It was the cheese that settled it. Until then I’d made all sorts of excuses. “They’re just getting old.” “They’ve never been the most organised of people.” “Everyone has the odd mood-swing.” “If only they actually wore the bloody hearing aid!” You know the kind of thing. But when you open the fridge and find fifteen unopened blocks of cheddar, as many of them green and mouldy as fresh and yellow, then you know there’s a problem.
And when you open the kitchen cupboards and find them fit to bursting with pack after pack of paper towels and precious little else, you wonder how on earth you hadn’t realised just how bad things had become.
In reality, the reason is pretty simple. Dementia, as Hemingway observed of bankruptcy, happens “gradually and then suddenly.” And it’s all the more difficult to notice in someone you love because, subconsciously, you can’t bear to think of it happening to them – and, if you’re brutally honest with yourself – to you.
It’s harder still to acknowledge that your Mum really is losing it when it means that, even with carers coming in twice a day, she can no longer look after your Dad, whose multiple sclerosis has left him less and less able to look after himself.
So you try to avoid the inevitable. They’ll manage. Both you and the carers can pop round more often. You organise meals on wheels.
But it’s no good. Dad tells you Mum’s insisting they eat dinner only a couple of hours after they’ve eaten lunch. And anyway, she’s leaving the plastic lids on the plates when she puts them in the hot oven. She’s found wandering in the street by a stranger. She’s ringing you in the early hours of the morning to ask, of all things, how the dog’s doing. She’s not changing her clothes, not taking a shower. He falls out of his wheelchair and can’t get up. But, instead of phoning for an ambulance, she lies down beside him for a few hours before finally calling you. He goes into hospital – yet again. You go round to check on her and realise she’s slept in her clothes, that she’s running a fever, and worse – much worse. So you take her down to A&E where they ask her some standard questions, and she tells them she’s got lots more children than she’s ever really had, and that the year she was born is actually today’s date.
So now they’re both in hospital – the same hospital, in different wards – but discharge is soon looming. They clearly can’t go home, though. So you’ve got no choice.
You find a nursing home. It comes highly recommended. Which is lucky because it’s literally the only place locally where they can actually stay together. You know it’s going to cost a bomb, of course, but it is what it is. The only thing that really matters is that they’re safe and secure and not separated, right?
Right. But also wrong, obviously. Social care – especially residential nursing care – is expensive. And when it’s for two people rather than one, it’s phenomenally expensive. Certainly more expensive than anyone who hasn’t ever had to think about paying for it probably imagines. True, the cost varies – partly according to the level of care, partly according to the quality of that care, and partly according to where you live. But – whatever – it doesn’t come cheap.
Before my Dad died last summer (not of Covid-19, although that impacted hugely, of course, on the manner of his passing) his care costs were getting on for £9,000 per month. For my Mum, who, just before Dad died, had to move to the secure, specialist dementia-care facility on the top floor, it now costs around £8,500 per month – although, I hereby confess that around a hundred quid of that (that is, just over 1 per cent of the total) goes on “luxuries” like getting her hair or her toenails done and getting the newspaper every day (even if she did inform me a couple of weeks back that it must be her own mum – who passed away over 25 years ago, mind – who sends those in).
In both cases, there was and is some contribution from the state, but it’s not huge. In Mum’s case, for instance, the NHS contributes just over £800 a month – slightly less than 10 per cent of the cost – which goes straight to the nursing home. The Department for Work and Pensions also provides just under £390 “attendance allowance” (a benefit for elderly and disabled people who need assistance). Overall, then, over 85 per cent of the cost has to be covered from her own pocket.
When the commission led by Andrew Dilnot reported in 2011, it recommended a cap be placed on the amount that anyone should have to pay for social care over their lifetime of somewhere between £25,000 and £50,000. When the Cameron government legislated, however, that cap was set at £72,000.
My Dad, then, would have reached that ceiling in under a year; my Mum in maybe a year-and-a-half. At which point, the welfare state should have swept in to pick up the tab. Except, of course, that it didn’t, and it hasn’t. The Cameron government’s legislation was never actually implemented, since, without a massive injection of funds from Whitehall, it would rapidly have bankrupted councils up and down the country.
Instead, most recipients of long-term social care in Britain rely not on cradle-to-grave but on “asset-based” welfare – using the wealth accumulated in their working lives to pay for what they need when they get old and sick. Shorn of that euphemism, this means – for most of us anyway – flogging the house that you always hoped you’d be passing on to your family.
On the upside, this system (if it can really be called a system) can at least make a claim to be progressive – a sort of pre-emptive inheritance tax, paid by the living. All your assets can be taken into consideration when calculating your contribution to your own social care, until they dwindle to £23,250 – the point at which English local authorities do begin to pay for care.
On the downside, it’s essentially Russian roulette – with many of the biggest losers coming from the normally sharp-elbowed, middle-aged, middle classes who find that, depending upon their circumstances, their families are paying huge sums by equity release or other, often desperate, measures.
Yet in spite of that, there remains relatively little electoral pressure on the government to overcome its predictable concerns about post-pandemic public finances, as well as its equally understandable fear of being seen to be proposing another “dementia tax” (as Theresa May was during her disastrous 2017 general election campaign). Boris Johnson promised on his very first day in office to “fix the crisis in social care once and for all” but is not (for now) facing a public outcry to deliver the goods.
Why? The answer surely lies, at least in part, in what neuroscientists call “optimism bias”: the conviction, apparently hard-wired into humans, that encourages us to move onward and upward rather than simply despair in the face of our inevitable demise; the strong feeling that things will be better (for our family and friends anyway) than all the statistics suggest. £8,500 a month? You could get a much better deal. Disability and dementia? They won’t happen to you – I mean, what are the chances?
Fairly high, as it turns out. Sadly, so is the correlation between realism and pessimism. The prime minister, of all people, being obliged by the great British public to keep this particular promise? Forgive me if I don’t hold my breath.
Photographs Getty Images
Tim Bale is professor of politics at Queen Mary, University of London.