Type 1 adult son and diabetes burnout

C

CC72

Member
Relationship to Diabetes
Parent
Hi, I'm new here but feeling really desperate for advice.
My son was diagnosed at 14 he's now 19. For the last 3 years his diabetes management has deteriorated and he has stopped using his fast acting insulin and relies solely on his glargine.
He admitted this to me at the weekend and I just really don't know what to do. He's done this before and he seems to do this when things go wrong in his life. He recently lost his job and I think this has impacted on him.
I understand that he's an adult but he still attends a young person clinic and even when he was younger they were very dismissive of my concerns. I'm a social worker so fully understand that nobody can force him to accept his diabetes and manage it better, he has capacity and is well able to make poor choices if he chooses to but as a mum I'm really struggling. He refuses to speak to anyone else about this except me. He doesn't attend appointments regularly and he's very thin. He plays a lot of sport and his feet don't heal well if he gets blisters. I'm amazed if I'm honest that he's not ended up in hospital. He's never spoken about how he's feeling to anyone not the nurses or the psychologist, his dad or his brothers. It is only me and my son at home now though.
I worry that he has poor mental health and by not using his insulin properly he's self harming. He says that it makes him feel rubbish if he's in range. I'm so worried. Has anyone else had a family member in this position?
 
Welcome @CC72 🙂 Sorry to hear your son is struggling. Even though he’s an adult, that must be very hard for you to watch.

You say he says he feels rubbish when he’s in range - do you think that’s why he’s not having his bolus/meal/fast insulin? Or do you think there’s more to it, eg he can’t be bothered to carb count, he’s worried about gaining weight, worried about hypos, wanting to be normal, etc etc? As he’s talking to you, I think the first thing I’d do is find out exactly why he’s omitting his bolus insulin.

I’ve had burnout and it’s a horrible thing, but I never omitted my insulin, so I wonder if there’s more going on?
 
CC72 said:
Hi, I'm new here but feeling really desperate for advice.
My son was diagnosed at 14 he's now 19. For the last 3 years his diabetes management has deteriorated and he has stopped using his fast acting insulin and relies solely on his glargine.
He admitted this to me at the weekend and I just really don't know what to do. He's done this before and he seems to do this when things go wrong in his life. He recently lost his job and I think this has impacted on him.
I understand that he's an adult but he still attends a young person clinic and even when he was younger they were very dismissive of my concerns. I'm a social worker so fully understand that nobody can force him to accept his diabetes and manage it better, he has capacity and is well able to make poor choices if he chooses to but as a mum I'm really struggling. He refuses to speak to anyone else about this except me. He doesn't attend appointments regularly and he's very thin. He plays a lot of sport and his feet don't heal well if he gets blisters. I'm amazed if I'm honest that he's not ended up in hospital. He's never spoken about how he's feeling to anyone not the nurses or the psychologist, his dad or his brothers. It is only me and my son at home now though.
I worry that he has poor mental health and by not using his insulin properly he's self harming. He says that it makes him feel rubbish if he's in range. I'm so worried. Has anyone else had a family member in this position?
Click to expand...
A comment somebody just said on the television was 'Small steps can make a huge difference'. Could he be persuaded to take his fast acting insulin with 1 meal a day as a start.
It is important to find out why he feels unwell when he takes the insulin, is he taking the correct dose at the right time in relation to food.
Welcome to the forum by the way.
There are a few other parents with kids who may have some suggestions for you and hopefully they will be along soon.
 
Inka said:
Welcome @CC72 🙂 Sorry to hear your son is struggling. Even though he’s an adult, that must be very hard for you to watch.

You say he says he feels rubbish when he’s in range - do you think that’s why he’s not having his bolus/meal/fast insulin? Or do you think there’s more to it, eg he can’t be bothered to carb count, he’s worried about gaining weight, worried about hypos, wanting to be normal, etc etc? As he’s talking to you, I think the first thing I’d do is find out exactly why he’s omitting his bolus insulin.

I’ve had burnout and it’s a horrible thing, but I never omitted my insulin, so I wonder if there’s more going on?
Click to expand...
If I'm honest I don't think he's ever really accepted the diagnosis. He's still in the angry and denial stage. He does just want to be normal he's hugely embarrassed by his diabetes. I do think he misuses insulin to control his weight yes. He's very slim but still within BMI so of course the nurses have always been thrilled with him. I think there is something more going on because if there's any kind of change in his life his first reaction seems to be to stop managing his diabetes. I'm getting married next year though and I'm supposed to be moving out. He's refusing to come with me (20 minutes down the road) so there's an element of him trying to control as well within this. Sorry its just really complex. He's 19 nearly 20 but can be childlike in his responses with me at times. Also now I know he's not been using insulin again he's been making a big show of taking it in front of me when he eats this week but I know that this won't last sadly.
 
