Worried sick about 20 year old son in denial!

[oxleyjules]

Hello I am new on here and a very desperate worried mum who doesn't know who to turn to so I really need some advice please. I am so worried about my son who is 20 and has been type 1 diabetic since he was 16. He is in complete denial about his diabetes and eats stupid amounts of sugary food - you name it sweets, cakes, tubs of ice cream, chocolate, anything really that has copious amounts of sugar in it. He does inject his novorapid but always forgets until I remind him. He never tests his blood sugars, refuses to go and get his HBA1C done and won't go and see a doctor or health care professional. I have offered to go to his appointments with him but he refuses and whenever I try to talk to him about it he just clams up and walks away - I too am a type 1 diabetic so know exactly what he is going through. I have tried every tactic from shock, emotional, supportive etc but nothing seems to work. He is losing an awful amount of weight and his muscle mass if diminishing by the day. He sleeps all the time and is irritable, moody, distracted, no motivation and get up and go at all. He puts anything and everything before looking after himself and all he is interested in is going out and having a good time with his mates (which I completely understand). He is now drinking alcohol and goes clubbing to raves so could potentially be taking drugs too and often not coming home at the weekend until 7/8am in the morning, which means he misses his background insulin dose. Is there anyone out there that has a similar situation to mine as I just don't know what to do and worried that something serious is going to happen to him...thanks in advance for any advice. Julie

 

[Leadinglights]

Welcome to the forum.
There are parents on here with children of varying ages but I suppose your difficulty is that technically your son is an adult and that makes it very tricky to get it right and in his eyes everything you say is seen as nagging when it is concern for his welfare.
It doesn't sound as if you and he has much support from his diabetic team.
I'm sure someone will be along to offer some words of wisdom.
Could he be encouraged to join the forum as there are a few young people on here who he may identify with.

 

[oxleyjules]

Welcome to the forum.
There are parents on here with children of varying ages but I suppose your difficulty is that technically your son is an adult and that makes it very tricky to get it right and in his eyes everything you say is seen as nagging when it is concern for his welfare.
It doesn't sound as if you and he has much support from his diabetic team.
I'm sure someone will be along to offer some words of wisdom.
Could he be encouraged to join the forum as there are a few young people on here who he may identify with.

Thank you for replying - I am actually sitting here crying typing this in tears I am just so lost who to get help from. I do email his diabetic care team all the time and the response I get is they can't talk to me about it because he is an adult. It's like he just gets forgotten about. I understand their frustration because on the rare occasions he does go and see them, they talk about a plan and when he walks away he just ignores everything they have said to him...

 

[Josh DUK]

Thank you for replying - I am actually sitting here crying typing this in tears I am just so lost who to get help from. I do email his diabetic care team all the time and the response I get is they can't talk to me about it because he is an adult. It's like he just gets forgotten about. I understand their frustration because on the rare occasions he does go and see them, they talk about a plan and when he walks away he just ignores everything they have said to him...

Hello @oxleyjules ,

It must be very upsetting to see your son not managing his diabetes and I can only imagine how stressful this must be for you. It may be helpful to speak to our helpline at 0345 123 2399. Please give us a ring if you are able to.

 

[rebrascora]

Hi and welcome.

So sorry to hear your son is struggling to take ownership of his diabetes and can't begin to imagine how stressful and terrifying that must be for you. The only thing I would say is to perhaps make sure his mates know what the situation is with his diabetes and to get help fast if he looks like he needs it. Your son may get upset about you talking to his mates behind his back or even in front of him but if he won't take responsibility for managing his diabetes himself then it is reasonable that you make the people around him aware of what to look out for and what to do if was to perhaps become aggressive for instance or drop into a diabetic coma, or a hypo although that sounds like the least likely option. I really hope that he comes to his senses soon but can also appreciate how difficult it must be for a young man having to cope with diabetes at that age.

Does he drive? Sometimes that can be used to incentivize them to test regularly.
Does he have Freestyle Libre? Again, a bit of nifty new tech can encourage them to take more interest.

Anyway, I just really wanted to reach out to you and give you some big virtual (((HUGS))) because you clearly need them! Hope you can find a way to get through to him or that the Helpline have some useful suggestions/advice.

