DCSIMG

20 years of ‘devastation’ and ‘progress’ for Limerick woman with brain injury

Margaret Mangan with her daughter, Sinead, who has been suffering from an acquired brain injury since 1993. Sinead has been availing  of Acquired Brain Injury Mid West's residential services for a decade this year, after 10 years without proper facilities. Picture: Dave Gaynor

Margaret Mangan with her daughter, Sinead, who has been suffering from an acquired brain injury since 1993. Sinead has been availing of Acquired Brain Injury Mid West's residential services for a decade this year, after 10 years without proper facilities. Picture: Dave Gaynor

 

FOR 10 years, Limerick woman Sinead Mangan and her family were in limbo after she suffered a brain injury in 1993, as there were no facilities to treat people with acquired brain injuries back then.

After 10 years, Sinead was finally able to go through the first few stages of her rehabilitation when Acquired Brain Injury Ireland set up its Limerick office in 2003.

To celebrate ABI’s 10 years in the Mid West region, Sinead’s mother Margaret Mangan reflected on her daughter’s 20 years of hardship and hope.

In 1993, when Sinead was 18-years-old, she became “very ill” as a result of an overdose on asthmatic medication and ended up in hospital for a month.

However, it took her five years to be diagnosed with an acquired brain injury, which caused “devastation” for the whole family as they had no help from any experts.

Margaret added that the HSE made no commitment to Sinead’s case until ABI was established.

“We were devastated. When she came home, we didn’t know what we were dealing with. We had to teach Sinead how to wash herself and retrain her. We had no help, so we just carried on. The five years of not knowing was the worst. We wanted to get her diagnosed, but we didn’t know who to go to. We weren’t even getting much advice from our family doctor.

“I had to go look for help myself and find out what kind of people I needed. I was taking little footsteps every so often to get decent information, but there was nothing out there. The HSE didn’t commit to anything until 11 years ago, which was when we heard about ABI,” she said.

Margaret told the Limerick Leader that it was a weight off their shoulders when they were introduced to clinical psychologist, Anne Marie Regan, who first diagnosed Sinead in 1998.

However, the type of facilities she recommended were not to be found in Ireland, only until ABI established its first base in Dublin in 2001.

ABI local services manager, Alan O’Connell, who was with Margaret to recollect the 20 years, said when the appropriate services were not available, clients were wrongfully put into nursing homes.

He added that this still happens, due to the fact that grieving families are not aware of the services available.

This is what happened to Sinead as, even after her initial diagnosis, the only service they could avail of was in St Joseph’s Hospital, which was deemed unsuitable.

“She could do very little. She was in Bawnmore for a while, the intellectual disability service run by Brothers of Charity, but that didn’t work out because they didn’t know how to handle her. She wasn’t doing very much. When she was diagnosed, the only step was to take her to St Joseph’s Hospital. She was just a vegetable there, and I didn’t think that was suitable for her. I wanted to look for something else,” she explained.

But all the hard work paid off for the Mangan family when Sinead’s application to become one of ABI Limerick’s first residents was accepted.

As a result, the family could now experience “freedom” for the first time in 10 years, revealed the mother at the Limerick office on Ballinacurra Road.

“We would have went seven days a week to see Sinead. It was our life, seeing Sinead and looking after Sinead. But since she went to ABI, we’ve pulled back an awful lot. We have an awful lot of freedom to ourselves, but she has her own life too; she goes for coffee, socialises and has a better quality of life for herself.

“She would learn to make her bed, clean her bathroom, do her washing, learn how to cook, all the primary skills. It was slow, but she learnt to adapt to these things. It took about two years to acquire these skills,” she said.

Alan O’Connell, who has worked closely with Sinead since 2005, said she has developed both her behaviour and communication skills over the past few years, as her “bouts of aggression” have been minimalised.

“Up until a couple of years ago, it was the same three or four stories that she would tell you, again and again, and she would tell you them each hour. That was the only way she really knew how to communicate, whereas now she’s much more in the moment. She can tell you about things that are actually going on right now, the things that she has done today, and she is much more able to communicate on a normal level,” he explained.

Though Sinead has seen dramatic improvements since she became an ABI resident, Mr O’Connell believes that her future progress will be “very slow” and that she will not live independently like most clients.

“Rehab tends to be quickest at the start, so you get the most progress in the first couple of years. After 20 years, there will be progress but it will be very small, slow progress. Usually, with the model with our house, is that a lot of the clients would gain those necessary skills in the first two to three years and then they move on, usually to their own place. I don’t necessarily think that’s going to be the plan with Sinead. She could stay with us indefinitely and look at a different model where she has her own apartment but there’s staff nearby her, but I don’t see her living independently in the way that many of our clients will do,” he said.

Mr O’Connell said they rely on the HSE for their funding, as each resident would cost more than €100,000 to facilitate each year. He added that more residential and outreach services are needed to treat this issue. However, due to funding cuts and limited places, people on waiting lists are forced to go into nursing homes.

He said each brain injury is different and that the “path of recovery” varies in each case.

 

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