burnout

[dbryant]

My son is 18 and has had diabetes for 15 years.  He's a pump user, but the last couple of years have not been good.  He refuses to check when he's supposed to, is not in good control and I frankly am lost, and don't know what to do.  He is after all an adult, but how do you ignore it when you know he's playing with fire?  Any suggestions?

thanks.

[JDRF-Team-wak]

I am not a physician, but the mom of a type 1 diabetic and the daughter of a type 2. I understand the frustration.  My mom does not like to take care of her diabetes. It frustrates my sister and me. We try to remind her of the complications, of which she has had 2 mild strokes and a heart attack; we also remind her that she now has 2 grandchildren.  These scare tactics usually work.  Unfortunately you cannot MAKE people take care of diabetes they have to want to.  I am told that teenagers go thru cycles of not caring for their diabetes.  Hopefully this is only a phase.  

my daughter is stilla t the age where she listens to me.  good luck .

[Karen1968]

Hi there,

Yes it's very difficult to watch your son go through this but I will tell you I went through the very same thing when I was a teen.  At 18 I was admitted into the hospital with Keytone Acidosis.  Luckily I don't go into a coma when I have high's and low's but some people do.  But let me tell you his state of mind. I have been a diabetic since I was 5 years old and am now 36. For most of my life I have been looking for ways so that the diabetes does not control me but I control it. I'm still fighting that today.  When I was 18 I took over from my mom's constant care and nagging and it was a free for all for a while. I was desperately trying to be "normal" if you will.  During my scare I was put into a program which helped me to control things a little more. Of course I had to still take insulin but a very nice and knowledable lady showed me how to adjust my insulin so I could eat and drink the things that other people could and most importantly at the times I wanted. All it took for me was to change my insulin and get the permission I needed to eat when, where and what I wanted and that's all it took. I also went into a diabetes support group as well.  Now 3 children later I present with no problems with the exception to my recent baby losses due to my age. My health is good and I am able to control my diabetes with ease.  I hope that he does not have to have a scare like mine to change his ways but give it time and he will begin to take charge of his diabetes again. He might just need a break and attempt to be "normal" for awhile. My suggestion to you is to make every effort to talk to him about your concerns in a loving and caring manner and make him aware of the consequences, but ultimately your right he is 18 and will make his own choices. If he does not respond to you find someone that he will listen to and have them talk with him about it. Also talking with the doctor about possible changes that will him to decide to take charge can be helpful too.

Well I know it's long but I hope I helped.

Karen

[mawilliams]

dbryant,

My husband was diagnosed with juvenile diabetes at 10 and is now 29.  When we got together 4 years ago, he was not in a good place either.  Since he was diagnosed, his mother made it her responsibiltiy to take care of his diabetes rather than teach him to be responsible.  He never had to think about taking a reading or about when and what to eat as she was a constant reminder.  This pushed him away and caused him to rebel.  When he was 24, he finally moved out of the house.  Since he never learned to remind himself of his responsibility, he didn't take his readings for several months.  By this time, he had been on an insulin pump.  He ended up in the hospital with keto-acidosis.  Luckily he did not go into a coma, but it did scare him a bit.  He stopped drinking and took his readings and ate better, but only for about 9 months.  Still at his age, his mother would constantly ask him if he had taken his reading and was always on him about his diabetes.  I myself, tried to back off a bit as I knew how it only made things worse to push.  It was very difficult.  Finally after 8 days with 5 lows I made an appointment and begged his doctor to help me.  I went with him to that appt and the doctor told me that I needed to let him be a man and back off.  After my husband saw me in tears because of his doctor, he realized the pain he put on his family and he finally took charge of his diabetes.  It has been almost a year since that day and so far so good.  He has his moments as I am sure all diabetics do, but I don't have to remind him to take his readings and he keeps good numbers.  I guess what I am trying to say is try and give him his space, but keep an eye on him so that no harm comes to him.  He will eventually find something to make him see how important his life is to himself and his family.  From what my husband says, it is difficult growing up as a teenager with diabetes.  Just as Karen said, find ways to let him eat and do what the others are doing and adjust the insulin to that.  It does help.

[dbryant]

I really appreciate the responses to my questions regarding my son and his diabetes control.  I am going to print these responses for him - maybe it will help.