Leadinglights said:
A comment somebody just said on the television was 'Small steps can make a huge difference'. Could he be persuaded to take his fast acting insulin with 1 meal a day as a start.
It is important to find out why he feels unwell when he takes the insulin, is he taking the correct dose at the right time in relation to food.
Welcome to the forum by the way.
There are a few other parents with kids who may have some suggestions for you and hopefully they will be along soon.
Click to expand...
Thank you for this. We are way beyond correct doses he has just been using guess work for some time unfortunately.
 
CC72 said:
Hi, I'm new here but feeling really desperate for advice.
My son was diagnosed at 14 he's now 19. For the last 3 years his diabetes management has deteriorated and he has stopped using his fast acting insulin and relies solely on his glargine.
He admitted this to me at the weekend and I just really don't know what to do. He's done this before and he seems to do this when things go wrong in his life. He recently lost his job and I think this has impacted on him.
I understand that he's an adult but he still attends a young person clinic and even when he was younger they were very dismissive of my concerns. I'm a social worker so fully understand that nobody can force him to accept his diabetes and manage it better, he has capacity and is well able to make poor choices if he chooses to but as a mum I'm really struggling. He refuses to speak to anyone else about this except me. He doesn't attend appointments regularly and he's very thin. He plays a lot of sport and his feet don't heal well if he gets blisters. I'm amazed if I'm honest that he's not ended up in hospital. He's never spoken about how he's feeling to anyone not the nurses or the psychologist, his dad or his brothers. It is only me and my son at home now though.
I worry that he has poor mental health and by not using his insulin properly he's self harming. He says that it makes him feel rubbish if he's in range. I'm so worried. Has anyone else had a family member in this position?
Click to expand...
I'm so sorry to hear about your very tough situation. Does your son's diabetes department have a specialist Psychologist or Psychiatric Nurse attached to it, perhaps?
 
CliffH said:
I'm so sorry to hear about your very tough situation. Does your son's diabetes department have a specialist Psychologist or Psychiatric Nurse attached to it, perhaps?
Click to expand...
They do but he refuses to go sadly.
 
CC72 said:
They do but he refuses to go sadly.
Click to expand...
That's such a shame: would he agree to let you go by yourself anyway? They may be able to provide you with helpful support - and possibly ideas to 'drip feed' to your son.
 
CC72 said:
If I'm honest I don't think he's ever really accepted the diagnosis. He's still in the angry and denial stage. He does just want to be normal he's hugely embarrassed by his diabetes. I do think he misuses insulin to control his weight yes. He's very slim but still within BMI so of course the nurses have always been thrilled with him. I think there is something more going on because if there's any kind of change in his life his first reaction seems to be to stop managing his diabetes. I'm getting married next year though and I'm supposed to be moving out. He's refusing to come with me (20 minutes down the road) so there's an element of him trying to control as well within this. Sorry its just really complex. He's 19 nearly 20 but can be childlike in his responses with me at times. Also now I know he's not been using insulin again he's been making a big show of taking it in front of me when he eats this week but I know that this won't last sadly.
Click to expand...

I posted a link to a video with a young man who omitted insulin recently in this thread:

Inka

Thread 'Diabulimia - “the world’s most dangerous eating disorder.”'

Interesting article on the BBC, complete with an interview with the very eloquent Lawrence, about the dangers and difficulties of having diabulimia:

www.bbc.co.uk

Diabulimia: The eating disorder dubbed 'world's most dangerous'

When Lawrence Smith was a teenager, he developed the eating disorder diabulimia
www.bbc.co.uk

I like the way he points out the contradiction between ‘count every carb’ and ‘just ignore food labels’.
  • Like

Would your son consider joining this forum? It sounds more like denial, as you say, rather than burnout. Someone once said, “You can ignore diabetes, but it won’t ignore you”. I know when you’re young you feel invincible, but does he properly realise the damage he’s doing? I know talk of complications often whizzes over young people’s heads, but they’re real.

What are his hopes for the future? I know you mention he’s lost his job, which must add to his stress, but I’m talking 10 years in the future. If he doesn’t control his diabetes, his future might be less good than he hopes. If he makes peace with it, and controls it, he can live alongside it.

