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Story 2 - The OT arrives

Occupational therapy assessment of brain injury

When I got the referral to work with Barry initially, I had just moved into Rathnew. I was in my first lecturing position and felt the need to maintain contact with the clinical side of brain injury. The referral for Barry came from the principal of Ashford Polytechnic, to advise on the art programme which Barry was doing there. I was the obvious person to ask to do the next Occupational Therapy report for Barry, which was the big one, the 1995 assessment for Complex Personal Injury. I went into overdrive to ensure that I did justice to this report. I took the opportunity to spend real amounts of time with Barry, organising for him to stay overnight in the flat at the Polytechnic in Rathnew, going for walks with him, watching videos, arranging visits and visiting him at his own home.

There were things that happened during that assessment that seem kind of funny in hindsight, but I found them unnerving at the time. For example, when we were going around the Botanic gardens together he dropped his spectacles. He did not know where we had just been, and when I finally found them on the pavement they were crushed. He was upset and instantly needed to phone his Mum. I felt inadequate because I could not console him, but Margaret reassured me by saying that she felt that he was in safe hands, the first time she had felt that he was safe away from her since he had the injury.

We stayed overnight at the flat and we watched one of the videos which is used on the ‘occupation’ course – ‘Benny and Joon’. This is a film about a brother and sister. Benny’s life is ruled by the responsibility which he feels for his sister, who has some unspecified mental health problem. He has a variety of housekeepers, who are also responsible for minding Joon, while he is out at his work. One day, Joon ‘wins’ someone’s nephew as a prize in a game of poker. This is Sam. Sam is an illiterate, who dresses and acts like Buster Keaton. He does the housework in a way which perplexes Joon to begin with, but captures her interest. He is sensitive to her and as they fall in love he tries to deny the fact of her mental illness. This is impossible, but finally by taking the illness into account they can begin to cobble their kind of life together. In the meantime, much of the drama of the story is given by the account of Benny’s struggle to let go. He loves her and is quite right not to let go initially. He needs to know that Sam really does understand her……and at the end it is clear that the responsibility he has for her has changed it’s form, but it has not gone away. At the end of watching it together, Barry said that what he needed was his own Sam, except not a bloke, if I knew what he meant. I did. He was quite right, he needed a ‘Sam’.

We had scrambled eggs for tea. Barry made them, but it took such a long time that they were completely cold by the time they got to the table. It took him a long time to realise that the cooker was not turned on, and it was difficult to figure out all the steps of the task, even though we had just gone over it. When he was cracking the eggs, one of them landed in a drawer which was open. He just closed the drawer with his knee and ignored it altogether. Afterwards he did the washup, but he was so tired that it took him an absolute age. I made a video of the entire process, since it was a part of the assessment. Finlay, my 3 year old, is in that first video and now Finlay is 7.

The next morning, before I went down to my office, since we were staying in the Polytechnic motel, I tried to get Barry out of bed in the civilised kind of way that you do with relative strangers. I knocked on the door, went in, left him with a clock which was set and reminded him that he had an appointment, for which he had to call a taxi.. Left alone, he called the taxi but then failed to get ready. This was repeated twice before he finally got it, without having had a shower or breakfast. He got to the address, paid the taxi and was immediately and hopelessly lost once inside the building. By now, he was very, very late for his appointment, but I had stayed in touch with the guy who was expecting him. This experience began to give me a better appreciation of how much his mum was doing to get him out the door in the morning on time for his appointment.

I continued to write occasional reports for the insurance corporation about Barry as his case moved forward slowly. Eventually Barry got the full 24 hour care package and he moved down to Rathnew, into a rented house. In October 97, Barry moved to his own house in Friars Hill and the team came with him, including paid flatmates. There was no structure to his day, except for Physiotherapy appointments at the gym, twice a week. Carers would do an six hour shift from 8.30am and often they would spend a whole shift trying to get him out of bed. Once he was out of bed it normally took him 2 - 3 hours to get ready, even with cueing and help with his breakfast. Therefore, if they succeeded in getting him up at 11am, he might be ready to go and do something by 1.30pm. Their shift would stop at 2pm, at which stage it was intended that he would have some 'chill-time' to himself, this would involve going back to bed again. Another facilitator would come on at 5pm and the whole story would be repeated. This time Barry might be ready to go out at 7pm and he was certainly never ready for bed before midnight, in fact he would regularly see the dawn in. He was completely erratic for the first year of his move down to Rathnew and there was no obvious way of predicting just what time he was going to get up. It was impossible to get any programme running for him during this time and facilitators would make endless plans which never worked out.

I began to work with him as coordinator of the care package in January 1998, when these stories commence.





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