Why the woman I love is now a stranger

Published on Tuesday 17 February 2009 20:57

IT WAS the little things at first – the momentary loss of concentration and then her failure to remember the names of their grandchildren. But John Suchet's concerns about his wife's forgetfulness culminated in the stark realisation that the woman he loved had become a stranger to him, and she was suffering from Alzheimer's.

Yesterday the former ITN newsreader spoke candidly about the couple's daily battle against the disease and how dementia was robbing him of his life partner.

Speaking publicly for the first time about one of the toughest events of his life, he revealed the torment caused by his wife's illness, saying: "It's as if she has died."

The broadcaster said the illness, which he prefers to call "the A word", had "taken" Bonnie, his wife of 24 years, since she was diagnosed with Alzheimer's disease three years ago.

"The past we shared is a closed book to her," he explained. "The Bonnie I loved has actually gone. It's as if she has died. Dementia has taken her."

Last night campaigners said Suchet's experiences had lifted the lid on a national crisis affecting an estimated 700,000 people in the UK. And his predicament had highlighted the lack of help available for carers, with only a handful of specialist Admiral Nurses in the UK. Charities insist reform is urgently needed and stress the cost of dementia to our economy – a staggering 17 billion a year – 6 billion of which is absorbed by carers.

Suchet, 64, admitted that the situation had become so dire he had even considered suicide. He explained that his wife now needed to be dressed and no longer knew which families their five grandchildren belonged to. It has also been many months since she had gone out or even cooked a meal. For long periods, he had managed to keep her condition secret from all but family and close friends.

The former anchorman for ITN, who presented News At Ten to millions of viewers, said he had gone from being "a lover to a carer" and there were days when he simply could not cope.

"There are times I want to bury my head in my hands. When I persuade myself she would be better off without me because I'm crap at handling this. You have suicidal moments."

Bonnie began to develop symptoms of the devastating brain disease in her early 60s, and is now aged 67. She was diagnosed with dementia three years ago, after sporadic instances of forgetfulness and confusion. For some time Suchet dismissed her behaviour as nothing more than absentmindedness, but he distinctly remembers the day when he realised it had developed into something much more serious.

It was during a trip to France four years ago, and while they were waiting for their flight Bonnie had gone to the nearby ladies toilet, but was unable to find her way back to her husband. On a later trip to the United States, she passed out in a restaurant and three years ago a neurologist in London diagnosed Alzheimer's disease.

"I said: 'Don't worry. Everything's fine.' And she believed me. Still does. The only good thing about this... disease is that it protects the person from what is going on."

Like many carers he speaks of the cruel nature of the disease, contrasting Alzheimer's with cancer, saying that if she was suffering from the latter they could still be intimate and would be "figuring how to fight the bloody thing" together.

He said perhaps the biggest irony of dementia was that the patient was oblivious to the disease, and it was the carer who needed much of the help.

He added: "It's devastating. The most difficult thing for me is that Bonnie doesn't know she's got it and that's the unique quality of this awful, awful disease.

The full weight falls on the shoulders of the carer and they need help."

The award-winning journalist now has some in-house assistance to help look after his wife at their London home, but he points out that he is one of the lucky ones.

He talked of the "postcode lottery" which left thousands of carers to fend for themselves, without the aid of specially-trained Admiral Nurses.

He said the Admiral Nurse who helped to care for his wife had "probably, quite literally, saved my life" and he only has access to the specialist help because he lives in the City of Westminster – a part of London where the NHS has paid for eight such nurses. There are only about 70 Admiral Nurses in England, and one service in north Wales, in Flintshire. Scotland does not have any.

The couple's Admiral nurse, Ian Weatherhead, talked of the guilt and frustration commonly felt by carers.

"I've yet to meet a carer who hasn't shouted, sworn or got angry at the person they're looking after – and then felt guilty. Families row. It's a normal part of life.

"And yet people feel so bad about it when they're caring for someone with dementia, because they're exhibiting emotions to someone who can't understand or comprehend what's going on."

Harriet Millward, deputy chief executive of the Alzheimer's Research Trust, said that by speaking so frankly about his wife's condition, Suchet had highlighted the toll dementia takes on the 700,000 people in the UK, and their families.

"Dementia costs our economy 17 billion a year – 6 billion of which is absorbed by carers – and radical reform is urgently required.

"The long-term solution to our dementia crisis is to invest in research.

"Dementia research is severely under-funded in the UK, receiving eight times less government support than cancer."

Kirsty Jardine, awareness manager for Alzheimer's Scotland, said there continued to be a lack of help for dementia patients and their families, and with an ageing population the situation looks set to get even worse.

She described services as patchy, with some local authorities offering more help to families than others.

In Scotland, there are currently 63,000 people suffering from dementia but by 2031 that will increase to 110,000. She believes that one of the reasons families fail to get support is due to the stigma associated with the disease.

"I think there is a real stigma attached to the illness. 20 or 30 years ago people never said they had cancer and dementia is still like that.

"Whether through fear or shame a lot of people won't tell people that their relatives have it."

"It's all very well knowing they have the condition but that won't help them unless they have one-to-one help and someone who will talk things through with them," said Ms Jardine.

"We need more help and people on the ground.

"In a lot of cases people only receive support when they have reached crisis point.

"In the later stages ... the carer is deprived of the very person who would help them through this traumatic experience."

Dementia time bomb is threat to future of care services

AN ESTIMATED 63,000 people in Scotland suffer from dementia and campaigners have warned that an ageing population could see that figure reach 110,000 by 2031.

It is feared that health and social services could be overwhelmed in coming years unless urgent action is taken to tackle diseases such as Alzheimer's.

Charities recently called for an additional 150 million to fight the dementia epidemic, insisting that if younger people were affected by the condition, rather than the elderly, more help would be available. The number of people under 65 with dementia in Scotland is put at fewer than 1,600.

The Scottish figures reflect the wider UK picture – with 700,000 dementia sufferers in Britain. By 2051 that figure will rise to about 1.5 million.

While some change in memory is normal as we grow older, the symptoms of Alzheimer's are more than simple lapses in memory. People with Alzheimer's disease face difficulties communicating, learning, thinking and reasoning – problems severe enough to affect work, social activities and family life.

Those with Alzheimer's can become lost in their own neighbourhood, forget where they are and how they got there, and not know how to get back home.

Patients can forget entire experiences and gradually become unable to follow written or spoken directions. In the later stages of the illness, they can become unable to care for themselves.

Sufferers often find it difficult to complete everyday tasks and a person with dementia may not know in what order to put on clothes or the steps for preparing a meal.

In recent years scientists have made significant progress in understanding the possible causes of dementia, but many questions remain unanswered. It is likely that a wide range of complex factors, inherited and environmental, play a part in triggering the disease.

Alzheimer's disease is the most common cause of dementia and accounts for 50 per cent to 60 per cent of all cases. It destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories.

It is progressive and symptoms worsen over time. How fast the disease takes hold and what pattern symptoms follow vary from person to person.