Some Nimbin News readers may remember a drug overdose case a few years ago, where health workers desperate not to waste time started to resuscitate the person on the street outside Nimbin Hospital. On the other hand, it's such a common event these days that for people who didn't know Paul Childs he was just another OD on the growing list. And this guy didn't even die! So he was lucky, right? right? Two years ago Paul Childs had an accidental drug overdose and was resuscitated at Nimbin Hospital. Having no oxygen in his brain for twenty minutes or so left Paul permanently incapacitated. He's bedridden, incontinent, can't talk properly, move himself eat, read, play with his little son, or do any of the other things he used to think made life worth living Since that day Paul's family Andree, Cheyenne, Coral Chris, Flame, Lake, Felicity, Dain, Rubin, Dael Joan, and his friends way too many to list, have learnt more than we ever wanted to know about brain damage All our lives have been changed forever, Paul's most of all He has been in hospital ever since Now, all we are able to do is make Paul's life better in small ways We take him out on walks in a wheelchair, decorate his hospital room with posters and mobiles and crystals, bathe him and groom him with love, provide him with clothes and toiletries and flowers& We take him home to visit as much as we can& but let me tell you the story from the start Living With Brain Injury: One Hospital After Another Paul was transferred to Intensive Care in Lismore Base Hospital and diagnosed, as in a vegetative state" There was, no response from Paul. Medical staff asked if he could speak, squeeze a hand even blink His eyes were open but they saw nothing. Paul became semiconscious some five weeks after the accident. He began to respond to questions, very slowly, with his eyes it could take several minute for him to move his gaze towards the person speaking. (Paul s vision has also been damaged). Two Years of Struggle. Paul was flown down to Ryde Hospital in Sydney to have his trachea removed. This balloon in his throat had prevented him from drowning in his saliva while he was unconscious and not swallowing, but with a trachea' in place, a person can't eat or talk. Before they could remove it they needed to control both the amount of Paul s saliva and his epileptic fits, which took six weeks of adjusting his medication. Back at Lismore Base, Paul's family started to realise how hard it would be to get assistance for him. Paul's condition was considered too poor for him to be eligible for rehab. Paul scored very low on the Glasgow Coma Scale, a 10-point assessment of brain injury used by hospitals to judge whether a person can be rehabilitated. Paul was now able to make sounds; most often, frustratingly not distinct enough to understand, but sometimes words would be loud and clear. One phrase he made a point of saying to all of us was "Love you", and when we were there in a group, "Love you all". We didn't know it then, but this was as clear as Paul's speech would get. Tragically as Paul's mouth muscles have been used less, not eating, not talking they have deteriorated further. The Rehabilitation Race Because Paul is in the category "the high end of high level care", no hospital was keen to take him. When the brand new well equipped Rehabilitation Unit at Murwillumbah Hospital agreed they would give him some rehabilitation, we jumped at the chance. Before they would agree to take Paul in, he had to have family living locally. So three of Paul's family members moved there to live. We arranged for at least one of us to be present for Paul's physiotherapy sessions in the morning, and to work with the speech pathologist in the afternoons. At this stage Paul was confused and bewildered. Though we had explained where he was going and why, it seemed that Paul hoped he was going home when he left Lismore in the ambulance. He was very distressed to find himself in yet another hospital. We explained again why it wasn't possible for us to take him home to live, but Paul either didn't comprehend or didn't believe us. Unfortunately, Paul wanted to talk. He did not want to try the speech pathologist's alternative methods of communication. He couldn't grasp why no one could understand him. He got frustrated when we guessed wrong, but he wouldn't repeat himself, or try one word at a time, or use "Yes" and "No" to help narrow it down. He started telling people to "'uck off!" a phrase which came through every time, no matter how mumbled! He started to yell at people, mostly incoherent angry noises. Sometimes intelligible words came through, from the heart breaking "Kill me, kill me", to the equally distressing "Home, home now". Then, when no one would take him home, his tragic conclusion was "You don't love me". For a month Paul was given physiotherapy every weekday morning, and some afternoons. The wonderful physiotherapist and her assistants concentrated on helping Paul learn to move his arms and legs. If he could roll himself in his bed he would be less likely to get bedsores, the painful ulcers that affect many bed bound people. If they could help him to sit up Paul would be less vulnerable to pneumonia, which he had already suffered several times in the six months since the accident. Uncontrollable Anger