Saturday, 28 May 2011

28th May 2011

we think our work starts now. We're having a lot of problems with Steven. Wednesday evening we had a full-on emotional crisis, where he went ballistic, and needed 4 nurses and me to calm and hold him down. All it needs is a wrong word in the wrong place and Steven gets hypercritical, and this is what happened. I was trying to talk a little sense to him due to his general attitude to everyone, but he wouldn't take the advice, saying that it's everyone else’s fault. Basically he has no social skills whatsoever, despite his strangely increased intelligence. He can put forward reasonable arguments on almost every subject, but does it without emotion. Strangely, he talks completely different to his girl friends, and is a really pleasant. So.............he has the body of a 26yr old, the intelligence of a grown-up, he talks almost like a 12yr old child, but seems to have the emotions and tantrums of a 6yr old, work all that out, and hopefully you'll see what we're up against. The doctors explained it very cleverly, they said, "Can you tell Steven to run now?" I of course replied "No". The doctor then said basically, that just because Steven's body is reacting very well, it doesn't mean his brain is improving at the same rate. All those nerve endings are still connecting. Steven cannot discriminate between emotions, this is why he's fine with his girlfriends but not with us or anyone else. Steven is pushing the boundaries of control as would any child. If you tell a child not to touch a hot object, chances are the child will touch it. This is the way the child learns. Steven has got to learn the same way. He will make mistakes, and eventually hopefully learn from them. When I saw Steven’s doctor, I was in a real state myself because of my lack of experience and understanding as to what’s happening to Steven. I stayed with her for one hour, which was a non-scheduled meeting, so I must have upset her schedule that morning. Later that day Steven was angry that I had spoken to his doctor. It’s difficult to explain, but we all cry most days, sometimes with happiness that Steven has done something different whatever it is, other times we cry through frustration and anger at what we’ve been put through. After my conversation with the doctor, she must have formulated a plan of some sort, because on Friday afternoon, Steven came out of physio’ carrying the doctor’s report which we’ve seen many times. It seems he was given this report so that he could realise why we’re so careful and protective of him. Steven was so upset, because for the first time, he’d seen evidence of what an awful state he was in. The report is far too complicated for my limited Spanish, and I can’t trust the Google translator with such a large document. I just hand it in to Solicitor etc. For the first time even we were surprised at the report’s contents. Steven died once at the scene of the accident, he died 3 times in the ambulance from Torrevieja to Benidorm, and he died again once more at Benidorm. We were never told this, or we were in too much of a state to understand the enormity of it all. Further to that, we have learned of extra injuries. On top of what we knew, he also suffered a broken jaw, fractured left elbow, collapsed stomach, and most of his back and shoulder muscles on the left side were dislocated. His jaw and elbow are like his ribs, they can’t be put right by dressings etc, they have to get better themselves. This all helps us all to understand what’s happening to Steven. The broken neck, the broken jaw, and the moved muscles all explain his difficulty in moving his neck, and why it’s difficult for him to speak. He is trying so hard to get better, but his brain and body are against him. I think it’s going to take a lot of physio’ to get him back together. Ref’ the broken neck, the break was one of the outer bones, away from the spinal cord which was broken, but that’s where muscles are attached, no wonder he has problems. He is getting limited movement in his left foot, but if he curls his toes under his foot, it becomes painful. Most of his pain now comes from his hip. But I’m sure the more exercise he does, the quicker these pains will go.
Best regards, Terry

