Help my daughter is Type 1, but wont take her insulin!

[Adeydee95]

I don't know which way to turn, my daughter was diagnosed Type 1 just before her 13th birthday 7 years ago. She has never managed her diabetes well and constantly runs too high for her meter to even give her reading. Her poor diabetes management was the cause of many arguments as a teenager. She ended up leaving home to live with her father when she was 15, but he never helped her with her diabetes. She has been in hospital at least 20 times with DKA over the years, but doesn't seem to care. She also suffers with mental health issues and depression, I believe she has borderline personality disorder, but it has never been diagnosed. She was in a bad place earlier this year and took 2 overdoses ending up in hospital. She refuses to accept any help from the mental health team. She is now 20 years old working full time and living on her own, but we are only 5 minutes away for support, and see her at least once a week. She seems to be in a good place mentally at the moment, however she has recently been told she has Diabetic Maculopathy. Even this has not shocked her into looking after her diabetes. I went with her to see her diabetic consultant recently and found out that whilst she is meant to have 4 injections a day, she only has maybe one every few days. And really could not see how she could improve this! I was shocked, I believe she is still in denial and is hoping that if she ignores it, it will go away. I asked about a pump, there is a year long waiting list, but she doesn't meet the criteria, but surely getting some insulin into her would be better than none, the consultant agreed. I cannot understand why the health professionals hear what she says, but will not offer any alternative to daily injections, they seem happy to watch her slowly kill herself. Any advise? Is hypnotherapy worth a try? Should I get her a pump privately? I want to help her but don't know which way to turn. Please can someone help me?

Try just talking to her about it, I was exactly the same when I first got diagnosed and trying to force her definitely won't help. for me it was more about being in denial I didn't realise how what I was doing was affecting me. it might take her a while to open up but listening to what she's going through and how she feels even if you don't agree with it it will help

 

[3church_49]

I was exactly the same as your daughter although slightly younger when I was diagnosed. I rebelled when I became a teenager, and I had leg ulcers throughout my teen years, which were horrendous but it didn't scare me into looking after myself better. The first step in acceptance of my diabetes was being told by a diabetic nurse that running high was not my fault, diabetes was not my fault and that its not for anyone else to judge me. Secondly I made up my own mind when I decided to take care of myself. If you don't want to do it, no matter what anyone else says otherwise you just won't. A nurse once told me to right down some advice that I would give to a young child who didn't want to take their shots, and the reasons why it was a bad idea. She then asked me to read it out and said, would you listen to that advice from another diabetic if you were a child and I said yes. This was a pivotal moment for me. This year I went to a specialist after avoiding them for two years, to find that my hba1c had dropped and I was very close to a healthy number. Since then I have started checking my sugar levels, I joined heaps of forums like this one, and just generally through this virtual community, began to learn things about myself and diabetes that I never knew. The worst thing about diabetes is that people don't understand how hard it is. When I was younger my parents used to tell me off for having highs and that made me stop caring, I thought if I was getting told off even when I couldn't help it I may as well just not care about it at all because either way I was still getting negative feedback. I changed slowly over time, I started to change my eating habits in 2010 and it's taken 6 years to get to this point. Maybe she's embarrassed to have it? I will say one thing, if she reads some of the stories from here and on other forums and she realises she's not alone and that we all find it difficult she may slowly start to make changes which will improve her quality of life. However back when I was in her situation I probably wouldn't have taken any advice from anyone If I could send my 12 year old self a letter from me now in the hope I could change some of my life choices I would 100%! Hindsight is a wonderful thing.

 

[alexander st clair]

I don't know which way to turn, my daughter was diagnosed Type 1 just before her 13th birthday 7 years ago.

