Next week is National Carer's Week - a time when we honour the millions of unsung heroes who provide continuous care for their sick or disabled friends and relatives. Ernest Cowley's wife Norma has had multiple sclerosis for more than 40 years, and nine years ago the couple had to make the difficult decision to have her cared for in a nursing home. Heather Bishop spoke to Ernest about being a carer, and the charity he has set up to help poverty-stricken children in Sri Lanka.

FOR MORE than 19 years Ernest Cowley held down a full-time job, ran a house, brought up his two young sons and looked after his wife Norma, who was crippled by the debilitating disease multiple sclerosis.

His life was one long routine of washing, ironing, cooking and cleaning. He never had a minute to himself, although he put on a brave face to his family and the rest of the world and got on with it.

It was Ernest who had to tell his wife that she had MS after the doctors said she wasn't strong enough to face the news. He spent 18 long months trying to reassure her there was nothing wrong even though he knew she was suffering from an incurable illness.

His caring and compassionate nature has led him to set up his own charity to collect and take out supplies to impoverished schools in Sri Lanka. But despite his charity work, his one priority is his 60-year-old wife, who he says always remains cheerful despite being paralysed from the neck down.

"I didn't know what to do for the best when I first found out Norma was ill," said Ernest, 61.

"It was the 1950s and the doctors said she wasn't fit enough to face the truth, but she kept getting pains and asking me what I thought was wrong. It was very difficult but I was taking the doctors' word for it as I thought that was best.

"I kept it secret for 18 months and it was a real relief when I told her. Her uncle had just died and somehow I felt the time was right. She just looked at me and said now that she knew what it was she could fight it, and she refused to give in."

Over the next ten years Norma's condition deteriorated. She was forced to give up her work as an auxiliary nurse and lost the use of her hands and legs. The family moved to a bungalow in Bierley which was specially converted for her wheelchair.

"The children were only four and six when Norma was first diagnosed but we just had to get on with it. I never questioned it, I believed in my marriage vows and I felt it was my responsibility to look after her," said Ernest, who works as an estate housing manager.

"Looking back now I don't know how I did it. I put on a brave face with my wife and sons and the outside world but I was crying inside. It was difficult as I had no life. Every day was the same and just consisted of getting up, getting my wife dressed and fed, getting the boys dressed, fed, and off to school, going to work and coming home, doing the housework and doing it all again.

"I couldn't show my wife if I was feeling upset as I didn't want her to feel like a burden. It was like I was a single parent and it was nine years before anybody asked me if I wanted any respite care as I didn't know it existed.

"My wife got looked after for two weeks and I went down to Birmingham to see my sister and it was just wonderful to get away."

Nine years ago Ernest had to make the difficult decision to have his wife cared for in a nursing home.

"We had talked about it and Norma realised the time had come when she needed to go into a home. She was expecting it for quite a few years.

"The doctor said it was either me in hospital or Norma in a home as I couldn't continue looking after her. She was paralysed and couldn't do anything for herself so I had to take her to the toilet in the night and turn her every two hours so she didn't get bedsores. I wasn't getting much sleep and going to work completely exhausted. But I'd looked after her for 19 years at home and we both realised I'd done what I could.

"It was such a shock when she first went into the home. I came back to an empty house and I didn't know what to do with myself.

"I went up to the home all the time and I got a nursing job there for five years so I could keep an eye on Norma. I found it quite hard to let go and I suppose I didn't trust anyone else to look after her.

"My work now is still near the home and I go up every day and see her, she just really amazes me.

"She's paralysed from the neck down, is in constant pain and has lost her sight, but she never complains. She's always happy and cheerful and thanks me for coming to see her and for looking after her.

"It's been very difficult for me watching someone I care about constantly deteriorating but I've no regrets about our life. When we first got married we didn't realise what our life was going to be like but we made the most of the years when Norma was still mobile."

Since 1990, Ernest has travelled to Sri Lanka more than 20 times to take aid to schools in impoverished communities. Now he has set up the Soma Weerasinge Memorial Fund in memory of a Sri Lankan woman who started up the charity work but was killed in a bus crash.

"It all began when I started a computer course at Bradford University and met a man from Sri Lanka. He told me about all the poverty and the suffering that went on there, and I wanted to see for myself," said Ernest.

"In 1990 I went there on holiday and I was amazed. I saw hundreds of people queuing up in a church to see an optician who came to the town once a year but they only had 15 pairs of glasses to give out. I can't bear to see people suffering and there was so much poverty there.

"I came home, made an appeal in the T&A and within weeks I had thousands of pairs of second-hand glasses which were cleaned up and given out to the people. On my next visit I went round some schools and saw what few facilities they had. Whole classes of children were sharing one pencil, they had no shoes on, and there was no running water in the building.

"Again I came back to Britain and collected hundreds of pencils, stationery, flasks and flip flops for them. I try and go over now as often as I can afford the air fare. The airline and the foreign office know me and they allow me to take unlimited baggage and provide me with transport and a driver to deliver the stuff to the schools.

"The charity is my thing and it keeps me busy. I can't bear to see suffering and some of the things I saw in Sri Lanka just broke my heart. The children all wait for me when they know I'm coming, and it's wonderful to see their faces when I show them what I've brought.

"My ultimate aim would be to build an orphanage out there for children who are forced to live on the streets. Many of the families are so poor they just abandon their children and you see babies as young as 18 months old wandering the streets on their own.

"Norma supports my charity work 100 per cent and she's the first one to tell me to go to Sri Lanka, but she knows that she always comes first."

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.