“It’s like a prison in here,” says X, with a smile. It’s not really a joke. He eases himself back into his armchair and watches as we leave the flat he lives in, inside a care home in south London. X is my father in law, but I’m not writing his name because he is a private person, and privacy is one of the things being taken from him.
My son, my partner and I are leaving after our weekly visit. It’s a warm day, and we have just been down to the garden with X and Y (my mother in law). What X means to say is that it will be another week before he goes outside again.
It’s not always like that. If the pain’s not too bad and the weather’s not too bad, then sometimes X goes out during the week on his mobility scooter. It depends, too, whether or not someone is around to give him a hand transferring from armchair to wheelchair, down in the lift, into the scooter, through the keypad lock on the electric doors, and out onto the leafy road a quarter of a mile from the nearest shop. Every time he goes out he buys a magazine for our son and a bunch of flowers for his wife.
‘Take care,’ we say to friends and colleagues when we’re parting in the street, or when we want to get off the phone. It’s a phrase that has come to mean the end of a transaction, the termination of responsibility. ‘Take care.’ But care isn’t something you take. It’s something you give; or it’s something you’re given. The colloquial ‘take care of yourself’ means ‘I’m not taking care of you.’ ‘Take care,’ means, ‘you are alone.’
“I take a lot more risks since starting this job,” says the General Manager of the care home, with a smile. It’s not really a joke. We are sitting in her cramped office, talking through options for X, who has one set of care needs, and Y, who has another. What she means to say is that she’d rather die young than grow old like the people in her care. It’s the second time she’s said these words to me, so I ask her what brought her to this job. Her face grows wide with a smile. It’s her daughter. Her daughter is a classical musician, studying in London. The General Manager of the care home follows her daughter round the world.
Care is a type of relation. It is something that you give and something you are given. It’s reciprocal. ‘What a burden’ we say to friends and colleagues who mention the other bodies that depend on their own. But caring for people you love is not a burden. It is nourishing. It is nourishing like the sight of six yellow roses standing upright in a green vase, given and received between a couple who met as teenagers and have been married since the days before a man landed on the moon.
During the two years my parents-in-law have been living inside the care home they have never been billed correctly. Each month, six or ten invoices arrive for itemised costs amounting to upwards of £6,000. Sometimes they get charged VAT on the VAT already listed. Sometimes they get charged for meals they haven’t eaten. Sometimes they get charged for things that happened six months ago and that they don’t remember. The care home is a private company that encourages its elderly residents to pay by direct debit. Each time I query a bill I am asked when we will set up the direct debit. When you send us correct bills, I say. Nothing changes. This has become our routine.
Care is not a transaction, but a value. Care is not like money, although it costs money. It costs a surprising amount of money: six thousand pounds a month, for example, for a proscribed number of hours per week in a policy of care provision that cannot (according to company policy) be shared with the people who pay for it. And neither can the money, it seems, be shared with the people who carry out the care. The average pay of a carer in London works out at £10.41 per hour. The Living Wage foundation says the minimum you need to earn to live in this city is £10.55 per hour.
I am walking down the hill with my son, tears streaming down my face. My son, who is three or four, I can’t remember now, envelops me in a fierce hug. My throat makes an unfamiliar sound. “I’m sorry,” I say, trying to swallow the emotion. “Nothing’s wrong. It’s just very sad …” By now I have picked up my son and we are walking together, a moving hug. We have just come from visiting Y, while X is in hospital. She didn’t recognise my son: her grandson. He noticed, but he took it in his stride. He sang a song with her and helped me push her wheelchair to the dining room.
Carers are paid less than they need to take care of themselves. For the care home owners, the money received in fees far exceeds the money paid out in care. This money exceeds this care, and this money diminishes it. If this money is not spent on carers, then where does it go? If this money is not spent on carers, then what is cost, and what is care? If this money is not spent on carers, then where is care being held, who is caring for it, in whose hands is care?
