Worried Sister

[WorriedSister]

Hi,
I’m the sister of a type 1 diabetic, I realise this is the parents group but I’m hoping there’s somebody here who may have advice having dealt with a similar issue.

Unfortunately my adult younger brother who is diabetic is not looking after himself. He’s grown up with diabetes but has never had real problems, however now due to depression, looking for escapism and remote working he now prioritises computers & gaming and neglects his health. He’s up to all hours (3-4am) with no consideration for eating at regular mealtimes, his diet, & he does no exercise. He recently landed himself in a&e due to not monitoring. It was a traumatic experience which gave him a much needed scare, however just a few months later he’s right back to the same habits, having done this for years.

My poor parents are at their wits end (he’s an adult living at home with them) and it’s not doing their health any good either. Having recently discovered he’s not monitoring again I’m finding it very hard to understand why he would do this after what happened last time, but not only that - but in full awareness that his family and friends are also affected, who are all trying to reach out and have expressed their worry to him and offered support. My brother is a lovely person and is usually, outside of this, the most selfless person I know, which only makes it more difficult to understand.

He even got a telling off whilst in intensive care in hospital from all the paramedics and was embarrassed as he knew he’d caused himself to be there. However he’s now back to doing exactly as he wants, with no heed for the consequences, no matter what anyone says to him it seems to have no affect.

Sorry for the long post, but I’d like to receive some advice from anyone who has been in a similar situation with a loved one. Please keep any responses kind & positive only as as a family we are upset and worried and in need of some advice. Thanks for reading.

 

[Inka]

Does he have a Libre @WorriedSister ? Has he said anything about why he’s behaving in this way? Is he getting help with the depression? Was there a trigger for this?

 

[rebrascora]

So sorry to hear that you are experiencing such a worrying time with your brother. I have no experience of dealing with such a situation but can really empathize both with yourself and your family but also your brother as diabetes is really hard to live with sometimes and there are no days off for good behaviour, so it is understandable that sometimes people hit a brick wall with it and take time out from it even though they can really afford to and it makes them ill.

Do you know if your brother's team are aware of the issues he is having and his A&E visit? Is he attending his appointments or ducking out of those as well?
Does your brother have an insulin pump and CGM or is he on daily injections. I wonder if a pump with closed loop would give him a little bit of mental release from his diabetes. Sometimes just relieving the strain a little can make a big difference to your mental outlook and what seemed impossible, becomes a little easier and more manageable. Some new tech might also appeal to him if he is into gaming and stuff. Since I got Freestyle Libre I tend to see my diabetes like a long running computer game where I try to keep in range as much as possible and improve on my personal best Time in Range results.
As a mature woman it is hard for me to relate to a young male adult so hopefully some parents will be along soon with more helpful advice/support but just wanted to reach out to you and send (((HUGS))) to you all as it is a very difficult situation to be in and there will probably be no quick fix, but maybe if just a little bit of strain can be eased from your brother he will feel like he can start to cope again. Have you or your parents asked him if there is anything they/you can do to help him through this difficult time?

 

[WorriedSister]

Hi both @Inka @rebrascora, Thank you so much for your responses.
He injects and he has Libre, but he took more notice of the readings when he used to have to hold his phone up to it to get the reading, whereas now that it reads constantly he thinks it’s doing it for him and doesn’t look now, meanwhile I’m getting the shared notifications of it being high (for safety after his a&e incident) and worrying when he leaves it high for hours. Maybe we could look into reverting back if it’s possible?

He met with his diabetes team during & after A&E, and they were aware beforehand as he was missing appointments. He has kept his appointments since.

He’s on meds for depression, which were too strong so have been reduced and recently he says he feels ok and not depressed, but still has no interest in doing anything other than computer related things (but never really has). As far as we know it hasn’t been triggered by anything other than lifestyle, not helped when his job went fully remote after lockdown so he works from home.

We got some books on diabetes to understand more, my mum opened a joint gym membership with him but he didn’t ever go with her, I listen to podcasts on mental health & regularly pass them on or tell him about them. I will ask him again what we can do to help, his answer usually is he doesn’t know. I have said before we’d do anything he wants with him whether it’s just a ten minute walk to the local park etc. I suspect he doesn’t give himself chance to know how he feels or why and just escapes with games.

 

[Inka]

now that it reads constantly he thinks it’s doing it for him and doesn’t look now, meanwhile I’m getting the shared notifications of it being high (for safety after his a&e incident) and worrying when he leaves it high for hours

@WorriedSister Silly question, but presumably he understands the Libre isn’t doing it for him? Just like a petrol gauge in a car gives a constant reading but won’t stop me running out of petrol if I never look at it. Would he incorporate some finger-pricking? You haven’t mentioned his age, but I’d be contacting him when he stays high - not in a bossy or critical way, but in a kind, problem-solving way, eg sympathise, ask if he’s done a correction, sympathise with how annoying it is, chat briefly about something that’s not diabetes.

You’ve done the right things getting books and you sound really supportive. I think I’d concentrate on getting him out of the house - for two reasons. Firstly, daylight and fresh air has a very positive effect on depression, and secondly being obsessed with computers and/or gaming isn’t healthy physically or mentally. Think about clubs he could go to: book clubs? Hobby clubs? Sports? Pub quiz teams? He really does need a bit of gentle pushing to get out. Does he have local friends who he could go out with too?

Also, you say he’s working from home - could he go back to the office for a couple of days a week or whatever?

Those are my main ideas. Does he really understand his diabetes or has he previously relied on others and just picked up a few things without having full knowledge? Has he ever lived alone (ie moved out) Going to a DAFNE course would help, if he’s not been before. He’d also meet other people with diabetes.

 

[helli]

This sounds to me like a mental health issue rather than a diabetes issue - or rather the high blood sugar levels are a symptom of the mental health issue. Sadly, high blood sugars can affect our mental health making this a vicious circle.

As someone who spends a lot of time on computers, I would not blame them or gaming. Virtual gaming teams can provide a lot of support to people who struggle to get out. Just look at the support that we get from this online forum of people few of us have met? My advice would be to not demonise computers or gaming, It risks antagonising the guy further.

It is good that he has a Libre although not great that he is ignoring it. I do not think a pump is the right thing at the moment. Adjusting to using a pump requires you to invest a lot into your diabetes management at the start, even if it is closed loop. And you need to understand how to "manually" control the pump as closed loop (and pumps) can fail which can lead to issues very quickly as, unlike MDI, you have no background basal.

I am sorry I have no great suggestions apart from getting help for your brother's mental health even if he says he is feeling fine - he clearly isn't.
And look after yourself and your parents.