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Type 1 Denial and very poor management

C

ClareBear 2

Member
Messages
15
Type of diabetes
Parent
Treatment type
Insulin
Just wondering if anyone has any experience of helping someone in denial of T1? 19 yo daughter has been diagnosed 8 years and her management is getting worse all the time, her diet consists of sweets, chocolate, ice cream, custard and most types of junk food, home dinners are normally left on her bedroom floor. Hba1c is through the roof, constantly high blood sugars and feeling ******. Two hospital admissions of dka. Constant arguments about it which is not helping anyone. In desperation I’ve written to gp and diabetes clinic but realistically and with respect what can they do?? She won’t have counselling.
 
Hello and welcome @ClareBear 2

It sounds like a battlefield.. The constant rowing isn't going to open doors so taking a fresh approach... can you try and go out for the day somewhere where you can spend some time together outside of the home where you have space to talk. If you try and put yourself in her shoes and understand what's driving the denial. It could be anger, resentment or even fear, it's a pretty complex condition however with denial there is a reason behind this and then coupled with running high blood glucose levels it will be causing anxiety, possibly depression. I know as a parent you are driven by frustration that she's not taking control of it, but unless you can really see is from her perspective and understand why she's behaving this way then you will continue to row. Would she like to talk to others about this ? There's many here who would be willing to help support her if she's willing to listen.
 
That (at her age) needs a serious intervention, and IMO by a third party. She's lost respect for her wellbeing and maybe even for you. Take charge and good luck
 
At that age she is an adult and need to be responsible for her own health and well being.
'Counceling' typically in sessions with Type1 peers of her own age would work best.

Being 'alone' with this Diabetes Monster can be a devilish and agonising experience and only other Diabetics really understand what it truly means. So for many good reasons, it is not a job that parents or other family members typically will do very well with. Best wishes!
 
All you can do is lead by example.

If she has low carb food options in your kitchen which is as appitizing as junk food she's currently eating, she may realise, she can have it all.
Lower bgs and yummy junk like food.

However, no one would expect that of you. Cooking and going to all that extra expense for an unappreciative teenager.
 
Hey ClareBear2, a tough situation to be in....maybe in all fairness your daughter doesn't need/want your "interfering" in her health as she is 18....perhaps if she would join this forum and meet other T1s her age who are struggling, sick of the day-to-day tedium of their regimen, it might help...there are several young persons who are asking for others to connect with, so maybe look up the T1 thread where some of this discussion is taking place???

Please don't think that I am judging you by my initial comment, just trying to see things from her perspective....I would be inclined to do the same thing if I had a child with diabetes too....but at some point we have to step back, let them know we are there when they need/want us and let them travel their own path...Take care/L
 
Hi juicyj. Thanks for taking the time to respond. She is depressed and sometimes suicidal, she says that she’s taking the ‘scenic’ route. She met a couple of nice folks that she found it easy to talk to at her dafne course so I could suggest that she carries on with those, she also had a lovely adult nurse who she was waiting to be allocated to and then she retired which was a shame. I can suggest the forum. She is normally reluctant to talk about it but I see your point about my own reaction. By trying another approach we both have nothing to lose at this stage.... thanks again and kind regards
 
Mike D said:
That (at her age) needs a serious intervention, and IMO by a third party. She's lost respect for her wellbeing and maybe even for you. Take charge and good luck
Click to expand...
Thanks for your response Mike D. I have a great psychotherapist but she won’t engage with her, and yes you are right in saying that she doesn’t value herself or others. Kind regards.
 
@ClareBear 2 you are being a good mum by supporting her stand on her own 2 feet, too.
It must be hard thou.
We do feel for your worry.

One thing which comes through heavily on this forum. We must take responsibility for our own medical problems.
Our health, our choice to support it positively or negatively.
It must be hard to slowly let your responsibility go? It's hers now! Support from a distance. Food shopping for the right foods are a greatest support until she leaves home. Involve her heavily in cooking and purchasing the right foods. I'm sure she will appreciate your support, whatever age she gets to.
Personally if my mum had just done that would have helped me enormously. She still brings rubbish to our house or expects us to eat it, at hers. Sooo much harder for my maintainance but she's 70 now so no chance of her changing now.
Your daughter is very very lucky to have such a supportive mum. Very lucky indeed. She will see that soon when she gets talking to her age mates with type 1. Not all will be so lucky.

Don't give up but do your bit, which does help enormously. She will appreciate it. I'm sure of it.
 
