how best to support 20yr son newly diagnosed type 1

[Littlefoot]

Hi ,

My 19/nearly 20 yr old son is newly diagnosed ( 6 wks) with Diabetes type 1 - has so much more going of his life -including a mental health breakdown that meant that he had to suspend his studies at a top unie. We now know that the onset of diabetes type 1 wouldn't exactly have helped him - and probably contributed to his breakdown - the diabetes only became apparent several months after the breakdown but he'd now we know being showing sypmtoms for at least a year before hand. He was recovering from the mental health issues but the diabetes has now meant he has an even bigger battle coming to terms with his situation. he's been encouraged to try to focus on getting on with life but he is finding it very hard to think about the next week let alone wheather or not he goes back to unie - or anything else. his confidence has been very knocked,.




He already has lots of professional support but he wants to do so much by himself and there are long gaps in time between his appointments. And I see him struggle so am trying to help him make life easier .


He seems to struggle to do the practical things and he gets cross if I suggest these - so i figure he needs lots of emotional support. however I also understand that he needs to get a few practical things done to make life less stressy.

Any advice at all as to how I can help him/what I can suggest, how I can support and encourage best / where he could go to get help and support.


many thanks

 

[shirley]

Hi, want to welcome you to the forum and say hello. I am the Mum of a 21 year old who has special needs so not the same situation as your son as I have to totally manage his diabetes for him. However, I can fully understand your anguish and I am sure that there are others on here who can offer some much more practical advice.

I believe that many people who have type 1 diabetes also have mental health issues and I am not surprised, whichever comes first, it can be a difficult and isolating condition to manage. I do think that it is crucial for the person who has type 1 to have contact with others in the same situation as it is not particularly common. I am sure that there may be others at his uni who have the condition but he may not be aware of it. If you could get him to join this forum or a similar one, he may well find this terribly helpful. I believe that there are facebook groups but with all social media I think that you have to be a bit careful as you may well encounter those who are not completely supportive. That is not the case here and I am sure that he would feel welcome and supported if he joined.

I would also recommend that you (and he if possible) spend some time reading some of the threads on these forums as you will find lots of invaluable advice about monitoring bloods, insulins available, education and recommended reading material. I have learned almost everything that I know about diabetes in this way, almost nothing at all from the NHS. I would really recommend getting Type 1 diabetes in children and young adults by Ragnar Hanas and after that Think Like a Pancreas by Gary Scheiner.

There is lots of new technology in the pipeline which will make things much easier to manage in the future. Again, these forums keep you updated about what is available and there are lots of threads discussing these, how people have found them and lots of useful practical advice.

Good luck and welcome to the forum.

 

[Flower]

Hello and welcome Littlefoot 🙂

I'm sorry to hear about your sons diagnosis on top of the other problems he is dealing with.

There are some good young adult clinics for Type 1's at various hospitals around the country where they are switched on to all the issues that having T1 and coping with independence and all the other stuff adulthood throws at you. It might be worth asking where the nearest clinic is to your son where he could meet others in a similar age range dealing with similar issues. Also a great group for support for young adults is Circle D aimed specifically at supporting people aged 18-30 with coping with diabetes, I know this is in the SE so may not be useful to you, http://www.circledrocks.co.uk/. Also worthwhile checking if there are any local support groups close to you.

It's a lot to cope with on top of other problems but if he could make contact with others who are dealing with similar issues it may make life seem a bit better. I hope things start to settle down for him soon. Good luck.🙂

 

[Copepod]

Sorry to hear about your son's mental and physical health problems. I'm assuming that he doesn't have to decide about whether or not to return to uni in the autumn right now? No point adding unecessary stress of decisions that can be postponed.
Emotional support is important, but when blood sugars are all over the place, it's dealing with the practicalities, as well as doing some fun things, catching up with friends etc that really makes the difference. Was he living at home when at university? Have his friends dispersed to other universities? Are any coming back home for summer vacation work etc? Is he being looked after by a hospital diabetes clinic? In home town or universty town (if they're different)?
It would be good if he could join here and ask about things that bother him. We can help with practical tips, often how to do things with least fuss eg a pencil case of insulin pen, spare cartridges, spare needles and a few sweets is easy to pick up and it fits in eg cargo trouser pockets, rucksack pockets etc, depending on what he uses.

 

[HOBIE]

Welcome Littlefoot. Sorry to hear about your son but its not the end of the world. Every day tech is getting better & they are bringing out things to help us. It was 1966 when I was diagnosed (a certain football team won something). Can you think what it was like in hospital then ? You have joined a very good site & keep asking. Knowledge is king 🙂

 

[trophywench]

This is probably going to sound utterly batty when I say it - but has either of you realised that much of what he is going through with the diabetes diagnosis - is a grieving process! But nobody has died you say. Oh yes it has Mum ! - a very important part of your little boy has died - a part that simply kept him alive (with the other bits that aren't dead) cos that's what insulin does.

