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
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