Josh, who has had diabetes since he was 7, has never been well-controlled. During his teens the whole situation has been a nightmare, with up to 6 hospital admissions a year with DKA. He is insulin-resistant and I have to push him to care for himself all the time. His HBs are consistently over 10.
The current situation is so sticky I am at my wit's end. Josh is under the care of CAMHS, and has been since he started self-harming over a year ago. He's been taking antidepressants since January. With only 10% attendance in the Autumn term 2010, he was recommended home tuition in early 2011, but this didn't materialise until March and even then he didn't get an English tutor.
His school have suggested a year off before A level as his attendance has been so poor. However he needs to do 3 retakes this year to achieve the 5 A-Cs he needs to qualify to start A level next September. I signed him up to do these at a local college, one afternoon and 2 evenings a week. However he suddenly stopped going the week before half-term annd tells me he can't go but that he can't talk to me about why he can't. So I rang CAMHS and he started seeing a counsellor weekly today.
He has come home from the counsellor without discussing college but very angry about his DLA. He was refused DLA but I appealed and we have just had it reinstated. Josh has decided that the DLA is his money and he should be able to spend it. He tells me he wants to leave home and can finance this using his DLA + sickness benefit. He claims his counsellor supports him. This has hugely upset and worried me.
Quite apart from the fact that the sum wouldn't cover living on his own, Josh couldn't possibly live unsupervised at present. Only a fortnight ago he was rushed in by ambulance, semi-conscious, and spent 4 hours in resus before being taken up to the ward. He was very ill. This is the fifth time this has happened during 2011, though the most serious. What might have happened had no one else been around I hate to think.
One of the reasons he gives for wanting to move out is his older brother. He definitely has grounds for complaint. His brother is grumpy, often treats him very rudely and sometimes gets extremely drunk. When drunk he is a total pain to both Josh and to me. However the situation is complicated. His brother is also having a hard time with his own significant health problems and has no money at all, being 18 and still at college. So he can't leave home either, and given his health problems it would be a pretty poor idea anyway. Neither of them is mature enough to cope alone.
I am extremely worried about Josh's college attendance, his mental health and about his attitude to me. As his carer I am unable to work. I have a number of marketable skills, and if he were not ill I could be earning ?25,000 plus, and our whole family economy would be very much rosier. As it is, I am pitifully poor and frankly very miserable. When I tried to point out that his DLA is part of what keeps the whole boat afloat and that I can't just walk away from him, he just does a teenage strop and says he will move out so I can get a job. I have to say that the idea of him moving out is very frightening. I know the medical team would be as horrified as I am but I don't see how any of us could stop him if he were determined.
As things stand, Josh has stopped going to college - which means he won't get the GCSEs to allow him to go forward to A level and university (he is extremely bright and wants to do maths + sciences) - and this grieves me so much. He is very depressed, though he has stopped self-harming - and he is so angry that he's threatening to move out. He says that for me to point out that I can't work because of his health is unfair on him. He says I'm blaming him. I explained that no one thinks his diabetes is his fault, but that me being his carer is just a fact of life. I have also pointed out that if I could afford it I wouldn't need his DLA, but the fact is that he and I can't survive without it and in fact it in no way covers the additional costs his illness creates.
On top of this, having struggled through nearly a year with no Diabetic Nurse (which was terrifying at time) we now have one who says Josh is eligible for a pump in the New Year. At first I was thrilled but when I look at the reality - that Josh's behaviour is hugely self-destructive, that he's not helping himself and that I don't seem to be handling it successfully - I very much doubt he's going to be motivated enough to make a success of it. As I understand it, learning to use a pump requires commitment, and I don't know if Josh is up to it at present.
Obviously I will calm down eventually, but as I write this I feel despair. The financial side of disability is a dismal thing. My own life is so much affected - I long to go out to work every day, see other adults, earn money - but I accept it because Josh needs me. To be treated as the enemy is pretty devastating.
The current situation is so sticky I am at my wit's end. Josh is under the care of CAMHS, and has been since he started self-harming over a year ago. He's been taking antidepressants since January. With only 10% attendance in the Autumn term 2010, he was recommended home tuition in early 2011, but this didn't materialise until March and even then he didn't get an English tutor.
His school have suggested a year off before A level as his attendance has been so poor. However he needs to do 3 retakes this year to achieve the 5 A-Cs he needs to qualify to start A level next September. I signed him up to do these at a local college, one afternoon and 2 evenings a week. However he suddenly stopped going the week before half-term annd tells me he can't go but that he can't talk to me about why he can't. So I rang CAMHS and he started seeing a counsellor weekly today.
He has come home from the counsellor without discussing college but very angry about his DLA. He was refused DLA but I appealed and we have just had it reinstated. Josh has decided that the DLA is his money and he should be able to spend it. He tells me he wants to leave home and can finance this using his DLA + sickness benefit. He claims his counsellor supports him. This has hugely upset and worried me.
Quite apart from the fact that the sum wouldn't cover living on his own, Josh couldn't possibly live unsupervised at present. Only a fortnight ago he was rushed in by ambulance, semi-conscious, and spent 4 hours in resus before being taken up to the ward. He was very ill. This is the fifth time this has happened during 2011, though the most serious. What might have happened had no one else been around I hate to think.
One of the reasons he gives for wanting to move out is his older brother. He definitely has grounds for complaint. His brother is grumpy, often treats him very rudely and sometimes gets extremely drunk. When drunk he is a total pain to both Josh and to me. However the situation is complicated. His brother is also having a hard time with his own significant health problems and has no money at all, being 18 and still at college. So he can't leave home either, and given his health problems it would be a pretty poor idea anyway. Neither of them is mature enough to cope alone.
I am extremely worried about Josh's college attendance, his mental health and about his attitude to me. As his carer I am unable to work. I have a number of marketable skills, and if he were not ill I could be earning ?25,000 plus, and our whole family economy would be very much rosier. As it is, I am pitifully poor and frankly very miserable. When I tried to point out that his DLA is part of what keeps the whole boat afloat and that I can't just walk away from him, he just does a teenage strop and says he will move out so I can get a job. I have to say that the idea of him moving out is very frightening. I know the medical team would be as horrified as I am but I don't see how any of us could stop him if he were determined.
As things stand, Josh has stopped going to college - which means he won't get the GCSEs to allow him to go forward to A level and university (he is extremely bright and wants to do maths + sciences) - and this grieves me so much. He is very depressed, though he has stopped self-harming - and he is so angry that he's threatening to move out. He says that for me to point out that I can't work because of his health is unfair on him. He says I'm blaming him. I explained that no one thinks his diabetes is his fault, but that me being his carer is just a fact of life. I have also pointed out that if I could afford it I wouldn't need his DLA, but the fact is that he and I can't survive without it and in fact it in no way covers the additional costs his illness creates.
On top of this, having struggled through nearly a year with no Diabetic Nurse (which was terrifying at time) we now have one who says Josh is eligible for a pump in the New Year. At first I was thrilled but when I look at the reality - that Josh's behaviour is hugely self-destructive, that he's not helping himself and that I don't seem to be handling it successfully - I very much doubt he's going to be motivated enough to make a success of it. As I understand it, learning to use a pump requires commitment, and I don't know if Josh is up to it at present.
Obviously I will calm down eventually, but as I write this I feel despair. The financial side of disability is a dismal thing. My own life is so much affected - I long to go out to work every day, see other adults, earn money - but I accept it because Josh needs me. To be treated as the enemy is pretty devastating.
