Anyone experience of helping a young adult completely burnt out with type one and giving up managing it?

[wetwiped]

DD20 diagnose age 4 has stopped caring about her diabetes. She is checking bloods once a day tops and when I look at previous tests they are all sky high.

I know she is struggling psychologically and when she has spoken to her team at clinic always gets very upset. She did get a couple of calls with a psychologist but they seem to have stopped.

It is impossible for me to truly know what the situation is as, obviously, clinic only speak directly to DD now as an adult and she cannot/will not talk to me about it.

Over time, Ive tried every approach gentle coaxing, bribery, anger, educating on what outcomes are for poorly controlled diabetes, left her to it - nothing has helped.

She has been hospitalised a couple of times following nights out - promises to change and sees the upset, but things soon go back to not bothering.

I'm scared of what the future holds, this is going to catch up with her and I don't know how to reach her.

Any suggestions would be welcome.

Burnout is real. Would she be willing to seek support from other T1Ds? That could help her as they will understand what she is going through. Could fuel her desire to re-engage
Is she on CGM? That could take the burden off having to check BGs so many times and alert her to levels. Similarly I don't know if she's on a pump or if clinic would help to get one? Those with closed loop functionality will help to manage the lows and highs.

I don't know many type 1s who haven't gone through this to be honest. She knows the consequences and risks. From my experience nagging and educating her won't do any good.

It's a tricky thing to explain, but actually living with it every day gets overwhelming and there is no way you can empathise with that unless you are type 1 yourself.

She will pull herself out of it at some point, although i can understand how worrying it must be as a parent.

Dd has a pump, doing the minimum amount she can with it, even delaying set changes. She has had CGM in the past but didn't like wearing another device, although I will try to talk to her again about closed loop, occasionally she will use a libre.

She has never been one for support groups she is not overly confident. I've emailed her DSN with my worries, although, I understand there isn't much anyone can do until DD wants/is in the right headspace, to change things herself.

It's so hard watching your child slowly damage themselves in this way, knowing the consequences.

Thank you for replying,

My brother's school friend had diabetes, as teenagers, he decided he wanted to go on a bender with the rest of them and get drunk. He ended up in a coma and is now living in an old peoples home, literally unable to do anything. Soooo sad. Please let her know how important it is, even scare the life out of her with a story like this, if needs be. Let her know she has diabetes, but don't let diabetes get her, if you know what I mean. Good luck.

My husband was diagnosed type 1 at 18 months old. He found it very hard to accept in his teens and early twenties, and took many risks. I think this is very common in young people. He has come out the other side and is now a model diabetic and luckily has no ongoing health issues.
He would not tell even close friends which is a problem if he needed help. I think this is important that she let's friends know so at least they can keep an eye on her whilst on a night out.
It's all about her accepting her diagnosis and getting on with it. Easy said, but hard to do. It must be incredibly difficult as a parent.
I would think the most important thing is letting her friends know as a first step and not hiding it away.

Absolutely do not do what cherry advises with her horror story!! Jesus H Christ. We are diabetic not stupid! We know the risks but when you are burnt out there is no amount of scare stories that are suddenly going to make you snap out of it, it's not that simple sadly.

We live with a condition that affects every minute of our lives. Diagnosed at 4 means she has put up with the absolute shit show that is type 1diabetes for 16 years and that's just the beginning, this stretches out before her, every single day for the rest of her life with no let up. The only rest you get from it is not looking after it. Can you begin to comprehend how that feels? The only "break" you get from your illness is ignoring it and potentially causing yourself complications and all that anyone looking in can do is nag you and tell you you are going to go blind or lose a foot. That's not helpful it's actually alienating and causes full on ostrich syndrome. It's a really shitty place to be and no one who isn't a type 1 will EVER understand.

I have been type 1 for 18 years, diagnosed as a 12 year old. Im not sure I could have been dealt a worse hand, all the joys of being a teenager and a life altering diagnosis on top just for fun. I have never looked after it. Ignored it for YEARS. My hba1c has reached 125+. I'm 31 now and my last hba1c was 46 with my libre predicting an hba1c of 41 at the moment. No amount of nagging helped me, in fact I hated my mum for it. She preached at me for years but that's easy to do when you don't live with it.

Let her take her break, just don't let her live there for over a decade like I did.

Mindset is a huge thing. The constant "oh you must look after your diabetes" breeds a mentality that it's difficult. Knowledge is power and given the tech available I'd take a cgm over a pump every time. That's personal choice though as I really don't mind injections. If your daughter hates injections then the pump is probably very beneficial to her. But you have to know what your bloods are at to have any kind of control.

Tackling one thing at a time is key or you aren't going to ever beat burn out.

