A day in the life of an 80-year-old carer

October 1, 2010

From Guardian.co.uk, “Comment is Free” section, 27 September 2010 (Story written under the pseudonym of Grace Richards).

In 20 years I have saved the state half a million pounds. Yet its adherence to regulations is a malaise money can't cure.

Today Phil has to visit hospital for tests – a difficult undertaking because she is bedbound and has been now for some 15 years. She is doubly incontinent and the swan neck deformity which began 20 years ago in all fingers of both hands has now twisted them to a state of utter uselessness. Little is yet known about the myalgic encephalopathy (ME), which she was diagnosed with back in 1986. Indeed, at that time, the medical profession tried to pretend ME was all in the minds of their patients – medics never like having to admit they are stumped.

Because we enjoy the late-night TV, it is not until getting on for 9am that I am awakened by calls from the next room. I struggle in bleary-eyed to change incontinence pads and to prepare and feed Phil some breakfast. She was always a very independent woman, an athlete as well as an academic, making it particularly galling to be in this state of utter dependence on others, but she rarely complains. Even eating is a problem: ME being a muscle disease, Phil cannot chew, so all her food has to be pureed and then fed to her.

Having been told I have high cholesterol and so might be prone to strokes, I set in motion the installation of an alarm for Phil to operate. Her twisted hands cannot use the alarm button supplied and three months later we are still waiting for the company to come up with a solution. I did follow things up the other day by asking if they thought they might be able to supply our needs before we had both died. They were not amused, neither did they seem concerned.

But, back to today: we buy in care for two hours each morning and evening. The supplying company is chaotic but the carers are highly skilled and very caring. Today's carer gives Phil a good wash and freshen up and, just before she leaves, we ease her into a dressing gown so that she is more respectable for her journey to hospital.

Paying for all this care has now used up more than half of our joint savings, although I have estimated saving the state about half a million pounds during my 20 years of caring in retirement. In London we were granted £10,000 a year in direct payments for care, but our new borough considers us too rich to need financial help.

About a year ago ,when Phil last had a hospital appointment, the men in green when they arrived said they were not licensed to use the hoist to get Phil off the bed and into their carrying equipment. Today, two crews arrive to get Phil down two floors of a very high Georgian house to the front door. That seems to cause them no problem but the initial job of getting her off her bed and into the carrying chair is a different matter. They say they were told there would be a carer present who would use the hoist. Last time they went away without doing anything because they are “not licensed to use hoists”. Stalemate once again because I, who am half the size and at least twice the age of any one of them, am proving stubborn too. In the middle of all this the phone rings – it is someone from the ambulance depot who tells me all the rules and regulations. Why, I cannot imagine, but it makes me finally blow my top. The four men in green are so moved by this that they decide to act whatever rules and regulations they may be breaking. With a virago in their midst they clearly won't risk their chances. Forthwith, very smoothly and easily, they lift Phil into the carrying chair and take her on the perilous journey downstairs with her feet sticking well out in front because her knees won't bend.

Finally, in the ward, the nurses seem doubtful whether they can find Phil a bed, but after a while she is safely tucked up. There can't be any more problems now can there? Yes of course there can! Back I go by bus across town to get incontinence pads because clearly no one is going to bother to find any from elsewhere in the hospital. Later, I receive the message that the exploratory operation is over: Phil has come round and is ready to return home. No. Cancel that. They cannot get an ambulance till the next day.

Neither money nor more legislation will cure this malaise of the health service. It demands a change of attitude: put the patient first and to hell with the regulations.

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