A brother's view

09/05/2020

Understanding and support for people living with mental health conditions has improved a lot since our foundation in 1972 - but the growth in that support has been significantly slower for families caring for someone who lives with severe mental illness.  In this blog, Andrew discusses the huge challenges his parents faced when caring for his younger brother John who was diagnosed with schizophrenia in 1987.

My younger brother, John, died suddenly in 2018, less than a fortnight after my father's funeral. Three months later came the coroner's verdict: accidental death. John was 52 and my only sibling.

Hallucinations and delusions forced John, aged just 20, to abandon his geography degree course in 1986, but it took more than 12 months for a diagnosis: paranoid schizophrenia. Confused, guilty, and distressed, my parents worried about his future while grieving the loss of their athletic and intelligent son with so much potential.

Although John's schizophrenia proved treatment resistant, he never had to be sectioned. In the early years, it was difficult to cope with his moods, agitation and disturbed thoughts. He never held a job for more than a week; nor did he ever manage to live independently. Determined to support him,  my parents were his carers until the day he died. I recall my father saying firmly: “we brought him into the world; he is our responsibility.”

A practical man, my father strived to understand schizophrenia and the workings of the mental health and benefits system. He became chairman of the local branch of the National Schizophrenia Fellowship (later renamed as Rethink Mental Illness) and a volunteer on Hospital Managers' Panels to hear the appeals of those detained under the Mental Health Act.

Recently, I found in my father's desk an article from the British Medical Journal about the "gaps" of the NHS in the early 1990s. My father's own experience was quoted:

"John had been getting increasingly psychotic, deluded and agitated during the previous few weeks. He has been ill for five years since his first attack as an undergraduate at Cambridge. He had always lived with us since then and we recognised the signs that he was going downhill fast. But our GP told us there was a waiting list for beds, and the psychiatrist said he was not ill enough yet. Over Christmas, he was driving us up the wall. He was very trying. Then on New Year's Day, he got really psychotic. I lost my temper and forced the system. I physically ejected my own son from the house and told him to go to the police. I knew they could make the hospital admit him .......I feel terribly guilty about the whole thing, having to use coercion, putting the police and the hospital on the spot, but we were desperate. I may have been doing a more deserving patient out of a bed. One should not have to descend into this wheeling and dealing."

The psychiatrist was not best pleased to find my brother occupying one of his beds, but he got the message: carers have their limits too.

In his twenties, John would wander the house at night while playing loud music. This drove my parents to submit an application to install a small mobile home (including bedroom) in the garden. At first, the local authorities showed resistance until a supportive psychiatrist reminded them that it would be their budget bearing the cost of John's care if nothing was done to help his carers at a time of stress and strain. The mobile home was duly approved and installed, enabling my parents to get undisturbed sleep. It was also supposed to be a step towards John living independently, but that never happened. The severity of his illness left him reliant on my parents for his everyday needs. 

As years passed, John became outwardly calmer, but the negative symptoms of his illness persisted. He became depressed and fearful for a future without the care, support and reassurances of his ageing parents, now with health issues of their own. A neighbour described him as a  “gentle soul trying to live in a complicated world.”

Only with the increasing frailty of my parents, and my consequent greater involvement did I come to appreciate how much my brother depended on them for every aspect of his life. For many years, his medication alone required a visit to hospital every four weeks for a blood test and a return trip to collect the controlled drugs.  At the same time, my parents had to navigate the tortuous benefits system to ensure he received the financial support to which he was entitled. 

My parents were unstinting in their care, providing a safe and loving environment. As carers, they were no different to others in their position, catapulted into an unfamiliar and unwelcome landscape; but like so many others they accepted it and strove to do their best by their son right to the end. I know my brother for all his illness felt loved and protected by them.

We would like to thank Andrew for sharing his story, and for the legacy donation his father made in order to support our vital work. 

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