 

[oxleyjules]

Hi and welcome.

So sorry to hear your son is struggling to take ownership of his diabetes and can't begin to imagine how stressful and terrifying that must be for you. The only thing I would say is to perhaps make sure his mates know what the situation is with his diabetes and to get help fast if he looks like he needs it. Your son may get upset about you talking to his mates behind his back or even in front of him but if he won't take responsibility for managing his diabetes himself then it is reasonable that you make the people around him aware of what to look out for and what to do if was to perhaps become aggressive for instance or drop into a diabetic coma, or a hypo although that sounds like the least likely option. I really hope that he comes to his senses soon but can also appreciate how difficult it must be for a young man having to cope with diabetes at that age.

Does he drive? Sometimes that can be used to incentivize them to test regularly.
Does he have Freestyle Libre? Again, a bit of nifty new tech can encourage them to take more interest.

Anyway, I just really wanted to reach out to you and give you some big virtual (((HUGS))) because you clearly need them! Hope you can find a way to get through to him or that the Helpline have some useful suggestions/advice.

Hi Barbara

Thank you so much for taking the time to reply. The majority of his mates are aware of his condition, but I'm certain it's rarely discussed. They are all just so focussed on going out and having a good time at clubs and festivals, but I'm sure if a situation did occur they would know he needed help. Like you say he is always running high so that very much goes unnoticed compared to a low. In fact I can't even remember him having a low so that speaks volumes in itself. He has just recently passed his driving test and has had help from me to apply for his license but he has just had the medical form come through to declare his diabetes - at the moment I have said to him if he is not prepared to help himself I am not going to help him in these types of situations. I don't think he is even aware the guidelines for driving with diabetes despite me having told him numerous times. He has a prescription for a libre sensor but refuses to wear them!! Think he's worried about people noticing. I wear mine on my thigh so no-one would ever know. I send him links to you tube videos about people talking about the libre and the different parts of the body it can be placed on but he is just not interested! It's getting to the point that I feel so helpless that sometimes I wish something would happen to me and my diabetes to make him wake up and realise that he can't just carry on the way he is. I know that is a completely stupid thing to say but I do carry the guilt that he has got this because of me! Sorry to sound sorry for myself just having a bad day and it's all come on top. This happens every few weeks or so...Thanks for caring and showing your support I really appreciate it...x

 

[Leadinglights]

I am surprised that whoever he had his driving lessons from was not making sure he was complying with the regulations about testing. Maybe they were but he has just ignored it now he has the licence. You are probably aware but this may help to have it in black and white about the regulations to show him from the DVLA.

Diabetes and driving

You may need to tell DVLA if you have diabetes, depending on the treatment you're getting

www.gov.uk

 

[Inka]

How upsetting @oxleyjules ! My heart goes out to you. I can’t imagine the fear you feel. Do you think he might be depressed? Depression can affect people in many ways and sometimes isn’t as obvious as you’d think. I don’t know how you’d find out, if he won’t see a doctor but there are questionnaires online, and even if your son won’t see his GP you could still talk to them. They won’t tell you anything but you could make them aware. There may be outreach things for young adults.

What was he like when he was first diagnosed? Did he do everything right then? You say he takes his Novorapid if you remind him - that’s a positive thing. Perhaps ignoring it all is his way of coping because deep down he’s afraid? Is there anyone who could speak to him - a relative, a friend, an old teacher he got on with? Sometimes having someone who’s not so close makes it easier to talk.

Could you write him a letter if he walks away when you try to talk? You’ll think he won’t read it but he very well might.

Have you tried contacting his consultant unit and asking if they have a diabetes mentor? Someone a similar age or a few years older who could talk to him. That might be a good thing and help him open up a bit. I spoke to a mentor and she made me feel much less alone with the Type 1.

As for the driving, he’s not safe to drive for a number of reasons. I’d be firm about that because he’s potentially risking other people’s lives.

 

[oxleyjules]

Hi,

Sorry to hear what you are dealing with, very upsetting for any caring parent to say the least.

