to make these changes regarding his EPA. Jack signed it in front of two witnesses. This document was picked up by Jack’s son and removed from his room, without any discussion. Even though Jack had signed this form, I needed to find yet another psychogeriatrician to sign a declaration that he had the ability to make his own decisions.

At that point, Jack had another seizure. A friend of ours had just visited Jack at the home and found him still in bed at 11am, unattended, seemingly unconscious. She texted me. She couldn’t get him to wake up. I arrived and assessed the situation. It was exactly as my friend had described. I noticed, though, that under his blankets, there were jerky movements. When I pulled the bedding back, I saw the muscles in his right leg were waving up and down his thigh in an alarming manner. I screamed out for someone to come quickly, to call an ambulance. I had my arms around Jack and he was staring at me, desperate and dazed. After a few minutes, the clinical manager rushed in with one of the nurses. I again yelled out to them to call an ambulance. I was told it had been ordered. Soon the doctor arrived and tried to tell me they had all been “monitoring” Jack for hours. This was not true, based on what I heard from several other staff members later.

When the paramedics took over, I was ordered out of the room. I was also told there would be no space for me in the ambulance. I was weeping, fearing this might be the last time I saw Jack alive. One of the cleaners, a lovely person, put her arms around me and helped me to gather my things. We were both crying. As we headed out to my car, the clinical manager came after us and told the woman harshly it was none of her business; she was a cleaner and to get back to her proper work.

I followed the ambulance, and stayed with Jack through the emergency procedures and all through that night. But I sensed it had probably become too difficult for me to handle. It became clear over the next week we’d lost the battle, Jack and me. The doctors and nurses in the ED and the stroke ward were wonderful. When I gave them a rundown on what we’d been through, they took it in thoroughly, were sympathetic, and encouraged me to make a “huge fuss” to the authorities about it all. They said they “got stories like this about rest home care all the time”.

Jack was returned to the rest home, with his oldest son fully in control of his father’s life, despite the fact he rarely visited and never took him out. He then moved Jack to another facility (run by the same “not for profit” organisation) 90 minutes’ drive away from me – on the pretext his family would be able to see more of him, and I wouldn’t have “the worry” of looking after him. Such hypocrisy – again. He even implied in a family email that I had been against the first institution for “virtually no reason whatsoever” from the outset.

Jack was at that second place for around six months, going steadily downhill, still being given the drug quetiapine, in spite of its effects on him, and my warnings. Possibly he saw one member of his family for around half an hour a week. They live just 20 minutes from him. I made it my business to stay with him for two or three days consecutively each week, forced to pay for overnight accommodation.

Then Jack was judged to be at “level 3 dementia” and was shifted to yet another facility – this time in a “secure” unit – which at least means there are more staff and he has some therapeutic help; he gets the odd massage, watches some movies with other residents, and so on (not that he knows any more how to join in with such things – he’s too zonked out.)

According to his son, the reason Jack has become a level 3 dementia patient was he was wandering around at nights, going into the wrong rooms. Once, when “caught” by a staff member, he apparently said he was looking for his guns. He’d also gone out through the front door and was trying to go down the street. Another complaint was that he had “gone down an interior staircase and it had taken a staff member an hour to persuade him up again”.

None of these complaints seems convincing. Going into the wrong room – well, they all look the same – even in the daylight. “Looking for guns” – if that was his fantasy, there were no guns so what was the problem? “An interior staircase” in a single-storey building? Going out the front door? Who wouldn’t try to escape? At least poor Jack is now only half an hour’s drive from me. His EPA son is trying to make out (in emails to the rest of Jack’s family) that my welfare was a big consideration!

Jack’s totally locked in, poor man. He’s depressed and confused. When I arrive to be with him, he weeps and says things like, “Oh, I knew you’d find me!” It’s heartbreaking.

He’s still being prescribed quetiapine (in a smaller dose), but topped up with large doses of the anticonvulsant drug epilim. Side effects include headaches, stomach cramps, loss of muscle control – which causes him to fall – plus agitation and aggression.

He had another bad fall out of bed and it seems he might have some fractured bones. He’s in pain, so is being given morphine intravenously, which makes him very foggy and unaware.