I recommend BOTH of you reading this http://www.businessballs.com/elisabeth_kubler_ross_five_stages_of_grief.htm

I didn't see that until the noughties - but I could and still can - plot my progress through every ruddy stage of it. Took me years to come out the other side, personally - though on the surface I was 100% fine. But at the time - I thought it WAS 'just me' - which also serves to make you feel totally alone even in a room full of friends and family - and mental health issues do that to you already in any case - you feel like there's a ruddy great red arrow , the tip of which is sticking in your head with a banner bearing the legend 'She's different - BEWARE!' flying like a flag on the shaft telling people to avoid you.

How I WISH I'd read it in 1972.

 

[HOBIE]

I have never let anything bother me in my life after 50yrs of T1. As I have said in the past I would employ any diabetic with the right attitude. I hope LIttlefoot you can be strong & try & educate your son to do his best & live a good life. Once again please keep asking & we will do our best to help.

 

[Littlefoot]

THANK YOU EVERYONE FOR THIS - been slow at coming back as we've just been getting on with things - abd life generally which has been full on ... ... but son has had a real wobble this week - been brewing for a few weeks and not out of it yet - had major anxiety episode. I am sure he's going through the process of change with the diabetes as he was doing well with the mental anxiety prior to the diabetes diagnosis .He was initially elated at simply being alive he was so ill at diagnosis stage. But now he's in honeymoon period and I don't think he feels in control of the diabetes to the level he wants even though the consultant says he's doing really, really well and can be very pleased with his progress !

Being strong and not showing emotions has now floored him . His life is full of so much uncertainty that it's all become just too much! He can't even rely on his body now. So his confidence is rock bottom. What sort of counselling support form the diabetes clinic can he expect please? I've already asked for it but there's no point if its superficial.

I've swotted up on the change curve/ grief models suggested above so I reckon he's at the bottom - despair and depression .... I figure I need to give emotional support now and reassure him he will be ok. Anything else please?

One other challenge is a decision to return to unie or not is looming - and that's adding to the pressure and his challenge of handling uncertainty and decision- making. As it is now there's no way he'll cope at unie - term starts 19 September. Or could he just click out of this phase quickly enough to go?? He has a place at Edinburgh unie - he worked so hard for it - it would be a real pity for the opportunity to be let go ... ...

I know every person is different- and it'll take the time it takes - but I also know that the quicker he can see where he is and adapt and accept, the faster he'll feel better about life .... Missing out on unie for another year ( he can I think defer again - will just make him feel worse than he already does .

I had thought of asking the local chair of Diabetes UK to pop round ...

Any ideas at all to help him get through this?

many thanks

 

[Sands]

Hello Littlefoot! I hope your son gets all the help he needs. In the big scheme of things waiting a while to go to uni won't do any harm academically in my opinion. Best he goes when he feels ready. Thank you for sharing with us. Please keep us updated on his progress 🙂 x

 

[Mel]

Hi Littlefoot
I have a Type 1 daughter at Edinburgh Uni they are very supportive and have given every consideration to her diabetes especially for exams etc etc - she says she wishes she had had this at school. I know they are very good with mental health issues as one of her friends has required alot of support this year. The university medical centre has a doctor with an interest in Diabetes and when they sign on they all go for a chat with the doctor and they all met up which was great as they often feel they are the only one with D of their age . The paharmacy up there are great as well you just ring them and tell them what they want and its all ready the next day. I would give stundent support a ring and chat to them

 

[HOBIE]

If I where you I would get him a part time job. Could be with Duk or similar. The satisfaction & achievement could make a difference. Good luck 🙂

 

[Littlefoot]

Mel
Thank you so much for this. I will certainly suggest this to him. I will call them myself too.

Also a thought - I wonder would your daughter talk to him on the phone/email? Please could you ask her if you think she might? I understand if this is an ask too far or she doesn't want to. Not sure my son will anyway. Just don't want to suggest things to him unless I think they are feasible.

I am trying to find young men of his age and situation eg unie etc ... and get him to talk to them too - he's much better talking to people than emailing etc... Face to face is even better for him. He's just that sort of person. Email is fine once he knows them. So if your daughter knows any young men in this situation that would be great too.

Many thanks

 

[HOBIE]

As I have said on a few occasions. I would employ any T1 with the right attitude ! They are survivors & can cope with a lot. Every day is a challenge in some ways. In a couple of weeks its Tesco Challenge again. Raised £16 million in one year. Anyone can volunteer & its a great positive thing to do for diabetics. This is my 4th year of being "Team Leader". 🙂

 

[Mel]

Hi Littlefoot
My daughter has agreed that she will talk to him and she is messaging you on the DCUK forum
hope your son agrees to message her, shes been to Cambodia and Vietnam this year with it and is now off to Canada on their Study Abroad programme, as we say " she rules D not it ruling her " sometimes though I think she takes it to extremes !!

 

[HOBIE]

Hi Littlefoot
My daughter has agreed that she will talk to him and she is messaging you on the DCUK forum
hope your son agrees to message her, shes been to Cambodia and Vietnam this year with it and is now off to Canada on their Study Abroad programme, as we say " she rules D not it ruling her " sometimes though I think she takes it to extremes !!

Has she heard the song "Holiday in Cambodia". Proper punk song 🙄 Well done to her Mel 😎