This piece recounts an earlier point in my journey through the mental health system with my daughter. It was my first experience of a so-called carer support group.

 

Coffee, No Sympathy

My daughter was just 18 when she had her first admission to hospital, cutting short her last year at school. There’ve been 12 more hospital admissions since then, each precipitated by a terrifying crisis. Each one could have been avoided if we’d had any kind of meaningful aftercare at home.

Over the years my dogged belief in my daughter’s path back to independence and purpose has been eroded from a rock-solid belief, to dust. So too my trust in the treatment offered by NHS mental health services.

The first time she was in hospital it was only a week before she was home again. Her estranged dad, living hundreds of miles away, had been incorrectly given the legal rights of the Nearest Relative. Never mind that she’d never lived with him. They’d phoned him. He’d said he didn’t want his daughter in hospital and so she walked off the ward, got on a bus and came home.

Of course, it wasn’t long before she was in crisis again. This was to become a predictable pattern that would repeat over the years. Crises that left me, my family and my neighbours traumatised. Hospital stays that didn’t really help. And all too rapid discharges from hospital stays by teams that needed the bed and assumed I could keep her well at home without any backup or support.

It wasn’t until the third or fourth admission that eventually I was offered a Carers Assessment. I didn’t really see myself as a carer, more as my unlucky daughter’s exhausted mother, but at the same time I found myself confused by all that had happened – and all that had not happened. By this time I’d learnt my new role of ‘caregiving’ was brutal in its 24/7 demands. Nobody offered me help and nobody asked if I could manage.

Finally, I thought a carer’s assessment would deliver the help that would put an end to the chaos and confusion at home. I had learnt enough since that first admission to know I needed skills I didn’t have. This was nothing like parenting a difficult teen – it was managing psychosis without a map. I naively believed that at last help would come. I knew what I needed and it wasn’t sympathy.

The assessment turned out to be a form from the council. It was filled in for me in blue biro by a woman called Julie. Julie was my allocated family support worker from a charity that worked with people with mental illness. The charity promised Recovery with a recovery model that seemed to be more about disability and dependency than thriving.

Julie was quite mumsy in a Welsh way, with a broad Neath accent and a warm and familiar manner. She was older than me, her smile forced and puckered. She was ‘well put together’ but could not hide the shadows under her eyes and lines from a lifetime of stress.  Her hair was the hair of wishful thinking, dyed and blow dried. Her large soft body spilled over an elasticated waistband as soon as she sat down.

She was concerned enough to pat my hand when I told her how stressful it was to have my daughter at home. I told her how terrifying it was not knowing what was going to happen next. How my nerves were on edge trying to cope with the worry and sleeplessness.

Julie put her head to one side,

‘Are you under the doctor dear?’

This euphemism for antidepressants was followed by a sigh as she said,

‘Your daughter is very poorly you know.’

Not realising the assessment was little more than a formality, when Julie asked what I felt my needs were, I told her.

 I wanted skills so I could do a better job of keeping things steady. I wanted to know how to avoid coming to blows every time I came home to find all the electrical appliances unplugged, the freezer defrosting and towels draped over the mirrors and TV. I wanted help to prevent any more of the spontaneous train trips to London to deliver messages to the Houses of Parliament. I wanted to know how to be with someone in an altered state of mind and not be triggering or make things worse.  I wanted to know what on earth to do about the clouds of cannabis smoke that emanated from her bedroom.

More than anything, I wanted to know how to get some rest and keep going.

Julie was scribbling everything down carefully, head bowed in concentration over a black vinyl clip board. She didn’t think I could see, but her eyebrows were lifted, and her eyes were rolling. Occasionally she took a sly, sideways glance at her watch.

A silent speech bubble hung above Julie’s head,

‘We’ve got a right one here’.

She eventually put the hastily filled out pages of the assessment with the clipboard into her bag and bustled her way out of the door, wishing me well, promising to see me soon. I did see her again, but it wasn’t soon, it was months later.

Of all the things I’d asked for in that assessment, and all the things I hadn’t asked for, only one ever materialised. And that was a parent support group.

Despite ‘not being a joiner’ I wanted to appear willing, wanted to find out about all those difficult things I had to deal with. So, meeting others who were solving problems like mine if they hadn’t already solved them, had to be a good idea.

I managed to squeeze out a ‘Yes’ when she called to ask if I’d be interested.

Eventually a photocopied invitation with words spelled out in a large, jolly font and decorated with clip art of cake and cups and bunting fell onto the doormat. Come to a coffee morning, it said. So at 11am on the first Thursday morning of that month, I dutifully put on some lipstick, jumped on my bicycle and set off for the local arts centre.

I was still wet behind the ears in caregiving years and not yet ground down with bleak cynicism, but even so it was the most alarming event I had ever attended.

Tucked away in an alcove between the cinema doors and the men’s toilets, there was a small group of late middle-aged women sitting together next to a banner that said ‘Hafal – making lives better’(Hafal, meaning ‘equality’ in Welsh, was the name of the charity). Slightly to one side of the women were an elderly couple, sitting side by side, holding hands. They looked like they’d been there for a while and were making a day of it. They seemed happy enough and were chatting quietly to each other, stirring sugar into weak tea and smiling forlornly. On the next table was a younger, cheerful woman with a fixed smile and her coat on, who made it clear she could only stay for half an hour. Then there was a woman, closer to me in age, wearing smart-casual, looking exhausted but doing her best to be chatty.

