Widower and former sergeant major in the British Army, Steven Stevenson, talks to City Matters about the struggles he faced when caring for his wife.
Any parent will tell you that having a child changes your life forever. There’s an ocean of books, documentaries, podcasts and get-togethers to help us muddle through parenthood at every stage.
But what’s out there to prepare you for doing that all over again, in old age – when you’re suddenly the full-time carer for your husband or wife? A widower and former sergeant major in the British Army, Steven Stevenson spent years caring for his wife, Lee, as her Alzheimer’s got steadily worse.
Now the 77-year-old poses the question: Why didn’t anyone teach me how to become a carer?
“I took care of my wife for nine years before she died,” he said.
“I made more mistakes along the way than I probably even realise.
“The truth is, no one teaches you how to be a carer for your partner, but we should be taught.
“Professional carers only earn the minimum wage, but think how much training they’re given.”
Mr Stevenson has lived alone in the couple’s old central London flat since her death five years ago, aged 72. Both originally from Ireland, they met in London when they were young.
He found it “heartbreaking” seeing his wife’s gradual decline, from living independently and working on the shop floor of the Oxford Street John Lewis, to eventually needing to move to a care home.
“Towards the end it was like looking after a 70-year-old baby,” he said. “That’s what Alzheimer’s does to you.
“When incontinence set in, I was taking her to the loo two or three times a night. So I was getting just five hours’ sleep.
“You need mental preparation before becoming a carer. At 4am, when you’ve changed your partner’s sheet for the fourth time, your temper is very short.
“I mentally and physically broke down two times, in 2011 and 2012. Sometimes I shouted at Lee.
“I was a good carer, but not always. I don’t know anyone who was.”
With a touch of self-deprecation, he added: “One of the worst things was working out what the hell we were going to eat. How women do so much shopping still amazes me.
“For many men of my age they’ve never had to care for someone before. They weren’t the ones looking after the babies.
“They never learnt to cook or clean. So many of them are thrown into this position for the first time.”
He says compared to some men of his generation, he was “lucky”. “I was a squaddie, the Army taught me how to look after myself.”
He added: “You need to be taught how to clean, otherwise germs will gather in your house, and some illness will take your partner’s life quicker than what they already have.
“Even my daughter’s partner is 50, and he can only cook beans on toast. Imagine teaching yourself to cook when you’re 80.”
Not long after Lee’s diagnosis, the couple started going to a Carers’ Forum run by the City of London Corporation – a group for dementia sufferers and their carers that meets every fortnight.
He said: “Everything I learnt about caring for my wife, I learnt from other people who cared for their husbands and wives.
“Everyone in the group was at different stages. So people could offer tips.
“At one of these carer groups, one bloke put his hand up and asked: ‘How do I put a bra on?’
“It sounds funny now, because everyone knows how to take one off. But imagine how he must have felt.”
Offering some examples of his own, Mr Stevenson said he wishes he’d been taught “the difference between a bed sore and a scratch.”
And, “how to change a bed sheet without getting Lee out of bed.”
“Professional carers could change my wife’s sheets in two minutes. Think how long it would take for someone who’s never done it before,” he said.
It’s no secret that the country faces a major dilemma over caring for the elderly. Hiring your own professional carer can cost £22 per hour in London, Mr Stevenson says. And anyone with more than £13,000 to their name has to pay some money towards their care costs. The amount you pay increases the more you have saved.
Anyone with more than £23,250 in assets – including the value of their home – has to pay the full cost of their care. It means many elderly people are spending their life savings on being looked after, and even selling their homes to pay for it. Meanwhile, Britain’s cash-strapped councils struggle to find the money or staff to care for the elderly who aren’t so well off.
“I think if you give non-professional carers the training to do a lot of the basics, you won’t need professional carers so much, so the whole system won’t have to spend so much money on them. It’s a no brainer for me,” he said.
Unlike hundreds of thousands of UK pensioners, Mr Stevenson makes this point from a relatively privileged position.
He’s a former councillor within the City of London Corporation, which operates as the council for the affluent Square Mile, where the residential population is only 9,000 – about the size of Glastonbury village.
What’s more, he’s a member of the CoL’s Social Care Scrutiny Committee – a group of senior officers, politicians and residents who meet to discuss how the care system works, or in some cases doesn’t work, for the city’s residents.
In other words, he can speak truth to power, and sometimes they will listen. At a committee meeting in July , Mr Stevenson pitched the idea that the CoL should provide free training for local people who care day-and-night for their loved ones.
Many of whom, particularly in his generation, are thrust into this new lifestyle woefully unprepared, and in tragic circumstances. The reaction from his colleagues surprised him – but pleasantly so. Senior officers from CoL’s social care department offered to look into the idea and report back to him.
“You’ve got to pick your battles with them,” Mr Stevenson said.
A City of London Corporation spokesperson said: “Carers play a vital role in the support of people with care needs.
“We are investing in a range of services to support those who provide care – including a dedicated carer’s co-ordinator who identifies and supports the needs of those with caring responsibilities.”