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Right I have been a diabetic pretty much all my life or since I was 9 months old. I was not given the option to do it to my self, I was not in a careless accident or anything like that. I was given mine by another human being incharge of baby sitting me, she overdosed me with asprin at 9 months old, putting me in a coma for a few weeks. The point being I know the resentment personally and deeply about not wanting something having control over your entire life and in my case having it cause by careless other. The first thing I am thinking of is what size needles your daughter is using, I am on bd microfine 4mm or 5mm needles. They dont hurt or cause any pain even if you move them whilst jabbing( Not reccomended) I too was like your daughter, When I was 17 Was the first time I took a lantus solostar injection of 60 units and drank a 1 liter bottle of Jack Daniels whisky. Not beacuse I resented it which I did and not beacuse I was feeling limmited or suffering any major things (Lost grandfather at this point too) I did it beacuse I was out of control. When a Diabetic is out of control all emotions are amplified ten fold this includes (Depression, Random Bursts of anger(no Reason / unprovoked) Anxiety, Fear/ Dread Random sadness, stress and confusion.) These emotions have a huge affect in the care we take in our selves known as a Diabetic Burnout (DB) This is mostly so far everyday life situational living. Then you have those of us that take it those steps further to DKA Ketoacidosis, This is where keytones a in the blood have caused it to become acidic and starting to eat our insides (nice huh?) This is extreemly painful often compared to torture. The effects are long term (Sight loss, Hearing loss, Tinitus, Numbness, heart conditions and complications, mental complications, loss of limbs, violent stomache cramps, migranes and even dihorea and vomiting. All sense or compementus thought is gone at this point with heavy lethargia(Tiredness) Your daughter is on a path of self destruction and its only a downward spiral, stopping it early is the best chance for FEWER COMPLICATIONS. In the world we live in and the way it is going politically and internationally or even at you basic home can be difficult to deal with.

Here is the important message to the parent:
Fighting, shouting and trying to control your daughter in any way will push her away (Emotional instability Mentioned above) moving her from pillar to post ie dads yours anywhere inbetween is STRESS (Causes the blood sugar coaunt to rise - Proven)
Any arguing or saying you know better and you have donbe reasearch or heard this or got told by a doctor (again pushes away and interacts stress and angst against you.) In your daughters own right and all diabetics the ones that knows best is ourselves as only we can control it, after all its 24/7 for us even in our sleep.

So the trick is to get her to want to control it herself, give her the power give her the choices, let her educate herself.
(on the other side imagine if I told you right now you can never drive again) (Loss of freedom) it changes everything and it would seem incredibly unfair ( hence drivers caught during bans)

There are many courses available for teaching diabetics how to monitor and control thier diabetes and how to make it easier to manage. for exsample if your daughter is on novo rapid, there are certain meals she can eat that require no insulin to consume. ie scramblkes eggs or eggs in general, plain tuna and salad the list is huge, and some of the meals that do you can swap around so if you have to inject you can take less insulin meaning less pain.

a Pump is not the answer at all its cumbersome, can be irratating, its not worn through out the night, can be ripped out during nap or fall or anything like that. Can be incredibly painful, not ony that but I myself have know two friends Diabetics to use it and have died from being overdosed in malfunctions.

My main Priority for you and your daughter would be to get those communication lines open again and get them stronger, to do this take her out make her feel important explain that you are willing to learn with her( and go through it with her) be a listener and an advisor(when she asks)

start going to the hospital more frequently and really push your medical support on finding the right solution for her maybe diffrent injections that you only inject once or twice a day.

The positive side to it (restored relationship and bond)
There will be a cure coming in our life time

Reccomendations:
Seek councilling (Possibly private)
Seek education (private or nhs BERTIE Course)
Seek more support ( From medical staff - Put foot up bums)
Restore relationship!
Time is precsious not to be wasted on war with eachother, there is enough of that already.
Find alternatives (to pumps or multiple jabbings if it helps)

I am Alexander St Clair Jones Diabetic for 27 years through not fault of my own
attempted suicide twice
KTD more thank i care to share
But I am making myself better beacuse when that cure comes I wanna be first inline for it.
(to save people like your daughter)

yours faithfully
A. Jones

 

[lilyfleur]

Following on from the last post, the insulin pump is not "cumbersome and irritating" to everyone, and it IS worn through the night- I would never go back to injections personally. That said, if your daughter was to not change the infusion set when it runs out of insulin, she'd go into DKA very quickly so this may not be the best option.

As another type one diabetic who has had it since 13, as well as depression and needle phobia (and 'diabulimia'- binge-eating and purposely taking less insulin than needed or missing doses altogether, originally to lose weight and now because I feel out of control) I sympathise with yours and your daughter's situation. What I will say is that if she is intelligent and aware of the damage being done like you said, reminders will likely make her feel much worse about the situation. My self-destruction was partly triggered by doctors banging on about how I would go blind (I also have maculopathy now) and when you feel powerless to stop it, you think "what's the point in doing injections that I'm terrified of doing, when these complications will happen anyway... I may as well try to have as normal a life as possible now.". Of course it is irrational and dangerous, but when you feel helpless it doesn't feel like there is a solution. I can't say I've found one yet myself, but talking to others who struggled helped me to start getting back on track and at least trying to help myself. I found talking to diabetics who coped well made me feel like more of a failure. Also, focusing on the positives of mildly improved control (e.g. feeling SLIGHTLY less tired) was more effective than trying to avoid complications of worse control.

