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My 22 year old type-1 son is in denial ... help!

Discussion in 'Parents' started by Lisa.JP, Jun 30, 2014.

  1. Lisa.JP

    Lisa.JP Parent · Newbie

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    My son was diagnosed at age 18 - not a great time to be told to limit alcohol and sugar etc! Since diagnosis he's very rarely had a reading of less than 25; mostly his monitor simply says 'high', indicating that his blood/sugar level is too high for the monitor to read. He's become more and more disillusioned with the whole 'eating sensibly' thing, as it really doesn't seem to make a difference, and is now in the mind-set that diabetes will kill him, so why should he bother looking after himself.
    He has regular hospital appointments, and his consultant tells him his levels need to be lower (let's face it, he knows this already!) but otherwise he's offered very little support from the medics. He was offered a DAFNE course, but not locally; he works full time and was unable to take the time off at the time the course was offered (he rents a house and wouldn't get paid for the week off, so worried about his cash-flow!)
    Just to add a further complication, he occasionally develops allergies to insulin, so something that works one week may suddenly stop working the next, making him feel very ill in the process.
    Recently I've noticed that he's turning his back more and more on the fact that he has diabetes; his friends tell me that he's no longer testing, often doesn't take his insulin, and apparently has missed hospital appointments. I challenged him about this, and he simply said 'what's the point?'.
    I'm terrified that he'll be found in a coma or worse, but when I try to talk to him about looking after himself, he becomes angry, and simply won't discuss the subject with me.
    Has anyone else had similar experiences? I'd really appreciate any advice on how to support him and encourage him to look after himself.
     
  2. Geordie lass

    Geordie lass Type 1 · Well-Known Member

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    I was in denial for years, and I was diagnosed as an adult! My family used to try and give me advice on looking after myself and telling me to watch what I eat, but of course that is the worst advice to give as it made me feel more angry that I had this horrible condition! It is very hard to get your head around this condition, especially as a young person, and as a parent feeling helpless. Sorry I haven't got any solid advice for you. Hope things improve for your son. Take care. :)
     
  3. lizdeluz

    lizdeluz Type 1 · Well-Known Member

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    Is your son sure that he would receive no pay while attending a DAFNE course? Doesn't the employer have a statutory duty to support him in this? It might be worth talking to his dsn about this, and if your son won't do this, maybe you could make enquiries about this on his behalf.

    I think a DAFNE course would be his best bet for dealing with his anger and frustration about his diabetes. Good luck, I hope you get a proper response from his diabetes unit team.
     
  4. Squire Fulwood

    Squire Fulwood Type 2 · Expert

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    I have just been trying to read up on this point and it does not sound hopeful. Whereas an employee has a right to attend a medical appointment, the employer doesn't have to pay him or may ask him to take it out of his annual leave. A bit bleak.
     
  5. catherinecherub

    catherinecherub · Guest

    Hi Lisa,
    I think a lot of teenagers rebel against their diagnosis and it must be so upsetting for you to watch him. ((((hugs)))

    Would he consider doing an online course at his own pace?

    http://www.bdec-e-learning.com/
     
  6. noblehead

    noblehead Type 1 · Guru
    Retired Moderator

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    Prior to the commencement of the course you can get a letter from the course leader to give to your employer to say that you need the time off and it's in your best interests to attend, however its up to the employer whether this time off is paid or not, there's no obligation on the employer that it should be paid.

    Lisa, I do think your lad would benefit from the DAFNE course but the link that Catherine has provided above should get him started, his refusal to test his bg and administer insulin is a cause for concern and I think he needs to see his diabetes team asap. It might just be that some counselling will help him overcome his fear of dying from diabetes and he can begin to accept that its a liveable condition, if he is offered this then you should encourage him to accept it, for most of us we have all been through the denial period and this is especially so for those who are diagnosed when young.
     
