Frozen in an eternal now – the agony of being a carer

Filing papers, picking apples.

There were two things – one big and one small – that I’d never managed to get done in all the years I’d lived here, in the quiet of a small valley running down towards the River Wye. Two boring jobs that were neither urgent, nor important. One, filing a mountain of old reports, hospital letters and emails. The other, a race to get the apples in before the squirrels got them or they fell rotting to the ground.

I’d avoided the paper sorting task because every paper, every email, every report of my daughter’s contact with the mental health system was evidence of failure. The system’s failure to offer help or support, other than ‘antipsychotics’ she would not take. My failure to get her back into her life, to protect her from hospital admissions and being drugged until she was numb.  The massive volume of these disordered documents offered their own, sullen resistance to being filed. Each time I’d tried, they spawned duplicates or shuffled themselves into even more meaningless, out of sync disorder. 

“February 2019, From Community Mental Health Team, X is doing well, she’s back at college and hopes to apply to university for next year. She says she will try to stop smoking marijuana, says she doesn’t know why she does it, but knows that using it was the reason she was admitted to hospital. She wants to stop taking her medication monthly as a depot injection and change to pills. She would like to have more control over her medication, but we advise staying on the depot for a few more months. Her friend Leonard is visiting. Her mother is happy for her to live at home and support her.”

Leonard. I had almost managed to forget him. The short guy from Paris with ill fitting clothes, limp and grey from overwashing. His lank, thinning hair was long like an old rocker’s, compensating for a receding hairline. There was an edge of goading antagonism to him, one directed at me, with every rolled ‘r’ and each slowly translated word. This was the guy that she’d run away to Paris with, only days after the meeting with her psychiatrist. Leonard. The boyfriend who abused her, locked her out of his apartment and left her, raging, despairing and psychotic, on the street out in the banlieue. She was picked up that night by a stranger, a man who, thank god, was kind. Knowing she was in serious trouble, eventually she managed to call home. Of course, I dropped everything and went to help her.

It was harrowing. One long and expensive taxi ride to a distant and decrepit A&E, two missed flights, and one night spent sleeping in the Yotel in Charles De Gaulle – safe behind security,  until eventually we boarded a flight and made it back from Paris. A kind friend picked us up at the airport. She dropped me home so I could catch some rest, and took my daughter straight in to see the community psychiatrist before she headed back to work. The British Consulate in Paris had phoned ahead and told them to expect her. But as one brief paragraph in my ensuing complaint noted, the community mental health team turned out to be too busy for this drama. The psychiatrist was not available, the nurses were all busy, the receptionist told her to wait – leaving her to wander off into the city.

Reading that short and factual page, knowing how many people were involved to get my daughter home, makes one short breath after another catch in my throat which is now squeezing tight to stop a flood of tears. My mouth has gone dry and my heart clenches, hard and desperate, ready to beat out my old anxiety hard and relentless into the night.

But I stop myself. I remind myself  that it all happened years ago now, and I’m only reading a letter. I look up and remember to bring myself back into this room. It’s warm and familiar, there’s a cat sleeping on the rug, a houseplant wilting for want of water. Nothing is happening and I am safe. I let the moment lengthen. My heart slows. The old panic softens as I move these memories and the papers that carry them, from my hand to the file where they belong, 2019.

I keep going, more letters, more reports, 2022, 2021, 2020… I only look at the dates now, not wanting or willing to face their contents.

Over the years, each new crisis and each hospital stay has merged one into another in my mind, like the mess of papers in boxes.  All my feelings of fear, anger, despair, outrage and grief are petrified in each printed page, all laid down like fossils beneath the layers of my angry complaints and endless concerns. This is why I’ve been deaf to them nagging at me from the yellow lever arch files. Why I’ve left the archive boxes with their ill fitting lids, piled at the bottom of the bookcase and pushed away under the stairs. I’ve not wanted to lift the lids and let those furies out.

Only now, when she’s living in a rehab unit in another town and still held under the Mental Health Act, can I face my avoidant, trauma ridden procrastination. So I sit down to do the job. The one I don’t want to do.

