A parents worry

[Mark Mulhern]

so first time in almost 16 years I have spoke or posted about diabetes. I am just a dad and know that my worries are insignificant compared to those of my amazing daughter who turns 18 in the summer and who has been diabetic since turning 2!

She is beautiful, bright and in many ways an inspiration but right now I feel nothing but a failure to her with no where to turn. Average blood sugars are high teens. Crashing lows follow as does the desperation, fear and anger.
She understands diabetes. She gives talks about it to school staff other pupils parent forums but understanding it and (I know she hates these words) just doing it are completely different. She hates diabetes, she has never accepted it and we can get no sense of control as she regularly secretly eats so no one professional or "professional" parent could understand what to do with her Estes as for years now her rates are artificial to deal with the food/sweets cravings.

I have family experience of alcoholism and think where I am now is where I was when dealing with this. Until she accepts diabetes we cannot move on but realising I cannot help her as she causes significant harm to herself is killing me and no psychologist, consultant GP or friend can do anything until she helps herself. My heart is breaking. We have laughed, cried, rewarded, punished, hugged, huffed and just about everything we can think of so now I hope and pray that "the penny drops" "the Damascus moment" the light bulb moment happens soon. Not for me but for my beautiful girl!

 

[grovesy]

Welcome.
Has she sought help from a Psychologist.

 

[Mark Mulhern]

Welcome.
Has she sought help from a Psychologist.

Would you believe me if I told you I typed the post from outside a psychologists office while she was in?

 

[stephknits]

Welcome, Mark. I really feel for you and your daughter and remember myself what a turbulent time life was at her age. I was lucky enough to not get diabetes until much later (42) and cannot imagine how I would have coped as a teenager. I know many teenagers sail through this time, but others find the transition really tough (I know I did). Has she always hated the diabetes or has it got a lot worse recently?

 

[grovesy]

Would you believe me if I told you I typed the post from outside a psychologists office while she was in?

Yes I would as, even when my son saw one many years ago he went in alone and much younger and we would only be told if he gave his permission. He is no Diabetic but had problems at school.

 

[Flower]

Hello and welcome Mark 🙂

It is such a difficult time at 18 to cope with all the challenges of growing up, maybe leaving home, gaining independence plus finding a happy balance with diabetes. I know I found it a time when I just hated having diabetes, I thought everyone else was a model patient getting a row of perfect numbers. My growing up was pre- internet so I had no way of knowing how much of a challenge everyone else was finding it.

There are some great young adult diabetes clinics around at various centres who 'get' all the issues facing young people and are really switched on to the best way to help out. It may be worth asking for a referral to one if possible. I found the transition from paediatric services- where the approach was more gentle- to an adult clinic where I got told very bluntly that I needed to get better control very difficult to cope with and started to feel an utter failure with my attempts to control my levels. Does your daughter have a good diabetes team? They will have seen and heard it all before and will want to help her find something that works. It is so much better if she is able to tell her team how she feels and what she is doing eating wise rather than cover it all over and pretend there isn't a problem.

I don't know what part of the country you are in but there is a fantastic group called Circle D for young people aged 18-30 -http://www.circledrocks.co.uk/default.html. There may be something similar local to yourself, otherwise would she be happy to join our forum and speak to people who absolutely get the challenges of coping with diabetes through all its ups and downs?

My light bulb moment came when I started to read diabetes forums and saw that everybody has a daily challenge to stay in range and that's just the nature of diabetes. It is flipping hard, sustained work to keep things under control with a myriad of 'who knows why' influences pushing our results one way or the other. I actually like getting good control which is something I never thought I could do. She will find a balance in time because rallying against it all the while is so wearing and doesn't help get better results.

You are doing a fantastic job trying to find ways to help your daughter, my parents never spoke to me about diabetes and told me I couldn't tell any one I had it so please don't feel a failure. It's such a time of turmoil becoming an adult with diabetes in tow. I wish you both well and hope things start to settle for her. 🙂

 

[trophywench]

Personally - I think Dad needs {{{Hugs}}} let alone Daughter {{{Hugs}}}

Much like Diabetes itself Mark a) there is no blame so don't waste effort applying it to yourself or any one or thing else b) every single person and situation is different and thus c) there are never any hard and fast rules about parenting in the first place!