Monday, 23 May 2011

23rd May 2011

A busy week for all of us. Monday Pauline and I returned to Torrevieja in the hope of sorting out Steven’s pension after being passed from office to office for several weeks. The lady at the Social Security office was very helpful. Apparently because Steven is in hospital receiving a bed and food he’s not entitled to a pension. As soon as he is discharged from hospital he will be assessed as to his capabilities, and any entitlement to a pension will start then. This all makes sense, but it would have been much better if one of the previous 7 people had told us that, to save us all the form filling, telephone calls, and travel involved. When this was done Pauline and I took a well earned break in Benidorm, half board in a hotel, our first break for over 6 months. A good holiday, not that playing bingo did us any favours with other people on our table winning, and us going home with empty pockets. No cleaning, no cooking, no washing up for 3 days, wonderful. We returned to learn that Steven had had an operation on Tuesday to remove his feeding tube. We have been waiting for this for several weeks, this will make Steven feel better, not having an usused plastic tube hanging from his stomach. The operation wasn’t a problem, but Steven said that the anaesthetic drip in his arm was painful. Thursday evening, by prior arrangement I collected Andy from Alzira. Andy is walking from Rome to Ronda to raise funds and awareness of disadvantaged children in Andalucia. He visited Steven, before going to our rented house for a meal. We returned for time with Steven. It’s the likes of Steven which is the focus of his charity, and Andy was pleased to see the recovery in Steven. It was during this conversation that Steven described how he really felt. He said that he knows he’s getting better, and he knows that his intelligence and memory seem to be okay, but he feels that his body doesn’t belong to him. A very strange thing to say, but makes sense, if his brain has been re-booted. He has to mentally tell every part of his body what to do, learning everything all over again as would a child. Andy left Friday morning to continue his walk south. Friday morning Pauline and I were summoned to the hospital during Steven’s physio’ session, to be shown how Steven was to use a walking frame. Similar to a zimmer frame, but smaller. First I had to learn how to put on a support “boot” to Steven’s left foot, with a complicated arrangement of Velcro straps. Then Steven proceeded to walk the length of the waiting room and back, about 50yds, it was good to see this. Steven has been practicing in the physio’, and was now being allowed to walk with us. That evening we took the frame to Steven’s room in order that he could walk whenever he wanted, which he did several times over the weekend. He walked around the hospital floor, a total of about 100yds each time. He takes his time, it makes his muscles ache, but he’s determined to do this. He continues to dress, undress, and wash himself, and when his feeding tube “hole” has healed, he’ll be taught to shower himself. However although his body appears to be healing well, we’re having concerns about his head. There’s no doubt he has retained or even bettered his intelligence, but he still seems to have the mentality of a child. He seems to treat us, his carers, as children, none of us can do anything correct. What is done for him one way one day, sometimes has to be done a different way another day. He’s very abrupt to the point of rudeness when he talks to anyone, including us. If he doesn’t get his own way, or sees us apparently objecting to what he says, even just by a simple facial expression, he gets upset, and sometimes angry. Saturday morning was typical of this, when Steven was very abrupt answering Pauline’s questions about toilet, clothes, and food. All this started because earlier I had put his socks on wrong, even though I hadn’t finished doing so. We were told a long time ago, that when things happen like this, we have a choice, do what he wants, or ignore him. We feel it’s best to ignore him when he’s in such moods. Steven was even told by a nurse that he seemed angry when he spoke, and asked us if that was true, we told him it was. Steven has every right in the world to feel angry at what’s happened to him, but we cannot allow ourselves to also become ill with worry. By Sunday evening Steven’s attitude had changed for the better, and we enjoyed an evening watching a dvd and eating left over Easter eggs.
Best regards

Saturday, 14 May 2011

14th May 2011

An interesting week or so. We don’t know what’s happening with the doctors in physio’, but there seems to be little in the way of encouragement for Steven. He was actually told that he had learning difficulties and couldn’t speak Spanish. This was determined by him being unable to do simple arithmetic, and some obscure spelling tests. But Steven didn’t finish his schooling for a variety of reasons, but has had plenty of learning in the school of life. In any case he hasn’t come here to gain a degree, not increase his education, he’s simply here to work hard at getting better. This he’s doing with the help of doctors and physio, but sometimes their methods are bizarre. A simple “well done” would work wonders. On Thursday 12th May, whilst waiting for Steven to come out of physio, the doors opened and I saw Steven slowly walking with a walking frame, otherwise unaided, to cheers from the waiting carers who also saw him. Steven hasn’t complained of any of his old pains for several days, only the pain of exercise which he’s used to and doesn’t mind at all. It’s wonderful to hear him say that his left foot is itching, surely a sign of returning feeling. His movement between bed and chair is getting easier, sometimes with very little supporting help. His walk is still a shuffling motion, but he is gaining more confidence in his abilities. He can wash his own hands and face, he can shave, and he can partially dress and undress himself. He can bend his left knee to his chest with only a little discomfort to his hips. He hasn’t been taught to wash and shave, it’s through his own determination and our encouragement. We are refusing to use the feeding tube in his stomach, due to that fact that he’s had 6 recent infections, and we have asked for it’s removal. Apparently it’s protocol to have the feeding tube there, in case he chokes or develops lung problems, but at no time has a doctor ever used a stethoscope to listen to his chest to see how he is. And, he is still being fed fish which has choke inducing bones!! We wish that these doctors would sometimes think out the box occasionally and give us some credit or even trust to use common sense. He now takes his medicine with thick water, no problems. We still continue to feed him with fresh food provided by his Mum, rather than the constant supply of fish at the hospital. Pauline and I are returning home next week due to problems with the Social Security office, and have decided to have a 2 day break in Benidorm, our first break in 6 months. We return on Thursday to accommodate friend Andy who is walking from Rome to Ronda to raise awareness of disadvantaged Andalucian children. (
Best regards Terry