Not a nice thing to consider, but do you think he might be partly using the diabetes to control you? You say he’s refusing to move. He must know how worried about him you are. Somewhere deep inside does he think if he’s ‘ill’ you’ll put all your focus on him?
 
CliffH said:
That's such a shame: would he agree to let you go by yourself anyway? They may be able to provide you with helpful support - and possibly ideas to 'drip feed' to your son.
Click to expand...
Would they do that? I didn't know that was possible. That's a really good idea tbf I will give the clinic a call tomorrow. I did go to a nurse appointment with him last year he agreed, but said I couldn't speak which I didn't. The nurse was not impressed which I totally get but it was very annoying because he just completely lied in the appointment. Thank you for the advice.
 
Inka said:
I posted a link to a video with a young man who omitted insulin recently in this thread:

Inka

Thread 'Diabulimia - “the world’s most dangerous eating disorder.”'

Interesting article on the BBC, complete with an interview with the very eloquent Lawrence, about the dangers and difficulties of having diabulimia:

www.bbc.co.uk

Diabulimia: The eating disorder dubbed 'world's most dangerous'

When Lawrence Smith was a teenager, he developed the eating disorder diabulimia
www.bbc.co.uk

I like the way he points out the contradiction between ‘count every carb’ and ‘just ignore food labels’.
  • Like

Would your son consider joining this forum? It sounds more like denial, as you say, rather than burnout. Someone once said, “You can ignore diabetes, but it won’t ignore you”. I know when you’re young you feel invincible, but does he properly realise the damage he’s doing? I know talk of complications often whizzes over young people’s heads, but they’re real.

What are his hopes for the future? I know you mention he’s lost his job, which must add to his stress, but I’m talking 10 years in the future. If he doesn’t control his diabetes, his future might be less good than he hopes. If he makes peace with it, and controls it, he can live alongside it.

Not a nice thing to consider, but do you think he might be partly using the diabetes to control you? You say he’s refusing to move. He must know how worried about him you are. Somewhere deep inside does he think if he’s ‘I’ll’, you’ll put all your focus on him?
Click to expand...
Thank you. I will take a look at that. He just says he will be dead when I talk about the impact and the future. I know he is using his diabetes to control me, absolutely. But I will be moving out and he knows this. Because if I don't then I will also be enabling this behaviour from him. However when the time comes I know I will struggle and he's very strong willed so I just don't know which way he will go. I've been with my partner for nearly 4 years now though and it's time for us to live together.
Thank you all for these comments. I've been struggling with this for so long and it's so hard. I'm lucky enough to have a lot of insight into emotional wellbeing, trauma etc with my job but it's not that easy when you're a mum!
 
CC72 said:
Would they do that? I didn't know that was possible. That's a really good idea tbf I will give the clinic a call tomorrow. I did go to a nurse appointment with him last year he agreed, but said I couldn't speak which I didn't. The nurse was not impressed which I totally get but it was very annoying because he just completely lied in the appointment. Thank you for the advice.
Click to expand...
I don't know if it's possible - but it's worth asking, I think: I'm sure they'll come across this situation many times. As you say, assuming that he has capacity to decide whether or not (and to what extent) you get involved, they'll need to check with him.
 
Hi and welcome from me too. I am so sorry to hear you and your son are going through this. As a mother, with no control over the situation, it must be very worrying.

I wonder if he might be better going on to a mixed insulin for a while. Does he eat meals regularly? ie Breakfast lunch and evening meal?
Mixed insulin is a mixture of basal (long acting insulin) and bolus (fast acting meal time) insulin. It is taken twice a day before breakfast and before evening meal. No real carb counting but sticking to roughly similar sized meals, so there is less to think about. It is a bit old fashioned and not very flexible, but takes less head space and might ease the pressure on him a bit. However, if he skips meals he could potentially hypo because the meal time insulin is included.... unless he also skips the injection but then he will be missing half of his long acting insulin. Do you think 2 injections a day and regular meals would suit him better for now or perhaps the other option would be a pump. What is he like with technology. I am guessing if he doesn't bother much with his Libre then he wouldn't bother with a pump either but another option to consider and perhaps discuss with him. The pumps are usually operated from a smart phone app, so there is no getting a pen out to inject for meals and that might mean his diabetes was less visible when out for meals with friends etc as he would just look like he was doing something on his phone rather than injecting insulin. However the pump would be visible in communal showers etc if he plays team sports and stuff. There are really small patch pumps which are not much bigger than his Libre sensor though, so if he accepts a Libre he might be OK with a patch pump.
 
