At the moment, Jeff and I are quite capable of caring for our son and making sure that his every need is attended to, so the thought of us not being able to do that is very frightening. I know that I am lucky that I have someone else to help with the care and that makes it easier but I do not know what I would do if something happened to Jeff.
I suppose that it is inevitable that the day will come when Jamie becomes too much for us to handle and that he may well have to go into residential care. I really do not want that day to come and the thought fills me with such dread. I can imagine that many people feel the same. It must be one of the hardest decisions in the world. Jamie does take our lives over but we have accepted that and are coping so I have to put my blinkers on and try not to look too far ahead.
It tends to creep up on you at night when you are thinking or if you have had a bad day and you wonder how much longer you will cope. I have had days like that, especially when he has been violent due to, say, an ear infection and you feel despondent and think you can't go on. You do go on, of course, but it keeps creeping back and is always dormant in your mind. It just waits to come and haunt you again at bad times.
You think that he won't be as well cared for. You think no-one else could love him as much as you do. You think he will be sad and lonely. You worry about his health and wonder if his new carers would pick up on things like his signs of being in pain. All the small, but very important things, that need to be considered in looking after him, will they be taken into consideration? It is very difficult and there are many people in the very same situation, I am sure. I just hope we stay in good health and are fit to cope for a good while yet. I keep telling myself to think positive.
My brother, Robbie, who has severe learning disabilities, is 42. My mum had to make the decision to stop caring for him a few years ago. Mum has been a single parent to us and she coped well with him. He was a sweet boy and well behaved but life took its toll on him. Robbie was teased and taunted all his life. Children in our area said nasty things to him and he bad experiences when he got older and went to an adult training centre. He used to get really upset if he thought anyone was making fun of him and became an easy target for others to wind up. He always said he wanted to be ' normal' like us. He wanted to have a girlfriend and go to the pub and do all the things other teenagers do but he found it all really difficult.
To cut a long story short, he had a mental breakdown. No-one saw it coming as his behaviours were put down to his disabilities. He was really unwell, he turned violent and ran away from his ATC without having a clue where he was running to. He was found safe, thank heavens. The community nurse kept taking Rob into respite for breaks but mum just couldn't cope with his rages anymore and had to make the decision to move him into residential care. It broke her heart, she wanted to keep him home but he was too much and it would probably have killed her.
The story has a happy ending though, because Robbie is very happy in his new home. There are six residents and lots of staff and he lives in a bungalow. It is a wonderful place and he is so well cared for. Mum now thinks she should have let him move out ages ago because he is happy and thinks he is all grown up now. He still comes home for the odd overnight stay. He is kept busy and goes to the pub. He has just been to Spain with his carers for a holiday. We could never have imagined things would turn out so well. He is on lots of medication and he has bad days but, on the whole, he is content and settled and it is wonderful to see.
My mum and Robbie always come to us for Christmas and he is looking forward to it and he mentions it every time I see him. I don't like Christmas but it is nice to have everyone together. I find if very stressful (humbug that's me). I worry about Jamie and hope he will be well on the day as I have spent Christmas days in the primary care with poor Jamie having ear infections. Jamie loves Christmas too but he isn't interested in his presents, he loves lights and Christmas trees. Wherever we go, shops or relatives, Jamie will destroy Christmas trees in his excitement. I never sit down to lunch, I have to stop Jamie pinching everyone's Yorkshire puddings!
Jamie does find it all too much and takes Jeff upstairs to escape everyone. Poor Jeff, he feels anti-social but what can he do? Everyone usually goes home by 4o'clock and that's not so bad. Jeff has one day out a year. Boxing day is his dad's birthday and its a special one this year as he has been fighting bowel cancer. All the family go out, Jeff's brothers and sisters, their partners and all the grandchildren. Then, they go back to Jeff's parents for a little party. Jamie won't go so we stay home and let Jeff enjoy himself for that day. I have had to phone him a few times when Jamie has been ill but, on the whole, I cope and it is nice to spend time with Jamie and the girls. I worry about it a bit but Jeff deserves at least one day to himself. New Year is a quiet occasion in our house and it is strange but Jamie always wants to go to bed early on that evening. He is usually woken by revellers outside and gets up anyway.
It has been nice writing everything in a blog because it gets things off your chest and I will miss doing this. My poor driver, Eddy, has to listen to all my problems but, being a wise old man, he seems to have answers for everything and things don't seem so bad. He is quite philosophical and helps me see things in a different perspective. It is good to have someone to talk to who is impartial and helpful but not at all judgmental. Jeff is always there for me too but it helps to talk to people who do not live in our house. So, I have plenty of people who I can talk to and make me feel better and encourage me not to think too far ahead.
It is true that you don't know what's around the corner but if you have enough support you will get through it. I take comfort in that I have some wonderful people around me and, without having had Jamie, I may never have met some of them. So, to those of you that support me, you all know who you are, I would like to say a big thank you to you all.