I’m getting increasingly frightened of growing older. It would be fine if I could remain fairly healthy, ambulant and in possession of all my marbles, but not if I’m bedridden, incontinent and demented. I’ve been sounding out my chums to see if any of them might be willing to smother me, if I end up in such a state. Because a) I don’t want to live like that, b) I don’t want my daughter having to look after me, and c) I don’t want to end up in a “care” home, frittering away any money I have left.
Perhaps it would be worth it if care homes were heaven and worth the money, but hardly any of them are. (Less than 1% of them in England were rated as “outstanding” by the Care Quality Commission). As my mother said when she moved in with us 10 years before her death, “Why pay £500 a week to be miserable, when I can be miserable here for free?”
Why indeed? And it’s nearer £1,000 a week now, to lie perhaps mouldering in nappies, surrounded by strangers, and possibly being fed on slop, with my daughter and chums dragging in and out bravely visiting, perhaps for years, while any funds I could have left behind to make their lives easier go zooming down the drain.
I’d much rather die. Perhaps I’ll chicken out nearer the time, but that’s what I feel like now, aged 74, as do many acquaintances of around my age, so it comes as no surprise that increasing numbers of ageing parents – half a million over the last two years – have created powers of attorney, to make sure they can refuse treatment when their illness becomes incapacitating. Primarily they do not want to “live on in unremitting pain or with any other poor quality of life”, but neither do they want the costs of care to gobble up their remaining assets.
Of course these people and their children are the lucky ones. They have something to leave, and they are now perhaps more desperate to leave it, even if it’s a small amount, because they know that without financial help from them, their children will probably find it impossible to own a home, or even rent one. House prices are astronomical, average £217,000 in the UK, and much more in London, where housing costs can be 14 times the average earnings. UK tenants often spend half their pay on rent, more than any other country in Europe.
Parents are meant to help and support their children, not become an intolerable burden upon them, especially when they’re struggling with such costs and often insecure and low-paid jobs. I was able to look after my mother because we had a secure home, she had her wits about her until the end, and never became incontinent. Perhaps I could have managed all that, but she didn’t want me to have to. She dreaded, above all things, that I might have to wipe her bum.
“I’m a bloody nuisance,” she would cry repeatedly, when all I was doing was feeding her and driving her about. Carers came in twice a week to help with baths, we paid the organisation that provided them, but even then the carers, always cheerful, kind and endlessly patient, were poorly paid, and not paid at all for the time they spent travelling between clients. In her last couple of years, incapacitated after her stroke, my mother had excellent free care, a special adjustable bed, hoist, rails, and commode, but the cries of “I’m a bloody nuisance! I want to die!”, became more frequent. Finally liver cancer finished her off, and in those final weeks we had the most wonderful carers twice daily, in pairs, morning and evening.
Those carers deserved much more than the minimum wage. Their skills were worth a fortune. But I cannot imagine that we would receive that much help now, with the current crisis in social care: funding for it cut by up to 30%, an increasing elderly population, ever more stingy home care, care providers and many care homes closing down, apparently unable to afford the cost of even the minimum wage for staff.
Heaven knows how people now manage without anything like the support we had. And the less help you have, the more frazzled, worn out, desperate and probably crabby you get, and the more burdensome your old parent will feel. No wonder many of them are heading for the lawyers, frightened more than anything, of dementia.
On the positive side, a new £250m dementia research institute is to be set up at UCL, and about time too, seeing as neuro-degenerative illnesses are going to become the key diseases of the 21st century. But any cures or improved treatments will be too late for my peers and our children. Which is perhaps why some of us are so desperate to sort out our affairs and our own demise, before serious degeneration and the Grim Reaper finally arrive.