Monday, 9 May 2011

9th May 2011

Another excellent week, where Steven has learnt to shave himself, wash his own hands and face, and move between chair and bed with some ease, sometimes by him just having a hand on our shoulders. He still has mobility problems, mainly shuffling of feet, but these have been helped a little by him feeling his muscles move on the front of his left shin, and top of his left foot, and also very slight movement of little toes on left foot. All small stuff, often resulting in tears of happiness, but an improvement none the less. Think about it, why should a person cry, just for being able to wash his face, amazing.
Still not sure what’s happening to his head, because he speaks fluently in English and Spanish, often using new long and complicated words and phrases that we’ve never heard from him before, apparently above his normal intelligence level, and yet he speaks with the voice and mannerisms of a 10 to 12yr old boy. Very strange. It’s this apparent naivety which has obliged us to take a Power of Attorney over Steven’s life. That was fun and games that was, we had to prove that we were Steven’s parents, by having birth and wedding certificates officially translated into Spanish, and then be interviewed by a Notary official. We were really made to “jump through hoops”, and the only thing we haven’t done is give blood for DNA testing.
Myself and Pauline have just spent 4 days at home, leaving Paul in charge. We went home to speak with solicitor, Social Security, and the Police. We received a lot of information, much of it favourable, and some, downright crazy. For example, to assess Steven for any pension he may be entitled to, he has to be assessed in the area he lives, but that’s impossible due to his current condition and location. We’ve made further enquiries and have to return home again next week to try to resolve the issue. We also learned that it takes 18 months to be issued with a disabled parking permit? Where can the application form be for 18 months, how many people are going to see it in how many offices? We expected fill form in, hand form over, receive permit!
Paul took Steven out one evening for a coffee. No problem with movement between car and chair, but at a cafe, many people of different ages, sat and stared at him making him feel very uncomfortable. Otherwise, Paul said there was no depression, far from it, they had a good time together. The only real downside to the week is that Steven has yet another infection in his stomach feeding tube. That’s the 6th infection. We haven’t used the tube for several weeks for that reason. We’ve asked that the tube be removed, but we’ve been told it must stay there, and will in fact be replaced with another one next week. It seems that the doctors have no confidence in our ability to care for Steven correctly. We’ve been told that the tube must stay there for the intake of liquids, because liquids through the mouth may seep into his lungs, and yet in all the time he has been at the hospital he’s never had his lungs listened to! If this tube was removed, it would be a boost to his morale.
I have been told by my own doctor that I must have my gallstone operation and not delay it any further, and might as well have the operation here and share a room with Steven. That’ll be fun! So that will have to be sorted this week.
There have been a couple of unsavoury characters attacking the Stevens Diary facebook site. I was warned that this could happen so it’s come as no real surprise. It’s a feature of many forums, and even genuine sites like this have no defence. It was hoped that the setting up of this site would show some awareness of brain injury, it’s symptons, and the possibility of a miraculous recovery. Presumably these people and their loved ones are immune to such a problem. Why these people join, or be invited to join, I have no idea. The actions of the few will not undo the efforts of the many. Fortunately there are plenty more decent supporters out there. I will tell Steven this when he’s recovered, in the meantime I’ll just ignore them for the ignorant, selfish vermin they are.
Best regards Terry