Advice needed

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su4stu

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Hello I am urgently looking for advice to help my 27 year old son with his type 1 diabetes. He was diagnosed in January 2023 so is still fairly new to everything but he is not looking after himself at all. He is also autistic which obviously complicates things further. He doesn't seem to comprehend the potential life threatening risks if he doesn't take his lantus daily. His diet consists of mainly high sugar sweets etc and his blood sugar is normally in the mid 20s. I am also his legal carer along with being a parent, and I try daily to get him to use insulin and take his meds, but he doesn't want to know. There's only so much I can do as he's high functioning (is of sound mind, makes decisions, verbal etc) and he becomes frustrated with me if I push too much with his meds.
He has recently lost quite a bit of weight, not that he was heavy to begin with anyway, as he won't eat and just sleeps all the time. This now leads to complications with his wellness; sores that won't heal, ailments that won't resolve etc.
I'm at a loss. I don't know how much more I can do to help him. I can't inject him forcibly, I can't force him to see a counsellor. Weve tried to explain he'll end up in hospital the way he's going,but he honestly doesn't care. I'm afraid I'll lose my son to either uncontrolled diabetes or suicide at this point.
 
Welcome @su4stu That must be so hard for you. I wonder if Diabetes U.K. have any advice for such a situation? You could try ringing the number at the top of this page tomorrow and ask. Also, have you tried asking the National Autistic Society if they have any information about dealing with medical conditions?

Does your son live with you or does he live independently? Does he have any support (apart from yourself)? Has he given you any indication why he’s not taking his insulin regularly? Could it be he’s struggling to cope with it mentally? Type 1 is a big burden for anyone whether they have autism or not.
 
Inka said:
Welcome @su4stu That must be so hard for you. I wonder if Diabetes U.K. have any advice for such a situation? You could try ringing the number at the top of this page tomorrow and ask. Also, have you tried asking the National Autistic Society if they have any information about dealing with medical conditions?

Does your son live with you or does he live independently? Does he have any support (apart from yourself)? Has he given you any indication why he’s not taking his insulin regularly? Could it be he’s struggling to cope with it mentally? Type 1 is a big burden for anyone whether they have autism or not.
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Hi there. Thank you for your response.

No I haven't contacted anyone yet. We're currently in contact with our local council as he would like his own place which would need to be sheltered housing. He's been told by his doctor unless he gets himself well then it would be too much of a risk to allow him to live there.

He currently lives with my daughter due to our current housing situation (left previous private rent and awaiting council housing ourselves, we reside in my mother's house which he didn't want to live in). This I know won't be helping him either as he's living in her living room with next to no privacy.

His mental health is just next to nothing. He's suffered with his mental health previously due to his autism, he also has a condition called kerratoconis which affects his eyesight. I think with everything piled on top of one another it's too much for him. I prompt his background insulin intake daily but he'll just shrug his shoulders and go back to sleep. His nurses and doctors as well as us tell him he needs to take better care for himself, but he just won't.
 
He sounds depressed @su4stu and dealing with a lot. When other things are going on in life, the diabetes can feel like the final straw. This can cause what’s called diabetes burnout, which is hard to deal with.

I don’t know if he’s receiving any support for his MH, but that would be a priority because it can make everything else so much harder. With regard to the diabetes, keep it simple, particularly as regards food. I’ve had burnout before and it was horrible. I ate the same breakfasts and lunches and that simplified things a lot as I didn’t have to carb count.

You’ve mentioned his Lantus. Is he taking his bolus/meal insulin?

The high blood sugar will be making him feel absolutely cr*p. Perhaps you could explain that getting that down will make him feel better both physically and mentally. It won’t solve all his problems but it will allow him to deal with them better. Perhaps the promise of his own place could be motivation too?

Does he work? Getting out and doing things can help depression and burnout. It can just be tiny little things.
 
Hi he is already receiving help about his mental health. Currently taking anti-depressants but if I, again, don't prompt him then he won't bother or forgets. He's in a really bad rut right now but he doesn't want to seek any further help (counselling, social groups) as he's frightened of being judged.
 
That’s very sad @su4stu I would very much hope that no-one involved in support, either as a leader or a client, would judge him at all. Why would they? Would he judge them? No, I’m sure he wouldn’t. Lots of people have difficulties. It’s not a sign of weakness or the person’s fault.

Would he go to counselling for a trial period? Could you/he afford private counselling?
 
@su4stu I'm really glad you have reached out for support from Diabetes UK, and @Inka genuinely deserves medals for all the expert knowledge imparted about diabetes over many years, but I have lived experience of many mental health issues I have learned to manage, so thinking back to mental health crises in my twenties it was always useful to have non-medical non-clinical holistic choices alongside prescription medication from GP and I can recommend Local Mind Associations see: https://www.mind.org.uk/information-support/local-minds/
 
Hi @su4stu and welcome to the forum.

Cannot offer any real help but from my volunteering with a carers charity (I am a carer) I know that probably the most frustrating and difficult caring is associated with parents who care for adult children. The combination of high functioning autism and T1 diabetes is going to be very difficult, particularly with housing problems but I can assure you that you will not be alone.

I see you are posting from Scotland where things might be different to England but essentially you have to make a nuisance of yourself in dealing with the local authorities. They have no easy solutions and you have to be persistent to make any progress.

Have you looked to see if there are any carer support groups or charities in your area where you can swap notes with fellow carers on what help is available in your area and how you can tap into it?
 
su4stu said:
Hello I am urgently looking for advice to help my 27 year old son with his type 1 diabetes. He was diagnosed in January 2023 so is still fairly new to everything but he is not looking after himself at all. He is also autistic which obviously complicates things further. He doesn't seem to comprehend the potential life threatening risks if he doesn't take his lantus daily. His diet consists of mainly high sugar sweets etc and his blood sugar is normally in the mid 20s. I am also his legal carer along with being a parent, and I try daily to get him to use insulin and take his meds, but he doesn't want to know. There's only so much I can do as he's high functioning (is of sound mind, makes decisions, verbal etc) and he becomes frustrated with me if I push too much with his meds.
He has recently lost quite a bit of weight, not that he was heavy to begin with anyway, as he won't eat and just sleeps all the time. This now leads to complications with his wellness; sores that won't heal, ailments that won't resolve etc.
I'm at a loss. I don't know how much more I can do to help him. I can't inject him forcibly, I can't force him to see a counsellor. Weve tried to explain he'll end up in hospital the way he's going,but he honestly doesn't care. I'm afraid I'll lose my son to either uncontrolled diabetes or suicide at this point.
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that sounds sad and i hope for you that your last line " WANT HAPPEN "
as it was by me (2 years ago ) wasn't taking care at all of my BG levels and my mom explained me that that's why I'm tired and can not think or function and promised me a car if i do start to take care of it (got it in the end🙂)
and with seeing here really care I started to take more care my HB1C is now 7.1 was 10.6
so maeby find something he wants to promise you need to work like to a small child because brain work dose not help against the pain of the needle
maeby get him a pump like Medtronic's 780 sg cgm that takes good care by it self and you only need to put it in once in 3 days
 
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