Can you carb count? It's the bane of my life, if you can even hand her her dinner and have already weighed and accurately carb counted it, that would be a huge help. Practical help is far more valuable than anything else.

Sorry for the huge rambling reply but I'm actually in the middle of attempting to get a mentoring scheme off the ground with my local health board. Type 1s who have come through the other side of the teenage years, the burn out, the laser, the injections, the neuropathy..... everything.... helping others through it by learning from our mistakes. Without scare tactics mad horror stories!!!

All the best to you both!

@Gem176

Absolutely do not do what cherry advises with her horror story!! Jesus H Christ. We are diabetic not stupid! We know the risks but when you are burnt out there is no amount of scare stories that are suddenly going to make you snap out of it, it's not that simple sadly.

We live with a condition that affects every minute of our lives. Diagnosed at 4 means she has put up with the absolute shit show that is type 1diabetes for 16 years and that's just the beginning, this stretches out before her, every single day for the rest of her life with no let up. The only rest you get from it is not looking after it. Can you begin to comprehend how that feels? The only "break" you get from your illness is ignoring it and potentially causing yourself complications and all that anyone looking in can do is nag you and tell you you are going to go blind or lose a foot. That's not helpful it's actually alienating and causes full on ostrich syndrome. It's a really shitty place to be and no one who isn't a type 1 will EVER understand.

I have been type 1 for 18 years, diagnosed as a 12 year old. Im not sure I could have been dealt a worse hand, all the joys of being a teenager and a life altering diagnosis on top just for fun. I have never looked after it. Ignored it for YEARS. My hba1c has reached 125+. I'm 31 now and my last hba1c was 46 with my libre predicting an hba1c of 41 at the moment. No amount of nagging helped me, in fact I hated my mum for it. She preached at me for years but that's easy to do when you don't live with it.

Let her take her break, just don't let her live there for over a decade like I did.

Mindset is a huge thing. The constant "oh you must look after your diabetes" breeds a mentality that it's difficult. Knowledge is power and given the tech available I'd take a cgm over a pump every time. That's personal choice though as I really don't mind injections. If your daughter hates injections then the pump is probably very beneficial to her. But you have to know what your bloods are at to have any kind of control.

Tackling one thing at a time is key or you aren't going to ever beat burn out.

Can you carb count? It's the bane of my life, if you can even hand her her dinner and have already weighed and accurately carb counted it, that would be a huge help. Practical help is far more valuable than anything else.

Sorry for the huge rambling reply but I'm actually in the middle of attempting to get a mentoring scheme off the ground with my local health board. Type 1s who have come through the other side of the teenage years, the burn out, the laser, the injections, the neuropathy..... everything.... helping others through it by learning from our mistakes. Without scare tactics mad horror stories!!!

All the best to you both!

So beautifully put ❤️

And 100000% about practical help.

Do not nag - just carb count everything. Weigh and label every piece of food in the kitchen.

Thanks again for the replies, very appreciated.

GEM thanks for your honesty, your post really struck a chord with me, it echos things my daughter has said over the years and has made me think twice about how I approach the " this is what happens when diabetes is out of control" type conversations. Your mentoring scheme sounds like a really excellent idea.

Type 1 diabetes is a very lonely place at times, misunderstood and minimised often. My daughter doesn't mind injections, I've wondered recently whether the pump is right for her at the moment and a cgm may work better, food for thought.

DD is fairly good with carb counting but you've made me think about other ways I could make her everyday responsibilities a little easier, so helping out but in a "covert" way - maybe won't be as annoying to her! Arranging repeat prescriptions springs to mind as she has hypo thyroidism also, so plenty of meds to keep an eye on.

She is planning a holiday to Ibiza in August - I want to be excited for her but all I feel is anxious inside.

Good advice here but are you sure it is diabetes burnout? Has she stopped caring about diabetes or about life generally?

If she has depression, her attitude towards her diabetes might be a symptom rather than the real problem.

Speaking to her GP to get mental health support and deliberately not making it a 'diabetes thing' might be one way forward. Just because someone with diabetes has depression it doesn't mean diabetes is the reason for it. If it is depression, getting treatment for that might help how she manages her diabetes.

My mum was a gp and type 1 and all their young people/teenagers who were struggling would get refers to her, she always said that they would open up to her because she's been through the same thing and knew where they were coming from.

There is a very supportive group on Facebook, fellow T1s supporting each other.

I too totally understand. I did only the absolute basics for a few years. 16-18 years old. No one, literally no one understands how invasive it is and how 24/7 it is.
Nagging wound piss me off even more.

She'll get past it. I've had it 20 years currently doing the basics to stay alive and not feel too bad. Just can't face it and am covered in bruises. Hugs to you both. It sucks.