‘Our House,’ a home from home for brain injury survivors, carers and their families
Brain Injury Foundation chair, Frank Dolaghan may be in his 70’s but he shows no sign of easing into retirement as he greets people arriving from across Northern Ireland for the opening of the Foundation’s new premises near Newry.
Called ‘Our House’, this new user led centre of excellence for brain injury survivors, their carers and families was made possible following a £350,000 grant from the Space and Place programme. However the centre also exists because of the tragic circumstances experienced by many of those behind its inception.
Twenty three years ago, Frank and his wife Aileen received a phone call at seven o’clock one morning which would change their lives forever. Their 22 year old son Tony had fallen 40 feet off a cliff whilst on a weekend break in Donegal.
“The consultants told us that Tony had a serious brain injury and they couldn’t be sure of the prognosis.” Tony gradually began to come out of his coma and came home to Frank and Aileen some three months later. “It was a few months before Tony could eat properly or walk properly. He could do very little for himself, we were teaching him all those things all over again,” says Frank.
So began a long journey to recovery for Tony, a time which Frank recalls was very lonely for him and Aileen as they became his carers, “We had 12 to 15 years without any kind of external support really, you were very much left on your own.”
Eventually, Frank, Aileen and Tony met other carers and brain injury survivors who were in a similar situation and who worked together to set up the Brain Injury Foundation. “We had no premises, no money. It was about a year after we set the group up that we heard about the Space and Place funding and it took just under two years to get where we are now with ‘Our House’”.
The Space & Place Programme is a £15 million, five year capital grants project that seeks to provide an opportunity for communities to come together to identify a shared vision for their area and work together to deliver it.
(The completed Brain Injury Foundation building)
Funded by the Big Lottery Fund, the programme is managed by the Community Foundation for Northern Ireland in conjunction with the Northern Ireland Housing Executive, Public Health Agency, NI Environmental Link, Rural Community Network and Groundwork NI.
As Frank explains, “Centres like ‘Our House’ are necessary as the biggest single issue facing survivors and their carers is loneliness. Often friends disappear, survivors and carers sit at home, they no longer have a social life, there are no discos, football games or restaurants for them.”
That sense of isolation is something which many of the Brain Injury Foundation’s service users describe. Martina Dickson vice-chair of the Foundation says ‘Our House’ is a place where people can feel comfortable and understood. “We each know when something is not right, it’s the simple things”.
(Michael Hughes - Space and Place Programme Co-ordinator, Jane Wilde - Space and Place Grant Sub-Committee Independent Chair, Mark Creaney - Big Lottery NI Fund Manager, Frank Dolaghan - Brain Injury Foundation Chair)
Martina’s son Christopher experienced a brain injury following a car accident in January 1999. He remained in intensive care for seven weeks initially and it was only later that Martina found out he had not been expected to survive. Christopher spent seven months in hospital before coming home.
“I didn’t know if I was doing the right thing when Christopher came home, none of us knew anything about brain injury. Looking back I don’t know how I coped because I think a brain injury is the most awful injury, it’s not always visible.”
Martina describes Christopher’s recovery as a long, hard, lonely journey during which his father, Brian, was also diagnosed with a brain tumour.
“We could have really done with the Brain Injury Foundation then. Everybody’s awful good but it’s the not knowing of what you are going to face the next day.”
Three years after his accident Christopher had learnt to walk and talk again with one of the consultant’s describing him as a ‘miracle boy’. His father Brian also recovered and Christopher got married this summer having met his future wife through his involvement with the Foundation.
(Martina and Brian with Christopher on his wedding day)
Martina hopes other families can now benefit from ‘Our House,’ “We’re so lucky to have been awarded the money. We had one room before and the use of a hall but now we have our own centre where people can play table tennis, pool, take part in Pilates, there’s a Tuesday club where survivors cook lunch for everyone, the centre is always open and there’s a welcome for everybody”.
One of those helping Frank welcome visitors through the doors of the new centre is brain injury survivor Duana. Her mother Diane says the centre has transformed their lives. 29 year old Duana has been experiencing seizures since the age of 10 when she was diagnosed with epilepsy following a serious illness.
“Duana had to learn everything all over again, her memory had gone. We sat in the house alone, there’s lots of days you can’t go out and even when you can, there are only shopping centres to go to. It had got to the point where I thought if I can’t look after myself, how can I look after someone else, who else does she have?”
Diane says that the Brain Injury foundation has changed all that. “We have developed tremendous friendships through the Brain Injury Foundation and its programme of activities. Life has gained a new meaning because of what we have gained from being members of the Foundation. It’s like a home from home, Duana helps Frank in the office where she has her own desk and I have met other carers which has broadened my support group”.
(Diane and her Daughter Duana)
Frank and the committee have big plans for the future of the Brain Injury Foundation. “Without the funding from Space and Place, ‘Our House’ would have remained a dream. We have a very driven group of volunteers and now we are getting new membership enquiries every week and want to expand the range of activities. We also work on a cross-border basis with Acquired Brain Injury Ireland and hope we can encourage them to bring some of their successful initiatives, especially in the area of accommodation, to Northern Ireland.”
It’s clear that Frank and the other volunteers are passionate about the centre they have created: “If you come here on a Friday night, you would hear the craic at the top of the road, it’s magic. Tony has friends now which he never had and he’s learnt to dance – to be at a party and see your son dancing, it’s very difficult to put words on how you feel, you never thought you would see the day,” says Frank.