The Peter Bradley Foundation has been set up to care for young brain-injured people whose only alternative is living in homes for the elderly, writes Kathryn Holmquist
Peter Bradley has trouble with words. He can hear them and read them - but finding the right words to use when he is expressing himself is a problem. Talk to him about literature - especially science fiction - and he's confident. Ask him about his spirituality, or about the fact that his family has established a foundation in his name, and the response will be more diffident.
It's not that this university-educated man cannot grasp the concepts, it's that he's moved beyond them. Do such things really matter when survival is the challenge?
Peter's success is that he lives from day to day. He looks forward to what he'll be doing at 4 o'clock and 6 o'clock. His triumph is that he optimistically envisions the next hour, the next day, the next week, and the week after that. He also gives great hugs.
Flashback two years ago to Peter Bradley, when, at the age of 42, he was living in a home for people with Alzheimer's in south Co Dublin. He was there because he had been brain-injured in a car accident while doing voluntary work with prisoners in the Philippines.
Surrounded by elderly people with dementia, Peter started a lot of conversations that couldn't be finished. So he stopped starting conversations. When his family visited, he was well-dressed, well-fed and his pillows well-plumped. But Peter Bradley was dying inside.
He had given up the independent life he had enjoyed before. And that life itself had been hard-won. Because this was the second time Peter had struggled to overcome brain injury.
Flashback again to 1980, when Peter graduated with a law degree from UCD and, in the week before his final solicitors' exam, he was knocked off his motorbike by a car. He survived as a result of pioneering neuro-surgery, but suffered many problems. He didn't recognise his parents or his girlfriend and much of his college learning had evaporated. He lost the sight of one eye and hearing in one ear.
Yet he went on to live independently, and to do voluntary work in the Philippines. Now, after his second brain injury, his family had no alternative but to place him in a home for the elderly that could not possibly stimulate his active mind.
So his sister, Barbara O'Connell, decided to take action. Barbara was, until last month, head of the occupational therapy department at the National Rehabilitation Institute in Dún Laoghaire. She knew first-hand that there is absolutely no aftercare for brain-injured people once they have been sent home to their families.
Barbara and Peter's sister, Paula Bradley, head speech and language therapist at the National Rehabilitation Institute, also knew that life outside rehab was grim both for sufferers and families.
"There are no services once people leave the National Rehabilitation Hospital, the great rehabilitation they get there is often lost when there is nowhere suitable to go with the supports to carry these programmes on. Overnight, families are expected to become therapists, personal assistants and to be wholly responsible for the 24-hour care of their previously independent relative with no training and no support. Often the person being cared for, the survivor, has no understanding themselves of their limitations," she says.
In other words, wives who were once lovers become carers, parents who once took joy in their young adult children's independence find themselves babysitting "children" who don't want to be babysat. Brain-injured people may even lose the ability to recognise those who love them and, even if they do, may lose the emotional tact required to sustain normal relationships.
But that's not the worst.
The worst is that 16-year-olds with brain injury are living in psychiatric hospitals like St Ita's, Barbara reports. Thirty-five-olds are lumped in with dying elderly patients because there is nowhere else for them to go. "We are at ground zero for specialised and specific services for people with acquired brain injury," she says.
The Bradleys and O'Connells are not families who give up. Barbara is married to Maurice O'Connell, chairman of the board of the Alzheimer's Society. The couple have a child with Attention Deficit Hyperactive Disorder. They live in the real world and, with their experience both as consumers of health board services, and as workers within the health board and voluntary organisations, they knew that if something was going to happen for people with brain injury, they would have to do it. The Bradleys were inspired by their mother, Dr Esther Bradley, one of the founders of Accord (formerly the Catholic Marriage Advisory Council) and by a family tradition of changing the world through voluntary action.
Flash forward to Glenageary, August 2002. Peter is living with two other young men with brain injury in a specially modified house, which was once the home of Peter's grandparents. Ray, from the Phillippines, is among the team of specialised staff who care for Peter and his housemates 24 hours a day. The running of the home costs €200,000 per year or about €60,000 per person - not much more than the cost of a nursing bed, which is about €45,000 to €50,000 per year. And for the €60,000, you get rehabilitation in the price.
The difference between the Peter Bradley Foundation and a nursing home is that the foundation believes people with brain injury keep getting better. With the appropriate help, they grow more, not less, independent.
Assisted living requires trained staff who understand that every day means more growth, as long as everyone is patient.
People with acquired brain injury can learn to bathe themselves, dress themselves and cook dinner for their housemates. They just need a little specialised encouragement.
Barbara has set up the first Peter Bradley Foundation house in the belief that it will work as a model for others around the country. Dozens of families - a fraction of those caring for the 14,000 brain injured people in the State - have already applied to the foundation for places (see panel).
Even if the foundation cannot provide full-time living places, it can develop respite care and "homes from home" for young adults with brain injury.
Peter, who has already gained the confidence to go out and rent himself a video, who has a girlfriend and who can invite friends and family in for a cup of tea or a drink, is sanguine about the efforts being made in his name. How does he feel about the fact that his family have gone to the effort to try to create not just a home for him, but a model which could - and should - be repeated throughout the State? "It doesn't overimpress me," he says. "They are intelligent people and to a certain extent it's what I would expect of them." And he's right - a safe, nurturing place to live is what we all should expect for people with brain injury, and what they should expect of us.
• Contact the Peter Bradley Foundation at 01-2804164, e-mail info@peterbradleyfoundation.ie, website www.peterbradleyfoundation.ie. Write to Anvers, 70 Adelaide Road, Glenageary, Co Dublin