I didn’t want to say goodbye to Y. The words fizzed and disappeared on my tongue.
Care is not the task but the performance of it. Care is straight spined roses when you know what it takes to buy them, a song when it’s the last thing you have in common, a child wrapping his arms around his mother.
One Sunday afternoon a carer calls to let us know that X and Y have run out of medicine. With no warning, the care home has stopped picking up prescriptions. In future, the care home will only pick up prescriptions for residents in their nursing wing, which costs an extra £6,000 a month. The phone call comes from the carer who looks after X and Y every day. She feeds Y meals, careful spoonful by careful spoonful. She smiles a lot. She modulates her voice, softly, and at just the right times. Last Christmas Day she wore a flashing LED badge on her uniform and handed out mince pies. My son said the badge looked like a fire engine. She gave it to him.
The company that owns the care home is currently up for sale.“Its attraction to a potential buyer,” writes the Press Association, in articles syndicated and reprinted around the world, “likely to be a private equity firm, is the fact that Z’s primary focus is on privately paying residents.” I am not going to write down Z’s name, because X and Y are privately paying residents, and we are scared of what will happen to them if we complain. If X and Y are assets, then they’re only valuable while they generate a return; they’re only valuable while they don’t put off other potential assets from generating a return, either.
Care is not a transaction, but a value. A value that is worth more than the goods and services being exchanged. Care is modulating your voice.
‘At least they have you to care for them’, is what friends and colleagues say when I retell the saga of X and Y in the care home. They mean there must be other vulnerable people inside privately run care homes who don’t have an advocate on the outside. But this work we do, this administrative battling, this steady checking and rechecking, this rippling anger at a cold system run for cold profit, is not care. It is care diminished by money. It is the least we can do.
One day my partner comes home from visiting his parents, as pale as a ghost. His hands are shaking. He tells me that the care home administrator followed him round, waving a stuffed toy with the words ‘Debt Dog’ emblazoned on it. We have to pay now, he says. If we don’t, they will stop giving Y medication, he says. They will stop taking her medicine out of the cabinet and placing it in her frail hands. That is what they have said. They are demanding £20,000. Twenty thousand pounds. But we don’t have any invoices, I say. They will stop giving Y medication, he says. So I pay it anyway. The money comes from the sale of X and Y’s home. It is a finite amount, and it is dwindling. It takes six months for the care home to tell us what we paid for, and to allocate the money to the correct account.
If this money is not spent on carers, then carers are cheap, so caring is cheap, so how do you explain the value of care?
“It is thought that several buyers have already expressed an interest,” say the press reports, about the sale of the company, “but only offers higher than £2.5 billion are being taken seriously.” In this equation, privately paying residents means people who can be exploited for profit. It does not mean people who will be cared for, and it does not mean care. It does not mean value, it means exchange. And it does not mean fair exchange; it means money.
When my partner said he wanted to give up work to spend time with his parents I didn’t understand. We already work around childcare. We already visit once a week. How would we survive with an extra drop in income? Then he described to me how it felt to be with his parents. To watch TV with them. To read with them. To make up silly jokes with them. It is not a burden to care for the people we love. It is not a financial transaction.
Care is not like money.
But money is the language that care speaks, in the body of a private company. This language pretends to be rational. This language pretends to be clinical. This language pretends to be about services received and goods paid for. Sometimes money is where the ruptures in a system flash on and off like a warning, or a gift.
I am on the phone to the General Manager of the care home while my son plays noisily in the flat above ours. At the same time, my partner’s phone rings. It’s a friend, who went to visit X and found him on the floor, unconscious. After his prescription was not renewed in time, X has been without pain medication for four days. There is no financial transaction to stop this happening. By which I mean: there is no amount of money in the world that would be too much to stop this happening. And also: there are large amounts of money being passed from two vulnerable people (‘privately paying residents’) to a private company (‘likely a private equity fund’) in the name of ‘care’ (profit). And it is not enough to stop this happening.