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Sunday, 10 July 2011

* YOU BEEN SNAP * Mum’s dying – and her nurses put me to shame""

* MKILETEWA HAPA NA FLORA LYIMO DESIGNER*


It's a tragedy when anyone becomes old and infirm, but somehow it seems more shocking when that person was once defined by their physicality, their talent, their elegance. In the news last week was the decision by the Supreme Court to deny an overnight carer for Elaine McDonald, who is now 69 but who was once a prima ballerina.

She suffered a stroke just over a decade ago and needs help to get to the bathroom. Her local council, Kensington and Chelsea, advised her to use incontinence pads, thereby saving themselves £22,000 a year.

This was the story that shocked me most over the past few days, a story that should exercise David Cameron as much if not more than the phone-hacking scandal.

In her prime: Scottish Ballet principal ballerina Elaine McDonald performs the Dying Swan from Swan Lake in February 1983
And now: Elaine McDonald at the supreme court as she appealed against Kensington and Chelsea's decision to with support for a night carer.
In her prime: Scottish Ballet principal ballerina Elaine McDonald performs the Dying Swan from Swan Lake in February 1983; and, at the Supreme Court for her appeal'

My mum was a ballerina, though not a prima one, as she gave up dancing to raise her family of seven children. Aged 92, she has spent a decade bedridden, and is suffering from dementia. She is now dying.

As I drive up the M11 to visit her, still in her own home in Saffron Walden in Essex, I thank the Lord she does not live in Kensington and Chelsea. Her decline over the past few days has been swift. She sleeps, mostly, and has barely eaten in a week. The only liquid she has taken on board has been water, syringed into her mouth. But at her small rented house on Friday, it was like being in the middle of Piccadilly Circus.

As well as her live-in nurse, a lovely young woman from Latvia who takes a holistic approach to looking after my mum that extends to planting flowers in the garden, there are three uniformed carers a day who come in to help with the heavy lifting and changing.
I meet the District Nurse, Liz, who remembers my name even though we last met more than ten years ago, when my dad was dying. At one point my mum’s bedroom (free special mattress from the NHS to avoid bedsores, of which she has not one; free hoists; free wipes and creams and lotions – it’s like the bedroom of a newborn) is so crowded I can barely see her Mrs Pepperpot grey head.All the women clearly love my mum, spending time to laugh with her, stroke her head, and generally talking to her as though she is a human being, not a blob. They put me hopelessly to shame because I just sit there, useless, scared, typing away on my laptop.

My mum comes under the aegis of Uttlesford District Council, which must be peopled by saints. Given that my mum is dying, she is getting palliative care for three months, which is completely, 100 per cent free. The family has in the past had to contribute to the cost of her care, to the tune of about £600 or £700 a month.

I imagine that the amount of nursing is so extreme now, it would be far cheaper to dump my mum in a geriatric ward, but this option has not even been raised by her social worker. (When Mum could talk, she always giggled about having a social worker. ‘It’s as though I’ve been naughty!’ she’d say.)

What could have been a traumatic time, entangled with red tape and bureaucracy and endless reassessments, is instead one of peace, and security. It used to enrage me, when my mum was more mobile, that we had to reapply every year for the disabled badge for the car. ‘Who is she,’ I once shouted down the phone, ‘bleeding Lazarus!’

And so I sit here with my mum. Occasionally, on a good day, she has a moment of clarity. ‘Have you got a bed?’ she asked the other night. I’m on a camp bed in the lounge, taking comfort from being surrounded by all her trinkets: the brass pot containing my dad’s Parker pen, the photos of grandchildren.

Scandal: The decision on care should exercise David Cameron as much if not more than the phone-hacking scandal

Scandal: The decision on care should exercise David Cameron as much if not more than the phone-hacking scandal'

My sister, a nurse, thinks my mum is aware of what is happening to her, but that it’s all right, because she is tired of being alive. God only knows how families cope if they don’t live in Essex, but instead inhabit a part of the country where our old people are wrestled from their homes due to swingeing cuts.

The Dilnot Commission recommendations released last Monday – that no one should have to pay more than 30 per cent of their savings and assets towards meeting the cost of their care, and that there should be a cap on the cost of care – will doubtless prove too expensive to be brought into practice, as more of us live longer. But better national standards, a levelling-out of care, are surely essential.

My mum, when first she had to tackle all the forms and the assessments, would always say she was ‘in a pickle’. For now, I’m just grateful she is in such good hands.

All that is left to do is say goodbye.

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