[TonyAlmeida]

Hi - I know what he is going through.  It's the dangerous feeling where you just want throw your arms up and go: "I hate this. I'm sick of this. If my body is so bound and determined to ruin itself - so be it.  Life isn't worth all this pain and hassle.  All the needles, the pump infusion sets that give NO DELIVERY alarms, the finger sticking.  Maybe my next life will be better if I let this one wind down and stop."  It's where Diabetes feels like a 1000 pound weight on your shoulders - especially when you realize you have to endure the pain the rest of your life and you can no longer live as carefree as most others do.  I have, by no measure, fully come to terms with my Diabetes (diagnosed last year in 03).  I probably never will fully accept it as a part of my life.  Diabetes just wears you down.  Unfortunately - when you feel burned out, the last people you want to talk to are other Diabetics or support forums.  My parents got tough with me though - when they finally got tired of me saying over and over again how worthless my life had become and how Diabetes had robbed me of just about everything .... they said "Fine.  Don't check your blood.  Don't pump insulin.  Don't count carbs.   But don't expect us to feel sorry for you, or to pity you, or visit you in the hospital.  Diabetes took away your Pancreas's ability to produce insulin - and that's all it did.  You have a pump and can work around that.  But it will be YOU that destroyed your own life."  It kind of woke me up when they told me that and I went on with life.

[jdrf team dm]

Dear dbryant,
I am so sorry you are going through such a tough time. I understand what you are going through with your son, as I have been dealing with this since my son was 11.Your son may be having an episode with depression. I truly believe that anyone dealing with a chronic illness can have some levels with depression. While I am not a physician and can't give you medical advice, I can tell you my own experience. My son has experienced the same thing from 11 to 20.

You have recieved some very excellent advice, but I am coming from a different point of view. While my son had a great medical team for his diabetes, we realised that he was suffering from depression. He found a councelor that dealt with both type 1 and depression. It has created a profound change in his life.

I know how lost as parents we can feel. Believe me, you are not alone. I would like you to contact www.jdrf.org and click on life with diabetes and the online diabetes support team. This is a one on one line that could help you with additional support. I would like to give you additional information.

In my Thought's
dm

[pumpgirl03]

I haven't looked at the forum in a while but when I saw burnout I just knew I could relate.

I just turned 19 and let me tell you that last 8 years have not been easy. When I was first diagnosed it was kind of surreal and I did what I was supposed to without missing a beat. But after about that first year I started to realize that other kids had ,it in my mind, a lot easier than I did. I was diagnosed at age 11 and my full blown rebellion started at 13.

I didn't take care of my diabetes (DM) didn't take my shots, check my blood or anything. The good Lord was looking out for me because it is amazing I didn't go all the way into Diabetic-ketoacidosis (DKA) and even die. I always caught it before that stage and went to the ER and would get rehydrated.

I lied to my parents, friends, doctors and anyone else who asked me if I was doing my part. I always said that there must be something wrong with me or the insulin. I did this for maybe a year and then one day I just changed my mind and decided to take care of myself. I have done pretty good for the past 6 years but this year for some reason seems especially hard. I haven't been testing as much as I should and I can't really give anyone a REAL reason. I have been giving insulin with my pump. I am just trying to not go into a full  blown rebellion. I think I will be ok I just need a semi break and so maybe this Hb A1c won't be as good as the last one.

My dad doesn't seem to understand so there are probably a a lot you who think I am just being lazy maybe I am I am not really sure but I know what your son is going through!!! I think as a teenager we just get to a point where enough is enough but the key is deciding how long one is willing to endanger their health. I know my parents tried to talk with me and sometimes it was just annoying so I think it will all have to do with when he is ready to take care of himself again. My theory on this stage of rebellion for lack of a better word is that I am now an adult and some of the real world realities are finally setting in.

I know this was long but I hope this will help a little! I know it has helped me a little to get all this out in the open!

Pumpgirl03
Diabetes Advocate

[andy83]

Well, this is my first time on here. So - hello everyone.
-I'm 20 and was diagnosed at the age of 4. Things really seem to pile up. I'm in college away from home so that doesn't help much either(as far as stress goes).
  It's kind of a difficult situation to be in - for anyone involved. I think some of the best help comes from positive support from those closest around you. I've been through enough times of not taking care of myself and thinking that it's simply not worth the effort and time to realize that in the end it's worth it. I think that a lot of the time, the best things to hear when you're in a position of "burnout" is a little personal positive encouragement from those around you. Rather than hearing the sometimes usual responses of "you shouldn't do that".
  Even with the utmost amount of support, it takes a very large part of personal responsibility as well. I still have to struggle with this. I just tend to remind myself that I do in fact have a choice.
  Well, hope that has helped someone. I'm going to finish my diet soda and maybe get some homework done! :)

-Andy

[jdrf team dm]

Dear andy83,

I wanted to welcome you to our forum. Your response is quite insightful and I would like to hear further comments from you on other questions. I also believe in positive encouragement from family and friends.

I truly believe you and the others commenting on this  important issue will be of great help. It can be called burnout, depression or even denial, but I feel we must explore this problem. We all learn from others dealing with type 1 diabetes. Again, I want to thank you, Andy.

Please keep in touch,
dm