As Paul gained some movement in his arms and legs, his frustration was expressed through trying to hit people, or sometimes kick them especially anyone who laughed around him. It seemed he felt they were laughing at him. On the other hand, if anyone cried that would also upset him. He started spitting at people. He developed a horrible glare - the basilisk stare we called it to ourselves. He directed it at one physio worker in particular, a bloke who was full of jokes and funny comments. The doctor in charge of the Brain Injury Unit didn't take Paul's anger lightly. She lectured Paul, warning him that if he didn't control himself she would not keep him there, as she could not risk her staff being hurt. We don't know how much of this ultimatum he understood, but he knew she was angry with him. He was distressed and even more unsettled when she left. Some days were very hard, and this was one of them. A Compulsory Move At the end of one month's rehabilitation, the doctor told us that Paul wasn't improving fast enough to be worth keeping in the unit. The bottom line ($$$$) meant his bed had to be used by someone who would be able to get better eventually. She agreed that Paul was making some progress, but it was not fast enough to look good on their books. Just in case the family got the crazy idea that Paul could be cared tor at home, she spelled out the difficulties involved. She emphasised the cost, the risks, and the lack of support available for home care at the level needed. Paul's 'food' alone is $30 per day, quite apart from the pump that puts it into his stomach! His medication is expensive too. Adult nappies cost a couple of dollars each. Still, it is not the cost that makes it impossible to take Paul home, but the 24-hour nursing care he needs. She brought home to us all that Paul was going to be in hospital for a long time, and we should be looking for a nursing home that would take him permanently. Flame, Lake and Andree started looking. To start with we hoped to get a place at a home for young people, as Paul was only in his early forties. However, we found the demand for a bed greatly exceeds the supply. Meanwhile Murwillumbah found a hospital to take Paul temporarily; it proved to be Mount Olivet in Brisbane. This is an old and crowded hospital below the Story Bridge in Kangaroo Point. Paul was crammed into a ward with some seriously ill and dying old people. It was the hottest part of summer but the hospital had no air-conditioning. Needless to say, there was no rehab for him here. Finding a nursing home that genuinely cared for their patients was difficult enough. Finding one that had some bush around it was just about impossible. No wonder we felt like jumping for joy when Canossa said they would take him. Paul on the other hand was not excited, but closed his eyes for a couple of days "possuming" as we call it. How Paul Moved to an Old Folk's Home Thirty Years Early Paul now lives in Canossa Nursing Home in Oxley, Brisbane. It's a Catholic old folk's home with a hospital section attached. The standard of nursing care is very good, and he is physically well looked after. There's no speech therapy supplied, but Paul does have a physiotherapist providing "maintenance exercise". This involves 3, 10-minute sessions a week. What Keeps Paul Alive? There are two sides to Paul's life these days. There's the hospital side; all the machinery, medicine and care that literally sustains him. Then there's the human side; the love that every human being needs to feel in order to keep living. In Paul's case this love seems to be expressed most clearly in the outings, and especially the home visits. These give Paul something to look forward to, to break the tedious routine of bed bound life. First, the hospital side. Paul is fed Jevity; soy based "total nutrition" liquid, through a permanent tube inserted in a hole cut in his belly. The medication he needs, for example to control the fits resulting from his brain damage, is crushed and given in the same way. Paul is incontinent and has to wear adult nappies, which are changed by the nurses three times a day. The nurses bathe Paul every couple of days. He enjoys this when Andree does it. He'll frequently let her spray away for an hour or more, while he lies there luxuriating in the warm water flowing over him. Next, the personal side of Paul's life. What keeps Paul going from a emotional point of view? Chiefly, Paul's days are spent lying in his hospital bed, mostly sleeping or dozing. At times he seems to stare at the wall with as much interest and concentration as the TV. He cries a lot. Sometimes he is pleased to have visitors; but often he shuts his eyes and pretends we're not there until we go away. Now and then, he'll even yell "Go away", "Go now" or the, infamous "'uck off', and we'll leave. Though Paul's family and friends are sure he understands us much of the time, it has been mostly one way communication; he tries to talk, but his words come out as an indistinguishable mumble. Ironically, it's that swear words that are easiest to make out, and yelling makes them even clearer. Once in a while Paul will say a few words that we will all hear and understand. When a couple of us are visiting Paul together, we always offer to take him outside. The grounds at Canossa are