The World of Caring

By Tania Tillyer

It was a typical day following a typical night. How much longer will I be able to cope with the lack of sleep? I was exhausted and it was affecting my ability to do my job and to think straight. I need to make a change, but what could I do? I have been doing this for so long that I am used to it, it has become the norm, a way of life. I never begrudge doing it, but it was starting to have an effect on me. Only the other day I fell over in the bedroom, having got up at 3am. This was the 4th time I had been up to make sure my son was okay. Lord only knows what I fell over, I must have still been asleep because it happened so fast and before I knew it I was on the floor. My arm hurt and my legs hurt. I carried on; making sure my son was okay. I walked down the corridor and I could hear him shouting. Does he need me, did he need me to change him, was he too hot or too cold, was he in pain, does he need me to change his position? Action stations! I did everything that I needed to for my son and told him to go back to sleep and left the room. It was now 3.30am and I was trying to get back to sleep. He will settle soon I told myself, listening to him on the monitor. After about 15 minutes there was silence; he must have gone back to sleep. Let’s try to get back to sleep now. It was 4am and there was a noise from the monitor. Is he okay, does he need me? I listened more to see if he was going to go back to sleep. Now there is silence. Wait a minute, he is shouting again. He must be feeling uncomfortable and I must see if he is okay. Off I go, down the corridor to his room. Is he okay? I check him and reposition him to make him feel more comfortable. I leave the room. I get back into bed and adjust the covers. Right, let’s see if I can get some sleep. I must have because at 6am I hear my son again. Ah, at least he had a few hours’ sleep. I went in again, changed him and made him comfortable. After 6 I think it’s okay to put the TV on for him to keep him company. I can leave him for a while and try to grab a bit of sleep. Ah, he is now fully wake and thinks to himself, well if I am awake, you have to be too! He shouts louder; he wants attention; he actually thrives on it! I make some checks on my son and eventually I have to get up to go to work. I go down to my son and see if he is positioned correctly. I made some adjustments to make sure he is comfortable. I change him and put a clean top on him. I finish getting ready for work. Hi, I say to the carer when she comes in at 8.30am. What night did he have?, she asks. I tell her and say that if he is tired, he can stay at home because going out may be too much for him. She goes to his room and the day officially starts. I come home from work. I say to my son, “How are you, have you had a good day?” He smiles at me. His smile is the biggest and best thing and I think to myself, he is so lovely, when you come home from work and have been busy all day, how lovely it is to come home to such a welcome. He is looking for me and I say to myself, he is wondering where I am, he is saying to himself “my mum`s home”. We have dinner and the time for my son`s feed to go off has come. I disconnect his tube and I give him a flush of water. He is happy and will laugh at such ridiculous things such as the scraping of a plate, the cutlery being put into the drawer, the banter round the table and he will laugh. There is not much my son can do for himself; in fact he cannot do anything for himself. He is reliant on me for absolutely everything. I check if he is hot and take off his top as he is sweating. He smiles. Later, after watching a bit of TV and in my son`s case, listening to the TV as he is blind, we then go to his room to get him ready for bed. After an hour of getting ready he is in bed. He decides he is not ready to go to bed and his limbs get stiffer. I decide to leave him for a while to relax and calm down. I go into his room about 10 times between 9-11pm. Finally, he is restful and is sleeping. My head hits the pillow and I think bliss, lets get some sleep. I am dropping off and then I hear a sound. Does he need me, did he need me to change him I thought, was he too hot, was he too cold, was he in pain, does he need me to change his position. Action stations….Nearly 30 years, that’s how old my son is. He is quadriplegic and needs everything doing for him. 30 years that I would not change. I love my son, more than words can say. I want to care for him. I feel lucky to have him. As a family we are lucky to have him, he is a son, uncle, nephew, grandson and brother. My friends and family are lucky to know him and to be a part of his life.