CC72 said:
Thank you. I will take a look at that. He just says he will be dead when I talk about the impact and the future. I know he is using his diabetes to control me, absolutely. But I will be moving out and he knows this. Because if I don't then I will also be enabling this behaviour from him. However when the time comes I know I will struggle and he's very strong willed so I just don't know which way he will go. I've been with my partner for nearly 4 years now though and it's time for us to live together.
Thank you all for these comments. I've been struggling with this for so long and it's so hard. I'm lucky enough to have a lot of insight into emotional wellbeing, trauma etc with my job but it's not that easy when you're a mum!
Click to expand...

But he must have some hopes for the future - a partner, travel, etc? He can have a good future if he looks after himself. Does he have a close friend who’ll talk to him? Not in a ‘mum’ way, but in a “Look, mate…” way. Somebody who’ll tell him straight but kindly.

I doubt you’ll be able to go to a psychology team appt for your son, as it were, but you can phone his team and tell them - in confidence - what he’s doing. Tell them he’s lying at his appts and what the true situation is. Then when they see him again, at least they’ll know and can tactfully approach things.

Finally, would he consider a pump? Mine’s controlled by my phone, so a bolus is just a question of getting my phone out - very discreet.
 
rebrascora said:
Hi and welcome from me too. I am so sorry to hear you and your son are going through this. As a mother, with no control over the situation, it must be very worrying.

I wonder if he might be better going on to a mixed insulin for a while. Does he eat meals regularly? ie Breakfast lunch and evening meal?
Mixed insulin is a mixture of basal (long acting insulin) and bolus (fast acting meal time) insulin. It is taken twice a day before breakfast and before evening meal. No real carb counting but sticking to roughly similar sized meals, so there is less to think about. It is a bit old fashioned and not very flexible, but takes less head space and might ease the pressure on him a bit. However, if he skips meals he could potentially hypo because the meal time insulin is included.... unless he also skips the injection but then he will be missing half of his long acting insulin. Do you think 2 injections a day and regular meals would suit him better for now or perhaps the other option would be a pump. What is he like with technology. I am guessing if he doesn't bother much with his Libre then he wouldn't bother with a pump either but another option to consider and perhaps discuss with him. The pumps are usually operated from a smart phone app, so there is no getting a pen out to inject for meals and that might mean his diabetes was less visible when out for meals with friends etc as he would just look like he was doing something on his phone rather than injecting insulin. However the pump would be visible in communal showers etc if he plays team sports and stuff. There are really small patch pumps which are not much bigger than his Libre sensor though, so if he accepts a Libre he might be OK with a patch pump.
Click to expand...
Thanks Barbara I will look into the mixed insulin and talk to him about this. I've been asking him to consider a pump for some time. It took 2 years of persuasion for the libre and he's refused the pump because he says it will turn him into a machine. He could def do with it though and it would give him a lot more freedom but he can't see that at the moment.
 
CC72 said:
I just know that they are high. He wears a CGM but doesn't really bother to look at what the readings are and won't let me look.
Click to expand...
At a guess, the fact your son only divulges a certain amount to you on his situation is at least a little step forward?
 
Inka said:
But he must have some hopes for the future - a partner, travel, etc? He can have a good future if he looks after himself. Does he have a close friend who’ll talk to him? Not in a ‘mum’ way, but in a “Look, mate…” way. Somebody who’ll tell him straight but kindly.

I doubt you’ll be able to go to a psychology team appt for your son, as it were, but you can phone his team and tell them - in confidence - what he’s doing. Tell them he’s lying at his appts and what the true situation is. Then when they see him again, at least they’ll know and can tactfully approach things.

Finally, would he consider a pump? Mine’s controlled by my phone, so a bolus is just a question of getting my phone out - very discreet.
Click to expand...
He has a girlfriend but he doesn't want her to know what's really going on as he says he doesn't want her to be his carer. His only real passion is cricket and sport in general really. He can be very upbeat but then he can also be very low in himself as well. I will ring the clinic anyway to see if they will offer some advice. He won't have a pump, I've tried.
 
But any girlfriend will be his career if he gets ill….

It’s good he’s got a girlfriend - I hope that makes him feel positive. Perhaps you could ask him, tactfully, how he’d feel if his girlfriend had Type 1 but wasn’t looking after herself? If he cares about her a lot, then she might be the catalyst that motivates him to look after himself.
 
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