Friday, January 17, 2014

A peaceful death after a tormented life

(First published in the Nelson Mail and Manawatu Standard, January 15.)
We buried my brother-in-law three weeks before Christmas. While it was painful, there was also a sense of release for both him and his family.
Andrew was schizophrenic. For many years he was a committed patient in Porirua Hospital. Later, when it became fashionable for mentally ill people to be released into the community, he was moved into a flat that he shared with another former patient.

My wife, Andrew’s older sister, managed eventually to get him into a pleasant hostel on the Kapiti Coast, close to their elderly mother and other family members, where his meals were provided and resident staff kept an eye on him. It was there that he spent his last years.
He had a measure of independence and his essential physical needs were met, but he passed most of the time shut in his room.

Did he derive any pleasure from living? To be honest, it was impossible to see how he could. From a normal perspective, his life was devoid of purpose or enjoyment.
He did seem to like being with his family, at least as far as we could discern. Andrew never showed much emotion, still less talked about his feelings.

Conversation with him, a struggle at the best of times, became impossible towards the end. Though only 58, he seemed to have succumbed to a form of dementia which I assume was the result of the drugs he had been on for decades.
He was permanently confused, asking the same questions over and over again and forgetting things he had been told only moments before.

He would rarely sit down but would restlessly pace up and down, constantly looking at his watch. He gave the impression that no matter where he was, he was anxious to be somewhere else – as if by removing himself, he could escape whatever was tormenting him. This struck me as a particularly cruel form of torture.
In his last months he developed a strange spending compulsion, splurging money on incongruous items like electric toothbrushes and cellphones for which he had no use. Clearing his room, we even found a lavish edition of the complete works of the Bronte sisters, which Andrew would never have read.

For all that, his dementia (if that’s indeed what it was) gave him a degree of peace after decades of crippling anxiety. It seemed to take over the mental space previously inhabited by fears that he was never able to articulate.
Where there were previously demons, there was now just an apparently benign haze. I regarded it as a blessing.

I had known Andrew (as everyone knew him, although his original Polish name was Andrzej) since he was at secondary school. Even then he was almost painfully shy and withdrawn.
He certainly didn’t lack intelligence. He was keen on astronomy and after leaving school, began studying for a qualification in electrical engineering.

He was in his early 20s when his mental condition suddenly deteriorated. He retreated to his bedroom. He stopped eating and washing. He wouldn’t talk.
He withdrew into a world where no one could reach him. His hair grew long and lank and his nails were uncut. He looked like one of those painfully emaciated figures you see in photos taken after Nazi concentration camps were liberated.

Electro-convulsive therapy (ECT) saved his life. I have absolutely no doubt about that. It was administered after the family doctor intervened at our request. 
Prior to our giving consent for ECT, I had consulted my own GP. ECT was a highly controversial treatment (it still is), but my doctor was emphatic. “Get it done,” he said. “No one knows exactly why it works, but it can have dramatic results.”

And so it did. It brought Andrew back from the brink of death. He never again became the same person we had known before his illness set in, but for many years afterwards he was able to enjoy some quality of life, at least intermittently.
There are lots of Andrews in the world. I’ve never encountered anyone else quite like him, but I know from our circle of friends that many families have direct experience of mental illness or intellectual disability.

Get any bunch of New Zealanders together and you’ll find, if they are prepared to open up, that there are people in their families with schizophrenia, manic-depressive illness, autism, ADHD, eating disorders or any of the other mental afflictions that restrict and diminish people’s lives.
Such illnesses can be source of great anguish, especially when the condition is such that the family can’t provide the necessary care. In those cases we have to rely on the state, and it doesn’t always respond as we might like.

Andrew’s condition was managed rather than treated – a consequence, presumably, of the mental health system being overloaded and reduced to dispensing medication.
Family members battled for years on his behalf but found the health bureaucracy frustratingly sluggish and unresponsive. Appropriate sympathetic noises were usually made, but information was difficult to obtain and it was hard to pin people down. Accountability seems more talked about than practised. 

Admittedly, Andrew wouldn’t have been the easiest patient to deal with, because he was so uncommunicative; but it didn’t help that the psychiatrists nominally treating him changed constantly and none really had a chance to get to know him.
His death leaves us with a few nagging questions. Could we have done more for him? That’s a tough one. There were times when we believed a repeat treatment of ECT would have jolted him back to some semblance of normality, but once he was no longer a committed patient that required his personal consent, which he wouldn’t give.

We wondered whether he was influenced more by what he had heard than what he had experienced himself. Horror stories about ECT being used as punishment in mental hospitals during the 1960s and 70s had made it almost unmentionable, despite its proven efficacy when properly administered. One Flew Over the Cuckoo’s Nest has a lot to answer for.
Could we have given him a better life if we had looked after him ourselves? Perhaps, but we would need to have been saints. Even the most supportive family often has to admit it can’t cope with the stress of caring for a member who is mentally ill.

Why was a gentle soul like Andrew cursed with such a cruel illness? What perverse lottery selected him to suffer, and for what reason? Those are questions I won’t even attempt to answer.
Andrew died after choking on a piece of cake that had been baked in honour of a fellow resident’s birthday. He went into cardiac arrest and his brain was deprived of oxygen for about 40 minutes.

The family decided to turn off his life support system several days later. The doctors at Wellington Hospital told us that even if he had been able to continue breathing on his own, he would have been severely brain damaged.
Did we make the right decision? I believe so.  In his comatose state, Andrew looked at peace for the first time in decades. He may have died clinically on November 28, but to all intents and purposes he had stopped living a long time ago.


John Tucker said...

Sorry to hear of your loss, and the many years of hardship. I hope he can now rest in peace.

Richard McGrath said...

I worked as a junior medical officer at Porirua Hospital in 1987, and for a while was the doctor responsible for administering ECT to morbidly depressed patients. I can confirm that it was (and is) a remarkably effective intervention that lifts people out of the abyss. As you say, it is a life saver. And in contrast to the Cuckoo's Nest, it was given humanely, with the patients under a general anaesthetic.

Medication remains the mainstay of treatment for psychotic illness. Fortunately, some of the modern medicines have fewer side effects than the older ones but they all have potential to cause weight gain, sedation and irreversible neurological damage while at the same time suppressing the psychosis.