unusually large; they have a picnic area and children's playground, and they also keep birds there. It is great to be able to take Paul outside to sit under trees and watch the birds go by. Particularly, he often likes to watch Cheyenne rampage up and down the slide; and climbing tower, Home, home now Paul's nursing care is subsidised under an Aged Care Package. The hospital takes 85% of his Invalid Pension payment. (The remaining few dollars are supposed to cover all Paul's other requirements.) Paul is not allowed to stay out more than 52 nights per year, or the hospital's funding for him stops. Andree takes him home the one night a week that is allowed, and we think it is very important to Paul. The lengths of the visits have stretched, as Paul's condition has slowly improved. What started as two to three hours at home, when we were in Murwillumbah has extended to all day Thursday, overnight, and back to the hospital late Friday. It is exhausting both for Paul and his carer(s), beginning with lifting him from his bed into a wheelchair (a two-person job) and taking him home by Maxi Taxi. Paul needs a wheelchair ramp to get into the house safely when he gets home, Paul needs to be untied from the wheel chair and lifted into the bed. Lately we have had the use of a hospital type bed, which we can wind down to wheelchair height and wind back up. Because Paul can't position himself in bed, he needs to be turned and moved frequently, and occasionally gets himself caught in the bars of the bed. He has kept his weight up well since the accident, which is good. But, it means he is heavy and awkward to move. Paul is fed when he's at home by the 'bolus' method. This means pumping his Jevity, and medication through his tummy peg using a giant syringe. This is a fiddly and a time consuming process, and a messy one if the tube comes off the end of the syringe, it spraying sticky Jevity everywhere. Not infrequently Paul throws up his meal. Then it can take an hour to clean and change him and the whole bed. At the end of the procedure Paul is exhausted, we are not much better. Naturally this consideration fades into insignificance compared to the concern we feel for Paul's distress. Paul is washed in bed while he is at home. Changing his pants can be a real struggle, nothing like changing a baby. We've found adult size aloe vera wipes are very useful here. They are impregnated with a soothing lotion that relieves the inflammation on Paul's burnt skin. Even dressing an adult in T-shirt and shorts takes quite a knack and Paul's clothes are very stretched around the neck and arms. To sum up, the 'nursing' side of home visits is tiring and stressful, but the emotional side can be even worse. What makes it worthwhile is the pleasure Paul gets from these visits. When we have a 'good visit' where everything goes smoothly, it is very hard to take Paul back to the hospital. On these occasions it seems so easy to care for him and so right for him to be at home. This is when we most envy Christopher Reeve! Of course we have sympathy for his condition but, oh! For his special wheelchair and lifter and access to therapists whenever needed. Oh! For round the clock private nurses! This is the only time we see him smile these days not that it happens often. Just often enough for us to know it's worth doing. All the things Paul has gone through have been typical of brain-injured people. We've gone to support groups and found so many others learning the hard way and struggling with the same problems. In Queensland alone the number of brain injured people needing nursing home care is increasing by nearly 10,000 per year. It certainly feels like we reinvented the wheel to get to this point, and we have a long way to go yet. The only way Paul is ever likely to live 'at home' again barring a Lotto win is in a group situation. We have heard of other families achieving this lobbying for 'individual funding packages' and pooling their resources. They got half a dozen severely brain injured people housed together, sharing fulltime nursing care. I just can't imagine how they found the time and energy to do it. On the other hand, some families struggle tor a year or more to write a submission for private funding, and are turned down. This is a heartbreak we're not ready for yet! There are lots of obstacles, and one of them is lack of money. Clothing, personal toiletries, Maxi Taxi fares, a private speech pathologist's fees, etc., etc., have been provided by family and friends. Paul needed a TV with a larger screen, because of his damaged eyesight, and his daughters bought one for him. Local insurance organization the Paraplegic Benefit Fund generously provided more than $800 for Paul's own wheel chair. Next on the list is a lifting machine, so Andree can bring Paul home without needing other people, and move him in the bed easily. (It's very easy to hurt yourself trying to move someone who weighs more than you do!) These wonderful inventions cost two thousand dollars. An extra couple of hundred would buy an electronic control; so one person can operate it from any position. As I say money is a great obstacle for us. Click Here to Email Andree

 Q U E S T I O N    E V E R Y T H I N G    T R U S T    N O T H I N G    B E L I E V E    I N    Y O U R    I N T U I T I O N