ALICE O'Hanlon was only married two years when her brother Sean suffered permanent brain injury in a road traffic collision in 1975. Almost 40 years after caring for him in isolation, she has now found a "home from home" with the opening of a new community-owned centre of excellence for brain injury survivors, their carers and family members, in nearby Camlough, in south Armagh.
Alice was 27 and living in England when she received the news that Sean, who was working 50 miles away across the border in Wales, had been badly injured when his car's brakes failed and he went into the side of an on-coming lorry.
"He was transferred to a cottage hospital where there wasn't even a life-support machine. We were told he was going to die, but somehow Sean pulled through and spent many months transferring between hospitals in Wales, Liverpool and Manchester," she recalls.
"There was nothing out there for brain-injuries rehabilitation at that time and sadly the situation hasn't improved much. Eventually he was allowed home to us at weekends and we could see he was agitated when the time came for him to return to hospital." This was a positive sign and gave Alice hope. When he was finally discharged from hospital Alice gave up her job to caring for Sean in her home.
"We were never given any training or support. We just watched how the nurses lifted him and cared for him and copied that," she says.
Alice and her husband Tom also paid for for private physiotherapy and speech therapy and tried to keep Sean constantly occupied to stop him getting frustrated. After a few years, they decided to move back to Ireland and her husband's native Co Armagh.
Apart from going one day a week to a day centre, Alice still received no practical or emotional support – until she met Frank Dolaghan, chairman of the Brain Injury Foundation (BIF). The charity was launched in 2012 by Frank, whose own son Tony suffered a brain injury after falling from a cliff in Donegal more than 20 years ago. It has more than 100 members from the Newry, Newcastle, Armagh, Banbridge and Dungannon areas and aims to empower brain injury survivors and their families through a programme of activities and services which address their needs.
"The biggest problem for brain injury survivors is also social isolation – they are just sitting at home playing games or watching television. We are changing that,” says Frank.
Having outgrown their temporary shared facilities in Newry and with the help of a £350,000 lottery grant, last month the charity opened a new centre, providing survivors and career with a permanent space in which they can meet. The community-owned facility, run entirely by brain injury survivors and their families, is the first of its kind in the north.
"The centre, named Our House by one of our brain injury survivors, is intended to be just that – a place which is welcoming and inclusive, open, homely and comfortable. To see four members playing Monopoly, even if no-one knew all the rules and to see two members sharing brain training games on their tablets are but two snapshots of what might seem trivial but which in reality are creating Our House," a proud Frank says.
The centre is fully wheelchair accessible with its own kitchen, large activity hall, games room, quiet room for those who have a seizure when attending, an accessible wet room, garden and patio area.
Already the new centre has made a difference to the lives of the members. It is open daily from 10am to 4pm on weekday and offers a friendly drop-in centre, where the kettle is always on the boil. Activities which take place regularly include pilates, arts and crafts, cake decorating, flower arranging and computer tablet training. There is also the weekly Friday Open House, where members socialise by playing board games, pool, quizzes and table tennis and monthly parties or events and day trips.
While admitting daily life has it's ups and downs, Alice says life is now good thanks to the peer support of friends in The Brain Injury Foundation (BIF).
"Life as a carer is very hard. With Our House you can call in any time for a cup of tea and a chat. Sean loves the interaction and the music, and I enjoy meeting the other carers for cooking and crafts. We were in Newry for 20 years and I had never met a person who was dealing with a person with a brain injury.
"It's wonderful to be able to talk to people who understand what you are going through. Everyone had the same story – the low days you have to be prepared for, the loneliness and the isolation."
The foundation also arrange an annual four-day respite trip to Galway and while Alice is clearly delighted and relived by the support she receives through the charity, she has a strong message to the health minister.
"I feel I've achieved a lot in those 40 years of my life as a carer, but my biggest desire is that there would be respite care available for those younger and middle-aged people with brain injuries. Parents and carers are getting older and there is nowhere for them to go only an elderly home, which is no place for them. There needs to be somewhere else that can keep them together and give them appropriate support."
:: The Brain Injury Foundation welcomes membership from anyone over 18 with a brain injury and their carers and family members. Anyone interested in membership can get in touch with Frank at frank.dolaghan@btclick.com, telephone 028 3083 9943 or 0774 0823 713 for an informal chat or to arrange a home visit.
