Parent of adult type 1 needs advice

[JCTH]

To summarise an extremely long and traumatic journey my son was diagnosed aged 8 with type 1 diabetes and for the next 20+ years has experienced such criticism on his management of it, along with the pain and anguish of living with it. Diabetic complications have led to a return home to live with us. He now appears content locked away in his room for the majority of the time and has been deemed unfit for work (he has always worked prior to returning home). What can I do to support him to have at least some quality of life while ensuring that I treat him like the adult year old that he is? I thought the best people to ask would be those with this horrible condition. Also, is there a forum for us parents of adult diabetics?

 

[Inka]

Welcome @JCTH 🙂 I’m sorry to hear how much your son is struggling. It sounds like he’s really down. Has he spoken to his diabetes team? DSNs are very used to dealing with depression and burnout. I notice you say he’s been criticised - is that by his team? GP? Colleagues?

I think to support him you could listen. It sounds simple but by listening and allowing him to speak freely you might help relieve the burden of diabetes. You could also offer to be a go-between between him and his team if he’s happy for you to do so, and maybe help with practical things like ordering/collecting prescriptions, carb counting, etc.

Can I ask what his diabetic control is like? High or rollercoasting sugars can really affect people and give a horrible feeling of being generally ‘unsettled’. High sugars also make everything a real effort. Is he on a pump or injections?

 

[JCTH]

Welcome @JCTH 🙂 I’m sorry to hear how much your son is struggling. It sounds like he’s really down. Has he spoken to his diabetes team? DSNs are very used to dealing with depression and burnout. I notice you say he’s been criticised - is that by his team? GP? Colleagues?

I think to support him you could listen. It sounds simple but by listening and allowing him to speak freely you might help relieve the burden of diabetes. You could also offer to be a go-between between him and his team if he’s happy for you to do so, and maybe help with practical things like ordering/collecting prescriptions, carb counting, etc.

Can I ask what his diabetic control is like? High or rollercoasting sugars can really affect people and give a horrible feeling of being generally ‘unsettled’. High sugars also make everything a real effort. Is he on a pump or injections?

Thank you for your reply. He is on injections and his control has improved hugely since using the libre system, but he is still having days of unexplained highs and lows which he is finding frustrating. His team have been great, albeit less involved through the pandemic as with everyone I assume but he finds engaging a real effort with anyone currently. I am a huge advocate for listening, but as a counsellor myself he sees me sometimes as 'trying to do my therapy thing' on him so it doesn't always work. Motivation is low, which isn't helped by high levels of anxiety, particularly with COVID levels high again, so the anticipation of going anywhere causes a rollercoaster in levels.

 

[Inka]

Ah, that must be hard if you’re a counsellor. I can quite understand why he might find that awkward sometimes even if you’re not approaching things in a counselling way.

When somebody has got into a bit of a hole mentally, it can be very hard to climb back out. Does he have friends he can see? I know it’s difficult with Covid but personally I’d say getting out of the house can help mood a lot even if it’s just for a walk or a short chore or a visit somewhere. Having a routine can help structure the day too. It sounds trivial but it creates a framework and helps stop that vague drifting feeling.

Would he join this forum, do you think? I find ‘speaking’ to other Type 1s and realising I’m not alone, and that my frustrations are shared by others helps a lot.

 

[JCTH]

Ah, that must be hard if you’re a counsellor. I can quite understand why he might find that awkward sometimes even if you’re not approaching things in a counselling way.

When somebody has got into a bit of a hole mentally, it can be very hard to climb back out. Does he have friends he can see? I know it’s difficult with Covid but personally I’d say getting out of the house can help mood a lot even if it’s just for a walk or a short chore or a visit somewhere. Having a routine can help structure the day too. It sounds trivial but it creates a framework and helps stop that vague drifting feeling.

Would he join this forum, do you think? I find ‘speaking’ to other Type 1s and realising I’m not alone, and that my frustrations are shared by others helps a lot.

I agree that getting out can help and I do try to encourage a walk or at least some fresh air on a daily basis. Unfortunately, his close friends don't live nearby any more but he is in touch online regularly. I will try to encourage him to join this forum. When he was younger he used to question why he would want to attend groups with people whose only thing in common was something he wanted to forget about but he may feel differently now. Thank you, I will revisit this with him and see what he says. Thank you also for taking an interest and making me feel better about things already as sometimes you can't see the wood for the trees.

