Devoted carers need caring for too
DEMENTIA is both unforgiving and horribly cruel. it destroys people with merciless efficiency, dismantling their minds piece by piece.
and watching someone you love go through it is a unique kind of torment.
They are there ... but not there. you are powerless, and can only watch as they slip away slowly to an unknown place where you cannot follow.
Scott Mitchell, husband of one of Britain’s best-loved actresses, Barbara Windsor, spoke movingly this week of the difficulties of living with someone in the throes of dementia. Dame Barbara, now 81, was diagnosed with alzheimer’s disease in 2014.
in an TV interview to publicise his taking part tomorrow in the london Marathon, alongside cast members from eastenders — his wife played Queen Vic landlady Peggy Mitchell between 1994 and 2016 — to raise money for the charity initiative Dementia revolution, Scott spoke of his wife’s ‘horrible moments of confusion’, which he described as heartbreaking, and her utter reliance on him.
‘She knows who i am, and i’ve become quite a focal point,’ he explained.
‘in the confused moments, she’ll look at me and say “as long as i can see you, i know something is OK” even if she doesn’t place the house or room.’
Scott and Barbara have been married for 19 years and his words are testament to the power of love: an acknowledgement that, despite the disease taking so much, their bond is still a source of comfort to Dame Barbara. BuT
they also lay bare what an incredible responsibility it is for one person to shoulder: to know that when someone is acutely distressed, confused and disoriented, their only source of solace is your presence.
it is a burden that tens of thousands of carers bear willingly, 24/7, but we should never underestimate the pressure that they are under.
if someone like 56-year-old Scott finds the emotional turmoil draining, just think how difficult it must be for often frail, elderly partners with limited resources or no family network to call upon?
They work tirelessly, out of a sense of love and duty, to look after often fractious and distressed individuals, with little respite. Without them, the NhS would fall apart under the demands of caring for dementia sufferers.
yet the physical and emotional cost to carers is high, and it is inevitable that their selflessness can take its toll.
i have witnessed this frequently. i remember one old lady — i’ll call her Mrs Maddox — who’d been doing her weekly supermarket shop when she developed chest pains and collapsed.
When she arrived in a&e, the ambulance crew told me she was anxious and kept asking: ‘Who will look after Manuel?’
Mrs Maddox had suffered a heart attack, but when i explained to her that she would be admitted to the cardiac unit, she shook her head. ‘What about Manuel?’ she asked again. ‘i can’t come into hospital, i have to look after him.’
We established that Manuel was her 85-year-old husband. he had advanced Parkinson’s disease and dementia, and could do nothing for himself.
at 83, his wife ran their home and attended to all his needs. There was no other support.
Mrs Maddox wasn’t worried about herself but only about how her health problems would affect him. Without his wife there as a reassuring constant in his day, he would become even more confused and scared.
it was a heartrending situation, but she was my patient and she was in need of help — and that had to take precedence. i told her she had to stay in hospital and we would let social services know about her husband.
She agreed — eventually — and next morning when i visited her on the ward, she told me she’d had her first uninterrupted night’s sleep for eight years.
When she was discharged, we arranged for regular respite care to be put in place. yes, it was difficult for her husband at first but those with dementia can learn to be reassured by regular visits from others.
respite care is a vital part of the social welfare system if we are to support Britain’s quiet army of carers. We need to make it more widely available and to publicise it.
We must never forget that the carers need caring for, too.