  7. Lisa.JP

    Lisa.JP Parent · Newbie

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    Thank you all, your responses are very encouraging.
    He has checked with his employers, and they will not pay him for time off, medical appts and holidays included (hence he's not had a holiday in 2 years!). Unfortunately the 'slave-labour' job he does has plenty of young people queuing up to be taken on, so he feels he needs to do everything he can to keep the job, including not asking for time off.
    I'd appreciate any further advice on getting him off the downward spiral he seems to be on at the moment.
    Thank you for your words of encouragement and letting me know that he's not the only one out there suffering from this!
    Lisa
     
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  8. Pinkerbell

    Pinkerbell Type 1 · Well-Known Member

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    My heart goes out to you, I can't imagine what a stressful and upsetting situation you are in. I'm afraid I don't have many ideas apart from good old fashioned nagging and emotional blackmail! I think if it was me I would ring the clinic where he is treated to ask for some advice. Some tough talking might help too, depending on his state of mind, for example pointing out that he might have a hard time doing his job if he allows it to affect his eyesight and mobility. There is a really cool thread on here too that might help if you can get him to read it, it's full of posts from amazing people who have managed the disease for over 40 years and are still fighting! Many of them have managed to avoid complications altogether.

    http://www.diabetes.co.uk/forum/thr...r-more-than-40-years.59602/page-3#post-577832

    Keep as close an eye on him as you can and he'll let you! Hopefully he will start to take it more seriously, I think a period of denial at that sort of age is pretty normal (((hugs)))
     
  9. lizdeluz

    lizdeluz Type 1 · Well-Known Member

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    Does your son do a sport? If not, a good way to accept that you have to look after your health and diabetes is to take up something like football, rugby, cycling, swimming, running, boxing etc. Perhaps drop a few hints in that direction, though I can understand that he might think it's nagging!

    I can imagine how worrying it must be for you, and I expect he realises the effect he's having on you. You can tell him that you're impressed with how he's keeping on with his work despite his diabetes, and how it would be easier for him if he could also feel better and stronger by keeping his blood sugar as near to normal as possible.

    If he has the patience, (though probably he hasn't right now) the bdec course online, mentioned above, would help him take control. It's not too demanding, and you can do as little as 10 mins at a time and get some ideas and benefit from it.

    I've seen a few students (12 - 16 years old) having to cope with diabetes at the same time as all the usual teenage doubts and preoccupations, and it certainly isn't easy for them. Your son is older and having to cope with becoming independent at the same time. He will likely soon decide for himself that he can look after himself better. In the meantime, all you can do is let him know you're on his side and so is everyone else!
     
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  10. Bebo321

    Bebo321 Family member · Well-Known Member

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    I was wondering about sport too @lizdeluz

    If your son could be persuaded to get involved in sport, why not suggest he takes a look at www.teambloodglucose.com . We've even got a cycle ride coming up this weekend he might like to come along to.
    The whole ethos of TeamBG is about encouraging everybody to exercise more, but most importantly it's about creating an environment for people with diabetes (PWD) to support and share with other PWD. I wonder if your son would be more open to sharing with PWD, rather than being given advice from those who, even with the best will in the world don't really 'get it'?

    If your son follows twitter, he may also consider listening in (or contributing) to one of the weekly #gbdoc tweet chats. Www.gbdoc.co.uk
     
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  11. nigelho

    nigelho Type 1 · Well-Known Member

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    Sorry to hear that your son is in denial with his diabetes. Yes, the DAFNE course would help, as it 's helped me, but your son must make up his mind if he wants to stay alive without problems. The DAFNE course if for a week and my DAFNE course was over 50 miles away from me BUT I needed the course to manage myself better. Infact, my Diabetes Team is over 50 miles away at Addenbrookes, Cambridge , and I live in King's Lynn, Norfolk.

    Ask the GP, who should be aware of your sons denial, if he would issue a sick note. Failing that if your son wants to HELP HIMSELF, book a weeks HOLIDAY...the course can save his life in the long run..Good Luck.
     
  12. donnellysdogs

    donnellysdogs Type 1 · Master

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    Booking a holiday, or a sick mote would be the best way to get paid.

    The hospital and or his gp should also be offering him some sort of counselling therapy to help him come to terms with injecting regularly. That after all is what makes us T1's different to everyone else. Yes, we have to take a guestimate or factual amount of carbs in food, (seconds, and after a while you don't sctually realise you are doing it)but T1's are able to eat anything if we have injection quantitys right.