 

[everydayupsanddowns]

Welcome to the forum @JCTH

So sorry to hear how difficult your son has found things over the years.

It certainly sounds like he is living with diabetes burnout and possibly the clinical depression that can involve. Diabetes can be a bit of a slog at the best of times, but it really is like wading through treacle (no pun intended) when motivation is low. And of course any wobbly BGs that result can be even more demotivating and exhausted

Did you say he was also living with some diabetes complications? That must make things even tougher!

Hope things improve for him soon, and that sharing experiences here helps you to support him.

 

[JCTH]

Welcome to the forum @JCTH

So sorry to hear how difficult your son has found things over the years.

It certainly sounds like he is living with diabetes burnout and possibly the clinical depression that can involve. Diabetes can be a bit of a slog at the best of times, but it really is like wading through treacle (no pun intended) when motivation is low. And of course any wobbly BGs that result can be even more demotivating and exhausted

Did you say he was also living with some diabetes complications? That must make things even tougher!

Hope things improve for him soon, and that sharing experiences here helps you to support him.

Thank you for your reply, it really does mean a lot when others take time out to acknowledge how difficult things are and provide support. Yes, the complications are now restricting a lot of activities which makes motivation more difficult to muster. I do feel that as a parent of an adult with diabetes that I am viewed very differently. When he was a child with the condition there was support galore but as someone who has watched a child grow in to an adult and manage life themselves to now find myself as almost a carer again there is nowhere that I have found that I can go to seek guidance and support for me to care for him (if that makes sense). If anyone is aware of a forum or group that has been set up for us I would very much appreciate hearing about it. Thank you.

 

[everydayupsanddowns]

When he was a child with the condition there was support galore but as someone who has watched a child grow in to an adult and manage life themselves to now find myself as almost a carer again there is nowhere that I have found that I can go to seek guidance and support for me to care for him (if that makes sense). If anyone is aware of a forum or group that has been set up for us I would very much appreciate hearing about it.

Yes, we hear this from spouses, partners and significant others too.

My late wife always bemoaned the lack of help and support that was available to anyone wanting to help and support adults with diabetes.

W.A.G.s

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

I wonder if this is something Diabetes UK could work on in the future?

 

[mark king]

Hello and welcome to the Forum @JCTH.

I am a parent of a now 44 year old who became T1 diabetic when 8 years old.
We as a family meet problems head on and as such did this with diabetes.
I was already diabetic and was getting stuck into it with some understanding of what and how diabetes works.
I understand our approach will not suit all but it works for us. Neither of us have been in hospital due to our condition rather being able to control our illness by following the medical guidance given.

By the way he is married, has a son and is working in the heavy engineering industry so he lets nothing get in his way.
His diabetes is well controlled by injections and Libre sensor. all this I put down to him getting into understanding his condition, building a great relationship with his medical team. testing regularly and reacting to his readings.

There is help out there but you have to ask for it and act with it.

Good luck

 

[JCTH]

Yes, we hear this from spouses, partners and significant others too.

My late wife always bemoaned the lack of help and support that was available to anyone wanting to help and support adults with diabetes.

W.A.G.s

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

I wonder if this is something Diabetes UK could work on in the future?

That would be great. I will get in touch directly and see if there is anything already available and if not whether they would maybe consider providing something.

 

[JCTH]

Hello and welcome to the Forum @JCTH.

I am a parent of a now 44 year old who became T1 diabetic when 8 years old.
We as a family meet problems head on and as such did this with diabetes.
I was already diabetic and was getting stuck into it with some understanding of what and how diabetes works.
I understand our approach will not suit all but it works for us. Neither of us have been in hospital due to our condition rather being able to control our illness by following the medical guidance given.

By the way he is married, has a son and is working in the heavy engineering industry so he lets nothing get in his way.
His diabetes is well controlled by injections and Libre sensor. all this I put down to him getting into understanding his condition, building a great relationship with his medical team. testing regularly and reacting to his readings.

There is help out there but you have to ask for it and act with it.

Good luck

It sounds as if you and your family managed really well with a really positive attitude and perseverance. Unfortunately, that has not been the case for us as there have been other factors involved in the mix which I am reluctant to share as it is not 'my stuff', but diabetes has been like torture to my son, his sibling and myself and he is now experiencing really difficult complications. I feel like we are an advert on how not to manage diabetes even though it feels that we have been trying so hard for so many years.