Hi Clare, I feel for you. Regardless of what is causing the depression (whether it's her diabetes or something else), that surely is the principle issue that needs addressing professionally. How can anyone look after themselves or their health if their mindset is out of sync. It's so easy to attribute all ills to diabetes but who really knows the root cause of a person's mental health? There are no easy answers and it sounds like as a Mum, you are doing all you can. I think I would be putting the emphasis on her mental well being at this stage rather than her junk food habits. Easy to say because I know how hard it can be to access NHS MH services. Maybe alter your response so that it focuses on her welfare rather than the food choices?? Hope you are able to sort it. x
 

Thanks for taking the time to respond Lindijanice. You are quite right she resents any input from me from even gentle reminders about testing her blood sugars to giving her insulin, it’s often met with anger and invokes an abusive response. She rejects most sorts of contact with others with diabetes. It’s the stepping back bit I find so difficult, I feel it’s my place to encourage her to look after herself and I would be failing as a parent if I left her to get in with it, but at this point I will try anything so I can think about that idea... thanks again, kind regards
 

Hiya Kk123. Thanks for taking the time to respond. The poor mental health is underpinning all of her self destructive behaviour at the moment. We did go to the gp who signposted her to the well-being service but she didn’t actually know what she wanted from the service so disengaged. She’s not keen to talk as she seems to be stuck in this comfort zone of self loathing, she doesn’t seem to want to feel better oddly enough. I think you are right is saying that sorting the mental health is the key so will follow that up and lay off the moaning about the sweets. Thanks again.
 


Hi ickihun, thanks so much for you response. I think I need to work on the supporting from a distance bit. my partner and myself do eat healthily and don’t keep crisps biscuits etc etc in the house, if I take her shopping she fills the trolly up with **** some of which I let go but I think there could be room for negotiation, she’s a great cook and I ask her to cook once a week which she will if she’s in the right frame of mind so could try to expand on that so there’s another idea I can work on. Kind regards and thanks again.
 
Wish I had a mum like you. I'll say thank you for her. She will get there. You'll see.
We all find our own way, right.
 
@ClareBear 2 , one of the main reasons T1s become disillusioned by it all is that we're trying to keep track of a constantly moving target with test strips which just give a snapshot in time - it's just not fair.

There's been a remarkable number of posts by people who've been totally burned out, and then found a new lease of life, become more engaged, by getting cgm, either dexcom or libre.

Just being able to see bg moving in more or less real time, and being able to take small steps to keep in range just makes it a much fairer game.

I've absolutely no idea if it will help your daughter - maybe not if she's hell bent on destruction - but it's maybe worth forking out for the libre starter kit, shove it in front of her, saying I got you this new toy, and see if curiousity gets the better of her.

It's worked wonders for a lot of people, just being able to see what they are dealing with instead of the guesswork with strips alone.

Libre is starting to become available on the NHS but it's a post code lottery at the moment. £100 per month if self funding. It can be blinged up with a transmitter, blucon, to send results to a phone. What teenager can resist a nice phone app?!
 
Scott-C said:
@ClareBear 2 , one of the main reasons T1s become disillusioned by it all is that we're trying to keep track of a constantly moving target with test strips which just give a snapshot in time - it's just not fair...
Click to expand...

Indeed, all while being told by everybody non-stop (the besser-wissers) that your bg levels are not good enough and you have to do better!

I am certainly greatful today that my father let me do all my own control and shooting of insulin since I was diagnosed as 10 year old! No doubt that he was worried, following tight what I was doing etc. He surely loved me! But for that, he also respected me and gave me the space I also needed myself to come with terms with this diabetes monster that suddenly had entered into my life.

And still with very well-meaning family members and friends and their parents around, this is really what I remember well from when growing up as a kid with diabetes being so annoying:
 
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Celsus said:
I am certainly greatful today that my father let me do all my own control and shooting of insulin since I was diagnosed as 10 year old!
Click to expand...

My first dsn 30 yrs ago, Sister Carmichael, had been in the job for years before I was dx'd and told me a story from the days when needles were much longer - she treated a couple of youngsters who liked winding their parents up by pinching some skin, inserting at an angle so the needle came out the other side and then squirting over the watchful parents! There's a lot to be said for being relaxed about injecting but that's maybe taking it too far...
 
Exactly Scott, that is the kind of fun you need to also get through the tough times you had when young with IDDM! ;o)
Just think about how many times you have been asked by somebody: "Isn't it hurting to inject yourself like that and oh my good 3-5 times a day you have to do it???"

For most diabetics the actual task of injecting the insulin is the least of all the trouble you have with it.
Could not avoid smiling big when Eli Lilly folded the inhaleable insulin project after having spent more than $1B on it and even gone through the motion to launch it to the market. One would think that such a professional company with so much diabetes history would have done their homework first to understand us their patients better.

I could also post some descriptions about how to moderate your old insulin injection gear into a precise flying 2-inch-needle-dart pop-gun with a range up to around 8 meters distance and still punching them solid into your posterwall next to Suzi Quatro or Blondie or whoever you fancied back then. My father was certainly very impressed about its functionality back then, though less impressed about the lack of safety having them wissle through the house and the many holes left in the wall...

Tough days back then, as it still is today with this disease. But we should never forget also to have some fun in life!
 

Hiya Scott, thank-you for taking the time to reply. She did trial the libre and it was brilliant I have to admit, I liked the up and down arrows so you knew which direction the bloods were going. I recently asked at our clinic and had a firm NO we are not funding that although they said someone else had claimed pip for it on mental health grounds. Under current circumstances I think it would be a good investment in her wellbeing. I’ve had some really good feedback so thanks so much, I’ve got a good ‘to-do’ list going
 
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