She's still alive - and evidently - kicking! - aged 18. Between you, as parents - you've QUITE evidently managed to do a LOT of things right - haven't you?

As a Type 1 - I am going to be the very first person NOT to tell your daughter she shouldn't ever cheat with her diabetes care.

Instead - she has to learn to live with it for a very very long time - so here, we have an analogy with marriage/relationships. The only practical difference is that we normally choose our marriage/partnership candidates, these days and for ever almost in Western culture. So we get shacked up together and then some problems start to materialise. They may be relatively minor ones - like him stirring his tea and putting the wet teaspoon back in the sugar bowl because - clearly - he's a complete philistine and hasn't been brought up properly! So - we weigh up the pros and cons - is it really worth having this bloody interminable argument with every single drink, for the rest of my life? Nah - not really - in comparison to the scant effort involved in having to wash up yet another encrusted and hardened spoon along with the mugs - so whyever waste that much time and energy in doing it?

So I stopped! The sugar encrusted spoons still happen, 45 years later. Grrrr.

BUT - just think of all the energy I've saved over the years by simply not arguing - and thus - and this is the important bit - had the energy - and the time for MYSELF - required to pursue all the things I've actually WANTED to do!

It is far far easier - and pleasant for all of us - to live with a friend than an enemy.

And - when we've known someone a long time - eg me and my mate (another Jen) who first met aged 7, so just the 59 years - we can both take the **** out of each other and be exceptionally rude on occasions, without any fear of reproach.

And so it is with T1 - learn to live with it, by finding out its rules. Box ticked. Then - actually do exactly that for a period. Box not ticked. Yet. Let the period be long enough, to fool the diabetes into actually believing that she will obey.

Then - and only then! - start taking occasional liberties with it - returning to keeping within its rules in between. So - keep the liberty taking for special occasions when she wants a bit of a treat !

And live in happiness and contentment (with occasional ranting, door slamming etc as necessary) for the rest of her life!

D'you know - if I woke up tomorrow without Diabetes - I'd probably still be wandering round next Saturday morning (at least) wondering what I need to do and how the hell to behave !

 

[SB2015]

Welcome Mark.

As Jenny said you have clearly done a very good job as your daughter has lived with this for sixteen years already. I do not have a magic solution, and dealing with T1 is hard work, so it is no wonder that it gets people down, then addin all the other factors of being 18 and it is more difficult.

Do keep in touch on here and encourage your daughter to do the same on the forums available.

 

[HOBIE]

Hello Mark, we all wish you & your daughter the best ! I too have been T1 from a very early age (3) a more than 50yrs ago. I would realy like to talk to her & I know how hard it is to keep a straight head. I also give talks to others which I find very rewarding. Tell her I would employ any T1 with right attitude because they are very powerful people & can get through. Really good luck & let us know if we can help pls

 

[James 048]

so first time in almost 16 years I have spoke or posted about diabetes. I am just a dad and know that my worries are insignificant compared to those of my amazing daughter who turns 18 in the summer and who has been diabetic since turning 2!

She is beautiful, bright and in many ways an inspiration but right now I feel nothing but a failure to her with no where to turn. Average blood sugars are high teens. Crashing lows follow as does the desperation, fear and anger.
She understands diabetes. She gives talks about it to school staff other pupils parent forums but understanding it and (I know she hates these words) just doing it are completely different. She hates diabetes, she has never accepted it and we can get no sense of control as she regularly secretly eats so no one professional or "professional" parent could understand what to do with her Estes as for years now her rates are artificial to deal with the food/sweets cravings.

I have family experience of alcoholism and think where I am now is where I was when dealing with this. Until she accepts diabetes we cannot move on but realising I cannot help her as she causes significant harm to herself is killing me and no psychologist, consultant GP or friend can do anything until she helps herself. My heart is breaking. We have laughed, cried, rewarded, punished, hugged, huffed and just about everything we can think of so now I hope and pray that "the penny drops" "the Damascus moment" the light bulb moment happens soon. Not for me but for my beautiful girl!

Welcome to the forum mark ,