# Worried to death about 16 year old son



## Writehand (Nov 7, 2011)

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.


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## Copepod (Nov 7, 2011)

Welcome Writehand - you really have got your hands full. 

A lot of the financial situation depends on Josh's age and education status - if you have a welfare rights advice centre nearby eg Citizens Advice Bureau, local council welfare rights unit, then they're the best people to advise about the whole situation. I'm guessing that if he's on Middle rate Care, then you also get Carer's Allowance? Rather than answer here, welfare rights could give confidential & expert advice. 

I wish the best for you all - hope that CAMHS councillor and diabetes team can work together with Josh and you to make progress. 

Ypu may already know about CWD, but many parents on this board have found the "Children With Diabetes" email group very useful - as long as Josh doesn't find out and feel offended by the word children - http://www.childrenwithdiabetes.com/uk/


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## margie (Nov 7, 2011)

I hope that by expressing how you are feeling it has helped a little.

Try not to worry too much about the pump - from what others have said you have to be psychologically assessed to see if you are ready and able to use a pump. Trust in their assessment. 

Have you spoken to your Dr about your feelings, as well as looking after Josh, you sound like you are grieving for the life you would like to live. Would it be possible for you to work part time whilst Josh is at college, at least then you may get some friends and some of the old you back.

I really hope that you can find a solution to some of the problems you face.

{{{{}}}}


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## Pumper_Sue (Nov 7, 2011)

Hi Writehand,
                 welcome to the forum. I'm so sorry to hear of all your problems.
From what I have heard from other parents they go to h*ll and back when their son's or daughters reach the teenage years. Hormones wreck havoc with diabetes control and logic as well 
Have no fear regarding the pump Josh wont be allowed one the fact he goes DKA so easily is a no no plus his mental state. Unless this has changed I believe it is in the NICE guidelines.
Perhaps a change of insulin might help Josh and perhaps meeting other teenagers with type 1 diabetes. Diabetes UK organise holidays and meets. Have you contacted their careline?
Please in all this make sure you look after yourself. ((((((((((hugs)))))))))


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## Catwoman76 (Nov 7, 2011)

Writehand said:


> 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.
> 
> ...



whoa, you have got it full on ,haven't you. Josh seems to be an angry young man.  People cope with medical conditions in a varieity of ways.  Some can just get on with it and others, like Josh, are rebeling against it.  It's obviously hurting you all, as a family.  It's so hard, upsetting and debilitatimg when a loved family member is on a self destruct mode.  I really do understand your despair.  Have YOU thought of trying to find a self help group, so you talk over all these problems? Maybe your doctor could help you.  As for poor Josh ( I'm sure you don't feel this sometimes) he desperatley needs help. What about him writing a letter........... to you, tell him he can write what he really feels inside and he can let it out, a cry for help, on to paper.  Also writing a diary daily could help him, a pattern may show up, but all these things could prove difficult because of his  lack of commitment.  
I am sending you all my very best wishes at such a horrible time and lots of((((((((((hugs)))))))))).  Please take care of yourself, Josh needs you.  Sheenax


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## Robster65 (Nov 7, 2011)

Hi Writehand. Welcome 

I'm guessing there's been some upheaval in Josh's life at some point or other. Or he's just plain angry at the diabetes and many other things, yourself included.

Would you be able to get some family therapy so you can all have your say and tell things how they are from each of your points of view ?

I'm afraid I don't know much about the MH system on the NHS except that it takes months to years to get any real help and you have to fight for it all the way.

As has been said, I hope coming on here has helped a little bit and that bit by bit you may all be able to get some life back.

Rob


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## Blythespirit (Nov 7, 2011)

Hello Writehand and welcome to the forums.

My heart goes out to you, Josh and your other son as I read your post. Like the others I hope it has helped telling us about your situation. Also in reading the replies you are getting. I have 3 grown up children and although none have any real health worries I know how challenging those teenage years can be. I don't have any words of wisdom for your own situation, but wanted to let you know that I hope and pray things get a little easier soon. XXXXX


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## Jennywren (Nov 8, 2011)

Welcome to the forum Writehand , 

It is indeed a testing time for diabetic patients during their teenage years ,I am 41 now but got diabetes when i was 10 i can only speak from my own experience , but i ended up in hospital a lot when i was 13 because of my diabetes being so haywire and the doctors put this down to hormones also affecting my levels , i also found it extra tough at about 18 as at this age my friends were doing what they liked when they liked and i always had to put my diabetes first and this could be limiting at times ! so i begun to hate my diabetes !! this are all normal thoughts and by the age of 19 i was holding down 2 jobs and everything was back on track , I hope everything sorts itself out for all 3 of you soon it must be a very hard time for all of you .Please come here anytime and put down in  words how you are feeling this can help lots .


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## MeanMom (Nov 8, 2011)

I'm so sorry to hear what you are going through, I hope it helped to write it all down. I had written a vey long post myself explaing how I knew at least part of what you are going through but I am having technical difficulties and keep being 'timed out'

I will try to make a couple of suggestions; give the counselling a bit longer and try to ride out the storm till the next session (my daughter is having counselling)

And/or - if he will do it sit down and go through the finances of leaving home and then perhaps he will see this is not practical whatever his health is like OR you may see it is possible financially and you could make a deal that 'sometime in the future' he can do this IF he manages his diabetes a bit better?

Please keep coming back to the forum (and CWD if you can) there are lots of people who know at least part of whAt you are going through and I know I have found it a great support

Take care of yourself (((hugs)))


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## elaine1969 (Nov 8, 2011)

I was so sorry to read your post.  It sounds like you are going through absolute hell.  It is diffucult to know what to say. Kate is a young teenager and whilst she has needed counselling and life has been very difficlut at times she has so far been very sensible with what she eats and monitoring her diabetes.  I know things are likely to take a turn for the worse as she gets afew years older.  I wish you all the luck in the world,  you need to take extra special care of yourself as the stress must be absolutely draining.


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## Tina63 (Nov 9, 2011)

No real words of wisdom I'm afraid, only to say you are not alone.  My 16 year old is giving me all sorts of grief over his diabetes at the moment.  He won't test, will only occasionally inject with meals and had a 26.9 at the weekend.  He refused to test for ketones but I bet they were present.  For 48 hours I think it shocked him a little and he did open up and talk and said he would get back on track, and did test a couple more times that day and Sunday, but by Monday we were back at square one, verbal aggression at me every time I suggest anything related to his diabetes.  I too am at a loss as to what to do.  Boys eh?  He has never ended up in hospital yet due to his own neglect, but I fear it isn't far away.  

I do hope you get things to calm down before long.  It's so hard being a parent of a teenager at the best of times, but this adds a whole new dimension.  Keep your chin up, you are not alone.


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## puma3105 (Nov 9, 2011)

suspicious text removed


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## am64 (Nov 9, 2011)

puma3105 said:


> suspicious text removed



woooo bit heavy 

thanks copepod


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## fencesitter (Nov 10, 2011)

Dear Writehand. I'm sure you've thought of all avenues already, but if Josh is keen to have some independence, I suppose that could be an incentive to get on top of his control ... Having some kind of realistic goal to go for might help, like going camping with his friends or something, if he manages to get a good run of steady numbers?
I sympathise about the work issue. So tricky. Is there anything you could do from home I wonder? I have been self employed for many years now and it does make things much easier with caring for my son, all the medical appointments and so on.
Other than that, I can't think of anything else helpful to say except to offer some solidarity ... 
Very best wishes
Catherine


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