
DESPAIR …..
I have lived with Serious Mental Illness in my family for 50 years ….. it’s so hard.
Can you imagine how it feels to love someone whose behaviour is unpredictable and appears to be irrational? Perhaps you know exactly what it’s like. Perhaps not. But believe me, it’s really hard.
My sister has struggled with schizophrenia throughout my adult life, and her illness always dominated our lives. My parents died worrying about who would love her and be her rock when they were gone. That’s why I set up Hammersley Homes – to provide support for life for these vulnerable adults, for whom only temporary support seemed to be available, and even that was very hard to access. According to NICE, there are over half a million people in the UK registered with a Serious Mental Illness (SMI) – and it’s estimated that at least as many again are unregistered, either living with their families, homeless or in prison.
Living with a loved one who has an enduring SMI, that includes psychotic episodes, paranoia and delusions, is incredibly difficult. It’s impossibly hard to know where to go to for help, especially in the early days when it all seems unbelievable and unfamiliar.
The person we love is changing … will they recover? Is this temporary? What should we do? Who can help? We may receive all sorts of advice from different quarters, and have no idea who is right – most people seem not at all to understand. They say “don’t worry, they will grow out of it” or “well just be firm, tell them it’s just not OK to behave like that”. “Lay down some boundaries – be strict.” But that’s not understanding that it’s an illness that needs care, treatment and attention – it’s not their fault. And I think it’s really important to remember not to lay blame, but it’s not easy.
Some thoughts and things I’ve learned on my journey:
- Learn as much as you can about the illness or condition – the more you know, the better you’ll understand and be able to help.
- Listen and try to empathise. That’s hard, but makes a difference if they can feel they are being listened to and not argued with.
- Build trust by listening and agreeing. You don’t have to agree with paranoid delusions, but try to have a conversation about it, rather than arguing. Try to understand what’s going on in their head. Their reality is every bit as real to them as ours is to us, but it’s a different reality – it can help to try to understand it.
- If the diagnosis is schizophrenia, try not to say they are “schizophrenic” but rather that they have schizophrenia. Recognising that this is an illness that they have, somehow makes it easier to remember the person we love is still in there and should not be identified by their illness. We don’t do this with physical illnesses do we, so why would we do it with mental illnesses?
- I often wonder why it is that we tend to go along with the delusions of dementia, because we know that if we argue it causes upset; but we do tend to argue with the delusions of psychosis – and it causes upset and leads to fights.
- Read some excellent books about these issues. Two that I highly recommend:
- I’m Not Ill, I Don’t Need Help – by Xavier Amador
- Sedated – by James Davies
- If you can, join a carer group – but specifically a mental illness carer group. Others on this same journey can offer helpful advice and will listen and sympathise without judgement. It’s good to spend some time with people who completely understand what you are going through – they are going through it too.
- Tell your GP of course – but the effectiveness of this depends on where you live, which is bonkers but it’s sadly true. If your loved one can be referred to a local Community Mental Health Team, and if they have a good psychiatrist who can recommend some sessions with a psychologist to start with, before resorting to medication, then great. Antipsychotic meds can be a good solution, but tend to have unpleasant side-effects. Talking therapies and compassionate support and treatment can be effective. But remember that everyone is different, and responds differently to a variety of approaches. Medication may be the answer for your loved one – or it may not. Ask questions, do some research.
I know in my own case, medications calm my sister and it has always been great for me and my family, great for her medics and her neighbours – we didn’t have to deal with her psychotic outbursts, they ceased …. but she hates it. She hates the side effects: the weight gain, the restlessness, the way the meds slow her down and take away the buzz her life used to have. She became lonely and found it hard to make friends. Sound familiar? I wish I’d asked more questions in the early days and had the understanding that I now have, and listened more, argued less.
My sister has been in hospital, on a mental health ward, more times than I can remember. She has been in trouble with the police – not because she has a criminal mind, she doesn’t. She’s kind, honest in her own way, caring and thoughtful. But she has broken the law sometimes, in the throes of a psychotic episode, and hasn’t understood why it was wrong. When this has happened, she’s been channelled through the Criminal Justice System – which I feel is so inappropriate and wrong. Our prisons are bursting at the seams, hideously over-crowded, with far too many mentally ill people locked up for apparently having an illness. Sometimes I think that the people who design these systems are more insane that those who live with mental illnesses. It’s so illogical. It’s treatment and care, understanding and help that’s needed – rather than punishment.
Our aim at Hammersley Homes is to provide long-term support for these vulnerable adults – for life. Building trust and confidence is so important. We want to offer them fully supported housing where they won’t feel lonely or isolated, they’ll be amongst friends with support on hand 24/7 when and as required – staff to notice when things are going wrong and can get medical or clinical help without having to wait for it. Mental illness is a very heavy burden on the public purse – there has recently been public money poured into crisis care …. But we don’t want the crises. Our goal at Hammersley Homes is to provide the support that avoids these crises – but we are a charity and we need support. Please consider a donation to help us reach our goal, or leave us a gift in your Will. Both we and the families of the vulnerable people who we support would be eternally grateful.