Bronwyn is a woman in her late seventies who has lost contact with her son after he was discharged from an ED without notification or post-release care plan. She recalls her resistance and exclusion complicated a difficult relationship with her son that broke down shortly before he was admitted into the ED.
Clive had his first episode when he was 17. I know now that 17 is an entirely ordinary age for someone to develop schizo-affective disorder but at the time it struck us completely out of the blue. We both quickly lost a lot of friends and support. The stigma around the illness filled the vacuum that the information we have now should have filled and it was devastating.
When we ended up needing to send him to hospital, I found I was getting bounced back and forth between the police and the hospital. Clive’s psychiatrist was cagey, as were the hospital staff, they treated me as part of the problem. Blame the mother was a common fall back for difficult cases in those days, I hope it isn’t now.
By 26 Clive was drifting between different squats, homeless shelters, hospitals and staying with me when he was safe to. His sisters wanted nothing to do with him and his father had left us some years beforehand. I was all he had, but the years of parent blaming and shutting us out of plans to help him had taken their toll. He was distrustful, paranoid, convinced that no one wanted to help him and people were keeping him unwell – he wasn’t completely wrong.
After an admission relating to overdose, he was admitted to [a hospital]. I knew he was there, I was with him when the ambulance arrived. A few days went past and I hadn’t heard anything from him or the hospital. I called one day and was told nothing. Called the next day and was told he had already been discharged. I asked where was he discharged to and was told that was confidential, that he didn’t want anyone to know and he didn’t take any medication with him.
I searched all his usual haunts but didn’t find him anywhere. I asked the people he knew, his social worker but they knew less than I did. That was in 1983. I haven’t seen him since. Very occasionally I’ll get a brief phone call from him – a couple of disassociated words and then the dial tone. More likely from someone else trying to chase me for a bill, because that seems to be the only time anyone seemed to care about including family was when there was money to be had.
I had to fight for every support and every inch of recognition I could get, but even that wasn’t enough. I cannot fathom why a system that is supposed to help people fought so hard against someone’s vital supporter and advocate. All I can hope is that we learn these lessons for those living through that stuff today. No one is an island, we all need help from time to time and our health systems should be that support, not the cause of more suffering and loss.
* Names and places have been changed to protect individuals.
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