It is remarkable how often we can become oblivious to the problems of others, until such times as we are confronted directly with them. Such is the situation I have just experienced.
It is the story of two brothers and their love for each other; it is the story of patience, determination, and perseverance; it is the story of a tragedy which might destroy someone of lesser calibre. It is the story of John and his junior brother by one year, Robert.
Both were unmarried and living with their parents while they developed a successful trucking business; a business that commenced with one second hand truck and grew into six semitrailers. Following the death of their parents, they continued to live in their parent’s memory filled home. In November 1997 tragedy struck when Robert was performing an action that would have been second nature to him. While using a straining pipe to tighten the securing chain of his load, it slipped from it’s socket and struck him on the side of his head, causing him to crash to the ground, creating further injury to the other side of his head. Both injuries resulted in serious brain damage.
Robert was in Liverpool Hospital Intensive Care unit for ten days before being moved to the Neurological Ward for a further twenty days, then finally to the Brain Injury Rehabilitation Unit on Christmas Eve, where he remained for the following ten months. The final prognosis was that Robert was unlikely to ever walk, talk, eat, or swallow again and should be confined to a wheelchair in a nursing home. John was not willing to accept this view and felt that with the assistance of a sympathetic physiotherapist, even though he was still running the trucking business, with perseverance and loving care he could improve Robert’s status at least to some degree. By September 1998, Robert had achieved his first objective when he had learned to walk independently, even if only at a shuffling gait.
John reports that Robert’s prospects remained disheartening! Eating and drinking was extremely difficult and he had a tube inserted in his stomach for nourishment. He was incontinent and required full assistance in terms of personal hygiene. More importantly speech communication was virtually non-existent. John commented, ‘it was like dealing with a child’. Perhaps it could be more accurately expressed as ‘being confronted with an adult who suddenly transformed into the bodily functions and mental capacity of an infant.’
Just imagine what love and courage it would take to sacrifice your future in an endeavour to save your brother, with no guarantee of success. Thankfully, an amazing level of success is being achieved.
Apart from assistance by a very good friend and some early visits by a district nurse, John was left to experiment with how he could assist his brother and hopefully form some method of communication. John says that being in the family home assisted in Robert’s agonisingly slow progress. Amazingly, a whiteboard contributed to a simplistic form of communication between the two brothers and on rare occasions Robert managed to verbalise a few words. For example to Robert’s question ‘where are you going?’, John replied ‘I am not going anywhere’, hence this story’s title.
John soon realised that he was going to be unable to provide the absolute full care that his brother needed and still continue the trucking business. Sadly he had to sell their trucks. Nor could he maintain the family home, so in November 2011, together with Robert he acquired an independent living unit at Carrington, where he managed to gain the services of a government funded full time carer one day a week, supplementing John’s full time efforts.
The Carer was successful in encouraging Robert to join in some community activities, such as darts, draughts, and card games, even to have him to use money in paying for his lunch- a giant step forward in his cognitive progress. John often took Robert for long drives, satisfying the latter’s passion for trucks and driving.
Ever so slowly, Robert began to manage the limited basics of living, previously impossible without John’s intensive care, but he is still incapable of conversation. In January 2017 John became seriously ill and spent five weeks in Campbelltown Hospital. Fortunately, relatives and John’s good friend, with whom Robert was comfortable, were able to step in and look after Robert until John’s return. It was then that John realised it was time to place Robert in full time residential care where he might adapt to their procedures together with John’s guidance and support. John spends time with him nearly every day and often sits with him during meal time. Looking at the pair of them today, one can witness the success they are collectively achieving.
The action of Carrington in placing Robert in Grasmere Terrace Hostel is commendable. John believes, the environment has been beneficial in Robert being able to adapt to living with a range of strangers; something that was beyond his capability in earlier days.
I happened to learn about the pair, firstly, by dint of meeting John who told me much of the background of Robert’s misfortune and reading a description of the brothers written by Cheryl Koenig in the article she wrote for the New South Wales Health Department some years back. Secondly, I was allocated seating at the meal table adjacent to Robert, which enabled me to make my own personal observations.
At my first meal, staff advised that Robert had a brain injury, could not talk, and would alternatively ignore everybody or just glare at them. ‘Disregard him.’ I was told. After a few meals I noticed that that was exactly what everybody did. Robert would shuffle up to the table, seat himself, mainly look straight ahead and was ignored. John explained to me how Robert avoided strangers. That got me to thinking. Maybe he sees us as strangers because we don’t acknowledge him in some way; and the simplest way of doing that is to say hello and goodbye, as we arrive and depart the meal table.
So that’s what I commenced to do. After a relatively short time I supplemented my words by offering my hand, which initially he ignored, but later responded by holding out to me a crooked finger, perhaps as a pseudo handshake. At that point most coudl say he was glaring at me, but I believe it’s a stare, as he tries to place me. The latest I can report is that he now often nods to me, or offers the glimmer of a smile. Sometimes he even offers a full open hand, rather than the earlier crooked finger.
I am not sure I understand just what this, so far limited, response from Robert means to him, but it’s very nature suggests encouragement. Perhaps John is better equipped to express a view. Hopefully my example may set others to follow, although I hasten to add that approaches must be conducted with appropriate sensitivity.
I am writing this story because I was moved by it’s circumstances; because it warrants being told; and the bravery and love of brothers Robert and John be recognised. My sincere thanks is extended to John for sharing his brother’s misfortune with me; and allowing me to write this summarised version of it’s history.
I thank Les for his account of Robert’s story, confirm it’s accuracy, and agree to it’s publication- John Fenwick.