Your daughter may not have an issues regarding weight and/or eating, but I would still recommend looking up Diabetics with Eating Disorders as they have fantastic advice for carers/parents/healthcare professionals regarding language to avoid that may make people in that situation feel worse, and suggestions to help.

I wish you and your daughter all the best

xXx

 

[mc9]

She seems to think a pump will be better for her, as it's quicker and easier and less painful than injecting

Maybe a pump would be worth trying then

 

[mc9]

I don't know which way to turn, my daughter was diagnosed Type 1 just before her 13th birthday 7 years ago. She has never managed her diabetes well and constantly runs too high for her meter to even give her reading. Her poor diabetes management was the cause of many arguments as a teenager. She ended up leaving home to live with her father when she was 15, but he never helped her with her diabetes. She has been in hospital at least 20 times with DKA over the years, but doesn't seem to care. She also suffers with mental health issues and depression, I believe she has borderline personality disorder, but it has never been diagnosed. She was in a bad place earlier this year and took 2 overdoses ending up in hospital. She refuses to accept any help from the mental health team. She is now 20 years old working full time and living on her own, but we are only 5 minutes away for support, and see her at least once a week. She seems to be in a good place mentally at the moment, however she has recently been told she has Diabetic Maculopathy. Even this has not shocked her into looking after her diabetes. I went with her to see her diabetic consultant recently and found out that whilst she is meant to have 4 injections a day, she only has maybe one every few days. And really could not see how she could improve this! I was shocked, I believe she is still in denial and is hoping that if she ignores it, it will go away. I asked about a pump, there is a year long waiting list, but she doesn't meet the criteria, but surely getting some insulin into her would be better than none, the consultant agreed. I cannot understand why the health professionals hear what she says, but will not offer any alternative to daily injections, they seem happy to watch her slowly kill herself. Any advise? Is hypnotherapy worth a try? Should I get her a pump privately? I want to help her but don't know which way to turn. Please can someone help me?

Maybe you could try introducing her to this forum

 

[teresa54]

I don't know which way to turn, my daughter was diagnosed Type 1 just before her 13th birthday 7 years ago. She has never managed her diabetes well and constantly runs too high for her meter to even give her reading. Her poor diabetes management was the cause of many arguments as a teenager. She ended up leaving home to live with her father when she was 15, but he never helped her with her diabetes. She has been in hospital at least 20 times with DKA over the years, but doesn't seem to care. She also suffers with mental health issues and depression, I believe she has borderline personality disorder, but it has never been diagnosed. She was in a bad place earlier this year and took 2 overdoses ending up in hospital. She refuses to accept any help from the mental health team. She is now 20 years old working full time and living on her own, but we are only 5 minutes away for support, and see her at least once a week. She seems to be in a good place mentally at the moment, however she has recently been told she has Diabetic Maculopathy. Even this has not shocked her into looking after her diabetes. I went with her to see her diabetic consultant recently and found out that whilst she is meant to have 4 injections a day, she only has maybe one every few days. And really could not see how she could improve this! I was shocked, I believe she is still in denial and is hoping that if she ignores it, it will go away. I asked about a pump, there is a year long waiting list, but she doesn't meet the criteria, but surely getting some insulin into her would be better than none, the consultant agreed. I cannot understand why the health professionals hear what she says, but will not offer any alternative to daily injections, they seem happy to watch her slowly kill herself. Any advise? Is hypnotherapy worth a try? Should I get her a pump privately? I want to help her but don't know which way to turn. Please can someone help me?

When I went for training the nurse showed us some really gross pics of people with black toes.. amputated limbs...and lots of other complications, comas, strokes from high blood sugars..plus a person and their seeing eye dog ...seeing these really did get me to thinking

 

[LauraR88]

I have to say I use the iport as I hate taking my injections, I have a massive needle phobia (to the point there's only one nurse that can do my bloods as I make everyone else nervous!) I've been through the denial stage as this was my worst nightmare, but I knew in the back of my head that if I thought this was bad, then the complications that would follow if I didn't buck up my ideas would be a whole lot worse.

