Schizophrenia in the family

ROBERT (all family names have been changed) was discharged from St Ita's Psychiatric Hospital in Portrane, Co Dublin, last month at the end of the 45th temporary admission for schizophrenia in his life.

Members of his family, who had learned he was getting out only a few hours earlier, drove him to a special hostel in the city centre where St Ita's had arranged for him to go. But the hostel had a strict 4 p.m. deadline for admissions and when Robert's brother Peter accompanied him inside at 4.20 p.m. they were told he could not be admitted.

They walked the streets looking in vain for other suitable hostels until Robert, a strong willed man in his 30s, struck out on his own, declaring he would sleep rough if necessary.

He had £20, given to him by Peter and his sister Fiona, but within a couple of hours he had spent it all on cough bottles, his favourite unprescribed drug. Now on a high and more than usually manic, he took a taxi from the city centre to Fiona's home in Portrane. Having no money for the £13 fare, he paid the driver with a £180 ghetto blaster his family bought him last year.

Terrified of her brother he was unforgiving about her decision to sign him in for his latest and longest period of treatment and he once broke another sister's nose in a row Fiona rang the hospital from her neighbour's house as her two teenage sons tried to calm him down. Finally, fearing the arrival of gardai and a return to the hospital less than a mile away, Robert left to catch the last bus into the city centre, leaving his family feeling relieved - but also guilty.

Furtively, Fiona checked that he was on the bus. "He was huddled up on the back seat. I didn't know what to think - I just felt lost. I knew that by not giving him a bed for the night, he was condemned to sleep on the streets. I knew he was very sick and a danger to himself and other people. But I couldn't risk him in my home."

His brother and sisters heard nothing more until Tuesday, when they got a call from one of the city's general hospitals to say he was being treated there after being found collapsed in the garden of the old family home on Dublin's - northside which is now boarded up.

Concerned at his physical condition, the family were at the same time relieved that he was getting the round the clock medical treatment they are convinced he needs. But by Thursday he was gone again, having "pulled his drips out" and discharged himself.

WHEN the family found him again two days later he was so weak that Fiona had no choice but to bring him back to her house. She knew that his staying ffor a longer period would mean her giving up her job and the peace of her home. But when he regained his strength he insisted on returning to the barely habitable family home, where (as far as the family know) he remains.

Robert first developed the symptoms of schizophrenia at around the age of 16. The onset of the condition seems to have coincided with the death of his father, a "loving but very strict man" whom he revered. Intelligent and energetic, Robert began to lose interest in school and terminated the efforts of the school principal to persuade him to come back by throwing a slipper at him.

Family friends twice tried to set him up in employment but he quit both jobs early and from then on his life has been dominated by a series of attempts to control his condition. From the age of 22 onwards, he was a frequent and almost always reluctant visitor to St Ita's.

Even on medication Robert could be difficult to live with. He heard voices and had visions. He was hyperactive, aggressive, often violent and needed to be the absolute focus of activity in the house at all times. He woke family members up in the middle of the night, "None of us slept properly for years, says Peter.

With difficulty, the family managed, thanks mainly to their mother, Margaret. But when she suffered the onset of Alzheimer's disease about two years ago, Robert's condition worsened and so did the lives of his sisters and brother.

With conditions in the home deteriorating, Margaret went prematurely into care. On the advice of a psychiatrist and after a failed attempt to have him committed, other family members moved out of the family home in April 1995, leaving Robert to himself.

"The theory was that, being clever, he'd learn to cope on his own, says Fiona. "Mammy was too soft on him. She always humoured him even though sometimes it meant she was locked out of her own house and had to walk the streets."

In the seven months following he and the house disintegrated together. The address became a magnet for "undesirable elements", according to Fiona. Everything that was removable was stolen. Windows were broken, walls daubed with paint. The fusebox was pulled out. Electricity was cut off as no bills were paid. Neighbours saw Robert scavenging in bins for food and heard him "howling at the moon", a not uncomnion feature of severe schizophrenia.

THE other family members had been advised to detach themselves from him, but with alarming rumours emanating from the neighbourhood about the neighbours getting angrier, Fiona paid him a visit in November. Even with what she'd heard, she was shocked.

"The first time I went back there, I cried. He was living like an animal. Every window in the house was gone and everything that was left inside was damp and wet. Robert was suffering from malnutrition and he was in a rash. I was worried that maybe he had HIV."

She brought him high protein food, but all he wanted to eat were cocoa pops. And when she wouldn't buy him a cough bottle, he got angry and aggressive again and she fled in fear.

But with the neighbours now involved and threatening to go to the newspapers with the story, the normally tortuous process of arranging for his temporary committal was speeded up. And when gardai went to the house to take him away, he went quietly, Fiona says. "I think subconsciously he wanted to go. He knew he wasn't well."

Back in St Ita's, his mental and physical health improved hugely. "He did resent being confined to the (secure) assessment unit, but he had his dignity back as a human being and it was wonderful to be able to relate to him again. It was great just to see his facial muscles relaxed - before, his face and eyes were like a wild animal's.

"Yes, his conversation was still peppered with white lights' following him and he was in constant contact with his father, who's been dead for 24 years. But he was no longer aggressive and agitated so we could take it in our stride."

Once before when he disappeared from the hospital while on a day pass, he went from relative normality to looking like "an animal" in the space of four days.

"This time, it happened in a day. He seems to be going down faster now, once he's off medication. And his system is running down. I feel I'm at a brick wall. I either let him die like a dog or I go to the press."

The family wants Robert to be made a ward of court, a process which requires the recommendation of two medical reports. But the principal consultant dealing with him, Dr Robert Cantrell, has advised them that a patient who, responds to treatment would not be considered suitable for ward ship.

Dr Cantrell is adamant that he cannot discuss any individual case. He is, however, prepared to talk about general procedures. Where a patient is involuntarily committed for a period, he says, it is because he is very sick. When he becomes well under treatment, the hospital cannot keep him locked up against his will.

"When somebody serves a sentence, for burglary, you may know from his record that he will likely burgle again, but you must still release him. It's not just the Mental Health Act we're constrained by there's the European Convention on Human Rights as well."

Huge amounts of resources have been care in the community, he adds. This includes special hostel accommodation with psychiatric care facilities, and provision of general aftercare. But if a person does not want to avail of the services, they cannot be forced upon him.

He is aware that families can be overwhelmed.by the problem of coping wit illnesses like Robert's and that, in some cases, they may have no choice but to detach themselves completely.

"It may be that sometimes families do withdraw from the situation. That in the struggle of looking after him over a long, period, all their goodness gets used up, even if they still have a genuine concern for his well being." There may also be cases, he concedes, with which society and its laws cannot cope.

The Schizophrenia Association of Ireland says that one per cent of all people have the illness at some point in their lives. For a quarter of these, it will be a once off experience for 50 per cent, it will be episodic, with the individuals responding well to treatment, leading reasonably normal lives but suffering occasional relapses.

A QUARTER of the total in the Republic of Ireland, this would be 9,000 people have the condition in a way that responds badly or not at all to treatment, although new drugs are giving hope that even these can be better treated.

In all cases, the family is crucial to treatment, according to Orla O'Neill of the SAI. She has just returned from a conference in Rotterdam which heard evidence from Canada that every $1 spent in family support saved 34 in hospital and other health care costs.

But families suffer great stress - from guilt as much as anything else - she says, and there is also a body of thought that too much care and protectiveness can be detrimental to the person with the illness. In cases like Robert's, the SAI would undertake to mediate between the family and the health authorities on a plan for his care. She hoped that might in time be possible in this instance.