Another long stay behind locked doors it’s not what I’d wanted or hoped for her this time. I thought she’d be coming home, but the team wouldn’t hear of it.  I wonder if another parent would be relieved? Instead I’m caught up in endless worry about the increasing drug doses and her decreasing freedom, and again I feel powerless to put things right for her.

But now my worries are not simply for her survival, they’re more complicated. I’m ill from Covid, it’s left me exhausted and unable to work. My health no doubt worsened by the ‘caregiver burnout’ from a nervous system stuck in fight, flight or freeze for all these years. I had to admit to myself that I couldn’t have her home, not without considerable support, and even then it would be hard. But getting direct payments funded from a council’s social services budget without the backing of her team is about as realistic as relocating to the moon. Feeling cornered, I’d fought for something better than their ‘preferred provider’ for Level 2 rehabilitation, found what seemed to be a good place and managed to get it funded. Even so, I felt guilty knowing she’d be in a strange city, on another ward, being fed a cocktail of drugs and meals of jacket potato with tuna. Somewhere she would be expected to make friends with people she wouldn’t have anything in common with, apart from a diagnosis. And so I find myself consulting Youtube astrology channels late at night, hoping that there’s some conjunction with the moon or some final plutonian transit that validates this lessening of responsibility, this off loading of mothering to explain the shift in my life and hers. Is my karma all spent, is my job done? Do I have permission to rest?

I punch holes in another mental health tribunal report, clip the pages together and put them into a dated file. The shredder is eating up the duplicates and throwing out dust onto the rug. The past ten years’ paper trail of adventures into and out of altered states of mind are being forced into order, stripped of the drama that went with them.

Like the time she disappeared to London taking with her a wind-up alarm clock, the Wilhelm translation of the I Ching, a pyramid paperweight and a fraying length of pale yellow silk in my grandfather’s old leather overnight case. All of them filled with meaning, but not a coat or a phone charger, bank card or money for a hotel. I can’t remember how she got home that time, if a friend got her to a train, or if it was the police again. Or the time she went to Oxford. The priest who’d found her weeping at a bus stop, long after the buses finished for the night. Not knowing quite what to do, he paid for a hotel room and food, then persuaded her to give him my number. He called at 2am. But I couldn’t get there quickly enough, by the morning she was already in the assessment suite at the Warnford Hospital.

As the files fill, I see how all these mad and dangerous adventures, with all of the precious meaning they had for her, get boiled down into management speak. She’s just another case. Just another risk to be managed. The bleak and dispassionate clinical diagnosis, the treatment plans and the over-optimistic discharge plans, devoid of substance or funding or simply left blank. So many words and so little responsibility, care or compassion. So many words that say nothing about her at all, apart from labelling her sick.

Life lived in and around psychiatric units is a life lived outside of time. Birthdays and Christmases pass without celebration. Nobody ages, we’re all frozen in an eternal now, all waiting for ‘after’. The experiences that should be building an independent adult have been lost to airlocked doors and unbreakable plastic cups. For me, these were years when work was just getting exciting, a time of competence and confidence. Before I knew it they were cut short. I said I would wait for things to get easier.

Now, for the first time in years, I’ve noticed each summer day slowly cooling. Autumn sneaking in on the breeze, claiming the last few fine days. How the apples are weighing the branches down as they ripen to red on the gnarled old tree.

I’m working to a different rhythm, one that lets me win the race against the squirrels to gather the harvest. I have a bounty of apples, bright waxy skins unscarred by their nibbling, or discoloured with the white spots of rot on browning bruises. Too many to eat so they’re stored in the larder in boxes. It seems my next boring job will be the job of peeling and coring, before preserving and freezing. A small job, neither urgent nor important, but one I know is already waiting.

A simpler life seems to have returned, at least for now. The house is quiet and my mind is finding peace, despite boredom and a deep, tugging grief. I’m living what most people would call a normal life. But for me it’s not normal, it’s an unexpected pause between what’s already happened and what’s yet to come. If these slow and unsurprising days are what normal feels like then I’ll take them. And get on with doing the boring jobs, filing papers, picking apples.

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Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.