Losing Nancy

STEPHEN LEWIS speaks to a York man who watched his own wife's struggle with the disease

THERE is, admits Jim Clunie, a 'certain amount of anguish' in watching someone you love succumb to Alzheimer's Disease. It's just over 18 months since his wife Nancy died, and the warm Scottish accent in which he speaks can't begin to hide the pain. He watched his wife slowly deteriorate for years. For the last two, she could not even talk to him. She did always recognise him when he went to visit her at The Retreat, though, her face lighting up when he walked into the room, and he says that somewhere inside she was still the wife he loved.

"If someone had known her ten years earlier and called on her in the middle of her time there (The Retreat), they would have been shocked at her mental deterioration," says Jim. "But the personality, the you, was still there."

He takes consolation from the fact his wife was never aware what was happening to her.

In the film Iris, the great novelist Iris Murdoch, who was also stricken with Alzheimer's, does know in the initial stages what is happening to her. "I feel as if I'm sailing into darkness," she says.

It wasn't like that with Nancy, says Jim. He never discussed her condition with her, even though her elder brother, Lawrence, died of Alzheimer's about the time Nancy first began to develop symptoms.

"It would have been an immense shock to her," he says. "Her brother had died of Alzheimer's, but she never seemed to relate this to herself.

"I think one of the consolations for someone who will die like Mary is that they are completely unaware what's happening to them. There's no suffering." He pauses. "My feeling is that she would never have admitted anything like that to herself. But how can you tell what's in someone's mind?"

Jim and Nancy married in the mid-50s, when he was a junior lecturer in maths at the University College of North Staffordshire (now Keele University) and Nancy was a cartographer in the geography department.

She was a very nice person, says Jim. "She was quiet, perhaps a bit diffident at times, but bright, and very interested in life." She was also interested in art and music: an accomplished painter - her portrait of their daughter Fiona hangs on a wall of the home in Heslington where Jim still lives - and musician. She was a talented piano player when younger, and remained keen on music.

The couple had 45 years together, during which Jim rose to become a Professor of Mathematics at Imperial College, London.

Then, about 12 years ago, after they had moved back to Nancy's home city of York following Jim's early retirement, Nancy began to become forgetful. It didn't seem anything to worry about at first, says Jim.

Then nine years ago they went to visit some friends in Adelaide, Australia. When they came back, Nancy's memory began to deteriorate more rapidly. Jim remembers meeting some old friends and talking about Knaresborough, where Nancy had gone to school. "Nancy didn't seem to have any memory of being there at all," he says.

She was diagnosed with Alzheimer's, and began attending the Beckside Day Centre twice a week, and to receive weekly visits from volunteers with Age Concern's In Safe Hands scheme. But gradually, her ability to do things around the house deteriorated.

Jim took over more of the household duties - including the cooking. "I'm not much of a cook," he admits wryly. "I'm a great one for getting meals and sticking them in the oven. But I could see she just could not cope."

The decline was gradual. "She would be doing stuff, and I would be helping, and gradually she did less and I did more and more." She had always knitted his socks for him but had to give up.

"She struggled to keep painting, but eventually gave that up, too.

In 1997, after a visit to Bootham Park Hospital for assessment, Nancy began to decline more rapidly. "She would wake up in the night and keep asking: 'What shall I do? What shall I do?'" Jim recalls. "She didn't understand that there is nothing you can do, that it was the middle of the night."

Nancy went briefly back to Bootham Park, and then Jim arranged for her to go into The Retreat, where she remained for the next three years, until she died in the early hours of June 19, 2000, aged 77.

She'd been only semi-conscious during her last few days, and passed away quietly during the night. "There was no pain," says Jim "I went down the evening before and it looked as though she would survive to the morning and I came home to get back early, and she died during the night."

Jim can't speak highly enough of the care Nancy received at The Retreat. The dedicated staff helped ensure the last three years of her life were happy ones, he says.

She had a room to herself and Jim would visit her and they would have meals together - at least until she was no longer able to feed herself.

"She was having difficulty with things, she started playing with her food rather than eating it, perhaps like a child." says Jim says. "Nurses then fed her."

Many sufferers from Alzheimer's undergo personality changes and mood swings in the later stages of the disease. That didn't happen with Nancy, says Jim. "She had an equable temper, and the nursing staff said that during all her time there she was a very nice, easy person to cope with.

"She was so well cared for and so happy at The Retreat. You can tell when someone is content, at least when you've lived with them as long as I had with Nancy."

A month after her death, a memorial meeting was held for Nancy at The Retreat. It was more like a Quaker meeting than anything, says Jim. Friends who had known her took it in turns to say a few words. Nancy's daughter Fiona quoted a few lines from the poem Music I Heard, by Conrad Aiken...

"Your hands once touched this table and this silver,

"And I have seen your fingers hold this glass.

"These things do not remember you, beloved,

And yet your touch upon them will not pass."

Fact file:

Alzheimer's Disease is the most common form of dementia, responsible for more than half of the UK's 700,000 cases. It is mainly a disease of older people, but can affect those as young as 30 or 40.

The disease destroys brain cells, disrupting transmitters that carry messages in the brain, particularly those responsible for storing memories.

Symptoms typically begin with lapses in memory and confusion. As the disease progresses, sufferers may undergo personality changes and could also suffer mood swings. In advanced cases, they may begin to adopt unsettling or inappropriate behaviour.

Ultimately, the sufferer becomes totally dependent or bed-bound.

The York branch of the Alzheimer's Society, based at The Retreat, is organising outings to see Iris at City Screen for relatives of a person with dementia. There will be a chance to talk afterwards. For more information, or for advice about Alzheimer's, contact the branch on 01904 430020.

Updated: 10:25 Monday, January 28, 2002