I'd be interested to find out what would it take for your son to stop and take control? Have you asked him this? given that trying all the usual routes (love, concern, worry etc) hasn't made much difference.

hi @Amity Island - me too! I ask him this all the time but he just says he doesn't know! I reached out to his diabetic team again who contacted him and have asked him to go in and see them on Monday so that is good, but he's been there time after time and they have a good talking to him and he walks away agreeing to a plan and then just ignores it!

 

[Inka]

Do you think a pump might help him @oxleyjules ? He wouldn’t have to remember his basal when he stayed out late because it’s done automatically, and for boluses some pumps like mine just use a phone app - ie I can send a text and do my bolus on my phone and no-one is any the wiser. The discreet aspect might appeal?

 

[oxleyjules]

How upsetting @oxleyjules ! My heart goes out to you. I can’t imagine the fear you feel. Do you think he might be depressed? Depression can affect people in many ways and sometimes isn’t as obvious as you’d think. I don’t know how you’d find out, if he won’t see a doctor but there are questionnaires online, and even if your son won’t see his GP you could still talk to them. They won’t tell you anything but you could make them aware. There may be outreach things for young adults.

What was he like when he was first diagnosed? Did he do everything right then? You say he takes his Novorapid if you remind him - that’s a positive thing. Perhaps ignoring it all is his way of coping because deep down he’s afraid? Is there anyone who could speak to him - a relative, a friend, an old teacher he got on with? Sometimes having someone who’s not so close makes it easier to talk.

Could you write him a letter if he walks away when you try to talk? You’ll think he won’t read it but he very well might.

Have you tried contacting his consultant unit and asking if they have a diabetes mentor? Someone a similar age or a few years older who could talk to him. That might be a good thing and help him open up a bit. I spoke to a mentor and she made me feel much less alone with the Type 1.

As for the driving, he’s not safe to drive for a number of reasons. I’d be firm about that because he’s potentially risking other people’s lives.

Yes I agree he could be depressed - I've asked him to go and see his doctor but he point blank refuses. I have just reached out to the diabetic team at our local hospital and he is going in to see them on Monday morning, which is good but they just give him a good talking to, talk about a forward plan and then he leaves there and ignores everything they tell him. I offered to go with him but he just says no I'm fine. Yes, agree at least he is injecting but he is completely guessing what to give himself and it's clearly not enough by the amount he is drinking and the weight he is losing. Unfortunately his father is completely clueless as to how he must be feeling and just gets angry with him when he doesn't conform. I honestly feel so sad for him because I know how difficult it is to live with diabetes and I too have had my issues and been very depressed at times with my condition so I know it's not easy. I'm struggling to think of someone he could talk to and I did say to him today what about someone the same sort of age as you. There is a young lad who is really trendy and with it who works in the barbers who I know is diabetic because he wears a libre and I say maybe talk to him and he just recoils in horror with my suggestion! He keeps asking for my help to sort out his license for him and get a car, but I have now refused to do anything regarding him driving until he sorts himself out or at least try's to gain a bit of control. All he is interested in is going out with his mates, drinking, clubbing and doing god knows what else without a care in the world...Just desperately frightened that it will all take its toll and whilst I wouldn't wish him any harm (I love him deeply), I think at times maybe it is going to take for something to happen to make him realise that he needs to start looking after himself...Thanks so much for taking the time to reply, really kind and appreciated. I hope you are managing as best you can, it's a roller coaster. I made my husband read this yesterday as I think he needs to understand what we go through!

https://patientslounge.com/conditions/Why-Do-Some-Diabetics-Have-Trouble-Taking-Care-Of-Themselves

 

[Thebearcametoo]

That’s very worrying for you and frustrating.

It’s normal that he wants to do what his mates are doing and for them to engage in risky behaviours it’s just that the cost is potentially higher for him. Do you know any of his mates? The key will come in them supporting him. He can still do everything he wants whilst making some changes that will help.

If trendy lad from the barbers would talk to him take them both for a drink and leave them to it. It will be cringe for him but may get the message across.

Can you move his basal to a time of day when he’s more likely to do it?

It may be that he won’t take responsibility and will end up even more ill because of it.

If you are able then getting him to do his basal, test and do novorapid once a day is an improvement from where he’s currently at.