Getting a break: For families where one member is disabled, there are difficulties in planning a family holiday. A new MS respite centre in Dublin offers a chance of a break, but there aren't enough such places for all the country's 250,000 disabled. Anne Dempsey reports.
For Martin and Brigid Jones and their family, the summer holiday was a time for activity. "We took a house in Wexford, and we'd be swimming, playing sport, on the beach. We had great holidays," says Martin.
Martin was a marathon competitor, who thought nothing of a 20-mile summer evening run. In 1996, Martin had trouble with his right foot. In 1997, the problem was diagnosed as multiple sclerosis (MS), a chronic, progressive disease that attacks the nervous system. As yet, there is no cure. Within 10 months, Martin was in a wheelchair. He was 42 years old, and his children Declan, Aisling, Aidan and Matthew were then aged from 16 to six.
"I became very depressed. I became the MS patient, took on the role. But gradually, I began to come out of it. Life is for living, and these days, I am positive most of the time, and the condition has stabilised." Martin and Brigid work in the civil service. Martin is employed locally and can do some of his work from home. Brigid job-shares and is his main carer. While Martin is relatively independent, he can't be left on his own too long and needs help with many personal and practical tasks.
As far as holidays are concerned, sporty sorties to the south east are gone forever. "Of all the houses for rent in Co Wexford, we found only two that are wheelchair accessible, both very expensive. It's difficult to get around in Ireland and accessible facilities such as toilets are scarce," he says. "These days, it's a lot of compromise, bring your own ramps and make do with very difficult situations," she says. They find the Republic compares poorly with Northern Ireland in facilities and information.
This spring, Aidan won a holiday in the sun through a school raffle. They chose the Costa del Sol but the excitement was quenched when they examined the logistic difficulties of going abroad with Dad. Brigid says: "It would have meant travelling by day to minimise complications, two taxis to the airport, keeping an eye on everything there, checking in equipment and medicines, making sure nothing got broken. Then, at the other end, we would need a wheelchair-accessible taxi for Martin, with us following behind so to arrive at the resort together. We wouldn't know exactly what we were facing, but knew, for instance, we couldn't get around by bus. In prospect, there was so much that we couldn't control, and the realisation that one person in all this would not get a holiday - me!"
Martin says: "We had never been apart as a couple but you have to be realistic. I knew I would be frightened and insecure away from home, and Brigid would have had to do so much for me that she would have had very little holiday. I felt the kids would not get the chance again, I didn't feel noble, I just thought it was fair and just."
So, in June, Martin went to stay for a week at the new MS Care Centre in Dublin 6, eldest son Declan house-sat and the rest packed the sun cream.
"We left very early in the morning and it broke my heart to leave him. I knew he was lonely but he wouldn't admit it," says Brigid. Both holidays were a great success. Aidan (14) and Matthew (11) say they enjoyed the pool and had a great trip to caves at Nerja.
"It was different without Dad, he would have no way of getting around without a hover chair, it was too hilly, with too many steps," says Aidan. "It was a weird holiday in some ways, I would have preferred to have had my Dad," says Aisling. "It was hard for Mum, divided from Dad and knowing he was on his own."
Brigid, however, looks back with pleasure. "I missed Martin a lot, but a holiday without him meant we could be spontaneous and do what we wanted, when we wanted. You could see them realising what was possible and it made me see how much kids who are semi-carers give during the year. I was able to be with them all individually, not always possible at home where the main focus is on Martin.
"I relaxed, knowing he was safe. To be truthful, the minute I wake up at home, I'm running, getting Martin up, giving him his physio, seeing to the kids: some days I arrive at work feeling I've a day's work behind me already. On holiday, I was able to be myself again, Brigid, me."
Martin, too, was living it up. "I had my own en suite room, with television, radio, doors open to the garden. They have massage, reflexology, yoga, and I learnt to use the Internet. The grub is gorgeous, and they have an entertainments officer who organises a social programme. The aim is to give you a lovely holiday while being respectful of your dignity, and nothing was too much trouble. I was lonely, but I'm glad I did it."
Roseanna Duke is care manager of the revamped MS Care Centre which has 11 singles and one double room, and offers 24-hour nursing care for high-dependency patients. "The double room means that a friend or a partner can stay too. Many clients have been refused by other places where it's felt the patient's needs are too great.
"Eighty per cent of our patients have MS, but we take in people with motor neurone disease, Parkinson's or strokes. VHI pays towards the cost, medical card holders can apply for a subvention, but there is a shortfall. The true cost is just over €1,900 a week and we have to fund-raise the deficit." Duke spent 14 years as a senior social worker with a London local authority where people in need can choose from a menu of respite services and feels better provision should be made here. "Here there seems to be a great lack of recognition that carers need a break, as a right, not something they should be grateful for."
Brigid and Martin Jones agree. "Bertie \ opened the MS Centre in June and I had my picture taken with his hand on my shoulder. But I wish he would put his money where his mouth is. He had the power to nominate Kathy Sinnott to the Senate, but didn't do it. She would be a thorn in their side, speaking up for people with disabilities, but in the end they go away and don't want to hear," says Martin.
"I am one of 150,000 family carers," says Brigid. "I love Martin to bits and I'm not looking for him to be anywhere else than with us. But the government exploits this love. They assume the family will care no matter what the cost. Respite is very important, it helps you carry on, and there is a great shortage of respite beds in the country, particularly if you are under 65 years of age."
There are some 250,000 people with a disability in Ireland, including 28,000 with an intellectual impairment. The majority live at home with their family, cared for in varying degrees depending on need. There are approximately 8,000 people living in residential care, according to figures from the Department of Health and Children.
RESPITE care provides a holiday for patients/clients and a break for families, allowing everyone involved to have a day, weekend or week away from the other. There is, however, a huge gap between respite need and respite provision. In 2000, there were only 490 respite beds in the country, with that figure rising to 528 respite beds today. Some voluntary agencies have told parents and clients that there is no prospect of more beds coming on stream this year, as the funding is not forthcoming.
Karen Canning, secretary of the National Parents and Sibling Alliance, is a member of the monitoring committee set up three years ago by the Department of Health to monitor how funding is translated into service provision. She says that even those respite beds that are technically available are not always there.
"What happens is that someone in respite can't be taken home because the parent gets sick or whatever and so the respite bed is tied up. This means two families each week are left, one promised the bed from Monday to Friday and the other at the weekend. The result is that one bed becomingresidential deprives many families of respite as the weeks go on.
"If the Government tackled respite, it would make a huge difference. All people want is a break. We want to care for our children, but it's being abused. Many families don't have grandparents and aunts around them these days, and friends and neighbours are not so aware. It leaves you very much on your own."
