‘I haven’t had the time…..’ An excuse that tends to be seen as a lie, even if a white lie. There are 168 hours in a week, full-time work is supposed to take 40 hours or so, sleep maybe 45. Mmm, 83 hours left.

I haven’t had the time to work on ‘Empty Plates Tomorrow’ recently, which probably doesn’t matter to anyone who happens to read this, but it feels a failure to me. Well perhaps I should have had the time. Yesterday I went riding for an hour, today we had lunch in the pub. The issue may not be raw time, but uninterrupted time. I do not have uninterrupted time, except when asleep, and the 3am nightly visit of my father’s domiciliary carers interrupts that, not that I mind because he needs their attention.

Life as a main carer for my parents, both in their 90s, is no doubt similar to that of nearly six million people in the UK, 1.2 million of whom care for an elderly, ill or disabled person for more than 50 hours a week. One in five of the 45-64 age group is, like me, a carer (figures from Key Facts at www.carers.org). Millions of frail and incapacitated people need care, showing that rising longevity is not the same as a longer healthy life. I think the consequences of the rising need for care need to be considered in greater depth.

Public spending has to be slashed because of the UK’s debt mountain. There will be less money to care for the elderly and infirm, and this will increase the need for friends and family to devote time to caring. The alternative is for vulnerable people to go without care, to be forgotten, and to suffer. Strangely enough, as I write this, ‘Election Uncovered’ on Channel 4 is considering this very issue: less public money for care is indisputably possible.

Family and friends who care will have to cut out one or several aspects of their lives. First, discretionary time: fewer hours for holidays, meals out, sports, hobbies, leisure.

Next, caring time cannot also be used for paid work, so carers’ incomes decline. This means lower tax revenues, further damaging public finances. Welfare benefits for non-working carers and for the people they look after could be reduced, giving further force to the downward spiral. For those like me who can work at home a lot, the frequent interruptions mean that each task takes longer and longer to complete. Phone calls and visits from health professionals, the chiropodist, the mobile hairdresser, prescriptions to collect, medical supplies to order, pills to give, meals, drinks, entertainment, company, a care rota and back-up rota to organise, to ensure that a carer is present 24 hours a day, seven days a week. This is not a complaint, just an observation that people who are carers have to cut their other activities.

Why not rely on residential institutions? Standards of care are already woefully low in too many homes (remember the Gerry Robinson TV programmes on deficient dementia care?). Slashed public finances will mean worse care homes, except for the very few individuals who can afford to pay for private, personalised care. The decision whether to send an infirm person into an institution, or to support them at home, may exact a high price – from those admitted into institutional care, if standards are low, or from their carers if they have to stop work, stop pension contributions, and neglect their friends and other members of their family.

People who are recently retired have, for decades, been invaluable as volunteers in community organisations, also as elected councillors and as selected representatives on QUANGOs (definitions vary, but ‘quasi autonomous non governmental organisation’ is a popular one). A bonfire of QUANGOs might not have a detrimental impact on government, but community volunteers and councillors are extremely important to our nation. As more and more of the fit retired, as well as people under retirement age, need to care for ailing family members and friends, the pool of potential volunteers and representatives will shrink.

It may sound bigoted to the guardians of political correctness, but might it be a mistake to protect the NHS from cuts and to prune harder elsewhere to compensate? This policy could prolong the lives of people like me, but if we need long-term care as a result, who would benefit? Should the artificial extension of life be unquestioned as a top priority? It doesn’t appear to be a question that is asked in government, but I reckon that it needs to be both asked and seriously debated.

Home and Away

Monday September 13th 2010. Shirley Priest is at home in Newbury, Berkshire. Her friend Sylvia, looking exhausted, is sitting at the kitchen table, bringing Shirley up to date.

“I don’t know how we are going to cope, Shirley. Mike’s father Bert – do you remember he was widowed two years ago – well he was in The Hedges, quite good as dementia homes go, but a couple of weeks ago it just closed, no warning, nothing. There was nowhere for Bert or the other residents to go. We had a call to pick him up, we had to bring him to our house but you know it’s only a tiny cottage now, and it’s driving us mad, however sympathetic we ought to feel. We have to lock the door because he wanders off, he doesn’t understand why he’s moved. He won’t wash, he wakes up in the early hours and makes such a racket that we wake up too. We’ve been on the phone constantly trying to find another place for him, but there’s nowhere.”

“Why did The Hedges close?” asked Shirley.

“The company running it has gone bust, the bank insisted on cutting their overdraft apparently, and Golden Sunset Homes Ltd, I think that was the name, ran out of cash. Suddenly 15 old folk with dementia were evicted from The Hedges.

“I’ll come in a day a week to give you some time off,” offered Shirley, who thought her friend looked haggard. She remembered reading in the newspapers the previous week about a new campaign to legalise assisted suicide in cases of terminal illness. What exactly is terminal illness, she wondered. Life itself is terminal. Dementia, the gradual death of intelligence, was no more terminal than any other degenerative disease. Also dementia sufferers were, by definition, no longer of sound enough mind to decide if death were preferable to life.

Sylvia was talking again. “I’m worried that I’m going to end up hating Bert, I have to keep telling myself that it’s not his fault. I blame Social Services. Bert was paying for himself, he could afford to after selling the house, but I think 11 of the residents were funded by Social Services, and they wouldn’t pay enough for the home to be run properly.”

Shirley thought that the financial dilemmas afflicting social services departments, and their parent local authorities, were only the ordinary household’s situation, magnified. Investments yielding scarcely anything, big tax rises coming in a few weeks, something had to give.

A shrill noise was coming from Sylvia’s handbag. “My mobile phone,” she said. “It’s Mike….Hello….Oh dear….Yes I’ll be right back…”

“Bert’s wandered off again,” sighed Sylvia, getting up and leaving a half-drunk cup of revitalizing coffee. “Got to go.”

Background information

Meet the Halls, my mythical family:  Rob Hall, born on January 2nd 1970; his wife Janie (February 25th 1972); their children Emily (March 5th 2002) and Joshua (May 4th 1999). Rob’s parents are Tim (November 12th 1937) and Beryl (April 20th 1940). Janie’s parents are Shirley (April 22nd 1946) and Bill Priest (October 17th 1944).

The Mail, Saturday February 15th 2020. ‘Workfare for care home residents’ by Christabel Flint.

Maisie Duff, 85, is a great-grandmother, has two artificial hips and is partially sighted. She is one of 65 residents in the Victoria Place Care Home at Brackside in Berkshire, and has been told she will have to work two days a week if she wants to remain in the home. Her only son David, 52, said: “It’s a disgrace. She’s got no money left, and social services won’t pay the fees the care home owners charge.” (more…)