    However, somebody whether its family, hospital or his friends need to say directly to him that people live 50 years + with diabetes, many do not have complications (like me 30+ years). We work, holiday and party same as him, but we have accepted injections as part of our lives.

    It sounds as if he could do to meet a type 1 that has lived, still living and enjoying life. Somebody that can help him see that his life does not have to be miserable. Does your hospital run a "buddy" system so that he could meet a type 1 that is happy and content. There are many T1's that have been with his thoughts...

    I too had similar thoughts. I never thought I would get to 50. Well here I am. This was because I was told I HAD to look after myself because my life would be shortened otherwise and I WOULD get complications. I still had non angel times... So I appreciate how he feels.. But I am assuming that his levels since diagnosis haven't ever been too good.. Which makes me think that he could really do to talk to a type 1 that can change his views. Some hospitals have Patients that don't mind talking to someone that is struggling...may be worthwhile talking to dsn to see if they have a Patient like this. Not to lecture or give medical advice, just somebody that can tell him that life can still be damn good.


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  13. iHs

    iHs · Well-Known Member

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    Yr son could use twice daily insulin instead of MDI and this would take care of things a bit better regarding compliance

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  14. donnellysdogs

    donnellysdogs Type 1 · Master

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    Good advice, that could well help if embarrassed around work colleagues or friends etc...


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  15. Lisa.JP

    Lisa.JP Parent · Newbie

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    Thank you all, again! This is my first time on the forum. and I'm so encouraged by the positive comments, help and advice I'm getting from you all - it warms my heart to know that there are people out there who are so very supportive.
    My boy is quite sporty - he does taekwondo twice a week, and has recently taken up archery and shooting. I hope that he'll realise he needs to stay healthy in order to maintain his eyesight (archery and shooting aren't great with poor vision!)
    I've checked with his colleagues - he doesn't get sick pay or holiday pay on his current contract, so time off would be difficult for him, but I'll keep on hoping that he'll get the opportunity to complete the DAFNE course or failing that, the online course that catherinecherub suggested.
    Again, many thanks to you all!
     
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  16. donnellysdogs

    donnellysdogs Type 1 · Master

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    It is illegal to not get holiday pay if you live in UK...


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  17. Lisa.JP

    Lisa.JP Parent · Newbie

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    I know - unfortunately his employers have got around it by the careful wording in his 'contract'! Thanks for you comments and advice!
     
  18. Bebo321

    Bebo321 Family member · Well-Known Member

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    That's brilliant !
    It suggests that your son doesn't lack motivation.
    Point him in the direction of the 'Sporty Diabetic type 1's' facebook group - he will find loads of people there who share info on blood glucose management and sports and exercise.
    He can find the link from the website.:)

    http://www.teambloodglucose.com/TeamBG/Type_1_Basics.html
     
  19. sherylfox

    sherylfox Type 1 · Newbie

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    my daughter is 14 and her reading is always between 99 and 119 99 being the lowest reading we have ever had :( but she is in denial she thinks if she ignores it it will go away i think... she is on a pump and i am pulling my hair out all the time about bolus ...all i get is in a min , yes ok or god sake stop nagging ...if im not on her all the time she wont check her bloods or do her pump , some days she goes out with friends and wont bolus all day , i think because she has a basal rate she thinks oh well im still getting insulin so what , the hospital have warned her of the dangers but to her somebody saying one day your eyes will suffer or your feet , organs etc she thinks yer when im old not now , i am at my wits end nagging her .
     
  20. donnellysdogs

    donnellysdogs Type 1 · Master

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    Gosh... You are going through a tough time as a parent of diabetic child....

    If these levels are consistent and she is being negligent towards her bolusing, it may be that to overcome this that she could raise the basals.

    What pump is your daughter using? The only reason I ask is that the accuchek pump has a remote control and is far less (in my opinion) hassle for a child to think about. All she has to do is get the fully functioning remote control out, not needing to take the pump off at all.

    You are not alone... Many parents (i would say the vast majority of them) will have probs of some sort with their child managing their diabetes...

    Is your daughter taking her blood tests regularly and correcting them with a bolus?

    Others will be along to offer advice.. Unfortunately, I am a "mature" pump user, but can remember very clearly the difficult period of time I went through...


    Loving life
     
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