I found myself not knowing where to sit, forcing a smile onto my own exhausted face, as I tried to figure out how to fit in and where. I went and sat on the plastic chair next to the smart-casual woman – she looked as though she could become a friend.

There was not much chat, and our introductions were not to ourselves, but to the diagnoses, difficulties and current challenges of our adult children. These introductions were given in more detail than I was expecting or could handle.

Smart-casual’s teenage daughter had got pregnant by another patient on the same psychiatric ward that my daughter had been on. The little one was now almost two and smart casual had become de facto mother to a toddler while supporting her delusional daughter and coping with her aggressive and paranoid boyfriend.

The ‘must-dash’ woman’s son had been discharged a year or so back, into supported living in a house ‘down the docks’. It seemed it was a living arrangement supported in name only, having instead become an important hub in the local drug trade.

‘How’s Luke doing?’ asked Julie brightly.

 Must-dash recounted how he’d been picked up by the police just the week before, running naked down Bute Street, screaming in terror at invisible assailants and narrowly missing a collision with the number seven bus during rush hour. Put on a Section 136 by the police he was now back in hospital.

The elderly couple emanated a deep sense of hopelessness. They told me they looked forward to these coffee mornings and how nice it was to talk to someone new. They cared for their 50-year-old son in the small house in Fairwater they’d lived all their lives.  He spent his days in his bedroom playing computer games, or at least that’s what they thought. His frail, white haired mother cooked him dinners and left them on a tray by the bedroom door because he wouldn’t leave the room. Occasionally she said, she managed to do his laundry, but they hardly ever exchanged a word.

‘But how would he cope without us?’ she asked me when I said how hard that must be, not wanting to say it looked like they would both be needing care themselves soon.

Comparing the gruesome details of injuries and illnesses is only interesting once you’re over 60. For me, not yet touching 50 and an unwilling recent initiate into the black hole of mental health, the details were terrifying.

‘I’m not a carer and my daughter isn’t going to be a patient,’ I thought clinging to hope,

‘She’s going to get better, she’ll get back to college and be OK, she’s not going to be like them.’

In my mind, my scholarship winning, creative and funny girl, had suffered a bit of a setback after a traumatic experience. Once we’d sorted that out with some good therapy and found the right medication, I’d get my daughter back to her old self again. I was not like these people, we had nothing in common.

Leaving my coffee to go cold on the sticky table, I made my excuses faster than must-dash, turned tail and bolted for the door.

Looking back, I see my terror at a future self I didn’t want to become, hitting me smack between the eyes. A future in which I could be any one of those women sharing stories and knowing they weren’t quite so alone, over their weak coffee and cheap biscuits. It was a future all those years ago, I refused to admit.

What I wanted was to be busy in my own life again, not managing my diary around my daughter’s community mental health team. I wanted to be running my business, commuting to London for meetings with colleagues, wearing Chi Mihara shoes and neat cashmere tees and talking about my holiday plans when I had my hair cut with Zoe at Toni and Guy. Hanging out and swapping trauma-tales over coffee was nowhere to be found in this reality.

Ten years later as I’m writing this, my daughter is now 28. She never made it back to college but, after being in hospital again, was now in a mental health rehabilitation unit. Reflecting on all that we’ve been through, the battles I’ve fought, the dreams I’ve abandoned and the hopes that still haunt me, I dread to admit who I’ve become. I’m the one who would scare the new person in the group. I’m the one who looks older than their years, who’s got exhausted eyes and an aura of despair. The one with stories of life and death recounted while struggling to suppress anger and frustration at the shocking failings of underfunded, crisis driven mental health services at breaking point.

I think back to smart-casual and how angry I feel for her. To know that the place of safety she signed her vulnerable daughter over to was not at all safe. How close I could have come to being the one who had to give up work and is driving a grandchild to their first day at ‘big school’, bracing myself for teenage years to come in motherhood round two. How close I came to becoming that woman left to doggedly soldier silently on?

I knew back then what I needed. It was learning how to communicate, to reduce conflict and reduce the risk of violence. Understanding of substance misuse. Assertiveness to hold firm, loving boundaries I could be confident in because I knew health services would have my back. And respite to give my body a chance to shed the stress and stay well.

I wanted meaningful support that would make a tangible and lasting difference to both my life and my daughter’s. I think back to that form. To the time wasted filling it in. To the false hope it gave me and all the trauma we’ve notched up since then despite my superhuman effort to keep my daughter well and out of harm’s way.

What nobody said that morning over coffee was how lives and our dreams had been shattered. How we were being used to fill in for poor services that failed us and our children over and over again. How we were worried about our kids, about holding onto our jobs and about getting older. How we were weighed down by the support our grown children needed, how our plans that we put on hold were never realised. How tired we were hiding the grief for our children’s lives, grief that no-one could see and that would never end.

Ill equipped as we were, we were carrying on because there was nothing else to do. Nobody was coming to our aid. We were the ‘care in the community’ for a skeletal health system that conveniently didn’t seem to care about us. Whatever anyone had written on our carers’ assessments, nobody was getting anything more than a monthly coffee morning with Julie, sitting at sticky tables at the back of a busy arts centre next to the gents.

But the coffee morning wasn’t the problem, and neither was Julie, despite her jobs-worth time checking, her platitudes and her roster of events that always had refreshments. The problem was that this was all the support we were given. And now, with services stripped to the bone, there isn’t even a coffee morning.