I was really thankful when my nurse suggest the Iports, and although it took me 2-3 hours of having to build up the courage to insert the iport they are the best things every! I don't have any anxiety when it comes to do my injections now. Plus after years of my nurse asking if I would like to try the pump and me point blank refusing saying it would never happen............ we have started having the conversation to get me on the road to having one. Whilst I've heard it's a lot of work in the beginning I believe in the long run it will pay off.

I totally agree with the person that mentioned earlier about introducing your daughter to this site as I have found it has helped me feel like I am not alone, eased some of my worries and it seems everyone is very supporting whenever you need help

 

[snowleopard]

Teenagers rebel and maintaining an insulin regime is something they often view as an aspect of their lives where they can take control away from their parents. Psychologically it may have the same roots as eating disorders. I have a friend whose daughter was diagnosed in her early teens, around the time her father left them for another woman. The girl was completely screwed up through her teens, often expressing her distress by refusing to take her insulin. She is now in her 30s and has finally turned her life around.

Unfortunately this is not an instance where you can wait for them to get over their angst as the condition may cause permanent damage in the meantime. The message you need to get across is that your 'interference' is because you want her to be safe and happy, not because you want to control her, stop her having fun or are jealous of her youth etc. It's a message that is obvious to a parent but incredibly difficult to get across to a young person. My best attempt is to ask them why they think you are pushing them to act responsibly and make them think it out for themselves.

 

[Juicyj]

A nurse once told me to right down some advice that I would give to a young child who didn't want to take their shots, and the reasons why it was a bad idea. She then asked me to read it out and said, would you listen to that advice from another diabetic if you were a child and I said yes.

What an inspiring post to read, thank you for writing this. I would love to know what you wrote if you can share this ? From what I've understood about denial the turning point is acceptance, and to get past the psychological issues which cause the self abuse and to then take ownership.

a Pump is not the answer at all its cumbersome, can be irratating, its not worn through out the night, can be ripped out during nap or fall or anything like that. Can be incredibly painful, not ony that but I myself have know two friends Diabetics to use it and have died from being overdosed in malfunctions.

I have to admit I thought it would be cumbersome before using one, however it's not cumbersome at all, can be discretely hidden under clothing, it has to be worn at night as it's administering basal insulin doses so it's a 24/7 thing. It's not painful in any way, and the cannula sets are so secure it's very difficult to tear out the set, I haven't done so yet. Using a pump does require vigilance and effort to ensure it's working and so the user has to take alot of responsibility to keep on top of it but I have only positive things to say about pumping so please don't be put off

 

[nayhutch]

Hello, I'm 24 and have type 1. I related to your daughter from your post as it took me a long time to take my diabetes more seriously, and I know I still have a lot more control to gain. I don't know exactly what would help your daughter but if you'd like to ask me any questions you had to try and gain some insight into how she may be feeling and how you can move forward. I'll have a think about what might have helped me at an earlier stage too. If you are able to private message me please do. I couldn't work it out!

 

[Roxyharford]

I was very similar to your daughter and have to say that I really don't think a pump is the answer. I tried a pump and hated it, It made me feel more affected by my diabetes and less in control, it made me feel uncomfortable having the pump strapped to me and you could see it wearing certain types of clothing and I used to get the wires caught on door handles, chairs etc and on numerous occasions pulled the pump out of myself purely by walking when it did attach to household fixtures with out being aware until the needle was yanked out of me. Due to my poor control I affected my fertility and suffered 6 miscarriages in total and this had a detrimental affect on my mental health. The answer is learning to manage the diabetes rather than it controlling you... btw I now have 4 children but it's taken me a long time and a huge amount of hard work to get my health back on track. I also didnt listen to the health professionals as thought I knew better than them as I actually had Diabetes and they didn't, I thought they'd just read a book or been on a course so perhaps she needs a health professional she can really bond with or a buddy she can learn to trust and respect to get her on the right track. Good luck x

 

[Aisling]

I have been where your daughter is. I thought nobody knew what I had to deal with dat to day. Meeting other diabetics in my 20's helped a bit because I realised that the perfection and control expected of me where not as easy or sometimes possible. My pump gave me confidence and councelling gave me perspective. Now I look back and realise that I was my own worst enemy.