Philippa’s story

A psychiatrist put him onto antipsychotic medication but matters got worse, he became convinced he’d committed dreadful crimes and wasn’t fit to live. After a spell in hospital he was well enough to come home and later to university.

It all happened again just before his exams and, after another spell in hospital, he lost his energy, motivation or concentration. Whether through poor concentration or despair he walked under a taxi and badly damaged his leg.

When he was in hospital for a third time with yet another breakdown I first heard schizophrenia mentioned. I immediately got onto Rethink, having been told they were the experts in schizophrenia, and got the diagnosis confirmed by a wonderful consultant who saw us for free.

My son’s reaction? ‘That’s good. I’m ill, not bad.’ My reaction? ‘I know now where to look for information and help’.

Over the years I helped him to keep to his medication. Despite this, he had a fourth period of acute illness three years ago. This time, he was hallucinating horribly and hearing insulting voices. During a long spell in hospital during he was put onto Clozapine, the medication for treatment resistant schizophrenia.

14 years later, he lives in his own flat, with a lot of support from me and his father, the mental health professionals and the lovely woman he pays out of his benefits to be his ‘personal assistant’. He enjoys activities for service users in the local community (when he’s not too afraid to go out). He watches TV and reads. He still hears voices but, with the help of cognitive behaviour therapy and the drugs, he generally sees these as useful and good company. 

What’s all this like for him? He wants me to tell you that it’s lonely and  sad to think of what you’ve lost. And, worst of all, the bouts of terrible fear and agitation are hard to bear.

What’s it like for me? Less important, of course, but I’d like to share it with you. At first, I was shocked, confused and very frightened. I suffered a period of weakness, lethargy and forgetfulness which I now know to be depression following long term anxiety. Once the psychosis has subsided and he was into what I now know to be the ‘negative symptoms’ of schizophrenia, but didn’t know then, I was frustrated and irritated by his refusal to get out of bed, and embarrassed by his unkempt appearance and weight gain. Once I had a diagnosis and gained understanding, I felt ashamed of these feelings but also empowered to do my best to help.

We all have our own ways of coping; for me it is keeping occupied with things which relate to the illness. Our tragedy is now also my main interest and my life’s work. After all, I’m an expert by experience.

My advice to carers of someone with an ongoing mental illness is get yourself informed and get a diagnosis. There are obvious dangers in labelling and diagnoses can shift, but there’s great benefit from knowing what you’re up against and what you can do to help. In short, get support, keep busy, and work towards mutual trust with the medical people.

Don’t be afraid to complain and campaign when the situation warrants it. I won an apology and a promise that new strategies would be adopted when I complained about poor treatment to the chief executive of my son’s hospital.

Do what you can to support treatment and recovery. If your loved one has cognitive behaviour therapy, then ask the psychologist about the key learning principles so that you can reinforce them at home. Practise relaxation together too. Do the crossword or Sudoku or play games together to enhance concentration.

Lastly take comfort where it’s offered. When we asked our psychiatrist about the long term prognosis, he said, “Research shows that people like this tend to get better, not worse, over the years because they learn coping skills”. My son told me a joke the other day - just like the old times!