Looking for advice. Our son was diagnosed in 2006. He is now 18, and away at college. His last A1C was over 12, and he has been hovering in that range for over 2 years now. He managed his diabetes much better when he was first diagnosed, but now seems to just be in denial of it. We feel like we have tried everything to help and support him, including counseling, but he still simply does not consistently manage his T1D. It's very hard to sit back and watch the son you love so much do permanent damage to his body. It's killing him, and us. He is on the pump, and CIGM. He has all the tools, knows how to use them, and knows the consequences of not managing this. He simply isn't doing it. We are desperate for ideas on how to help him help himself. We know we can't do it for him, but can't just sit by and watch either. Any suggestions or ideas would be much appreciated. Thank you.
This is extremely common for teens and young adults with diabetes. Just like teenagers drive too fast and party too much, teens with diabetes often get reckless with their control. This post and the responses capture it well.
Through my teens and college years my A1c was 14+. In the summer before my junior year of college I was hospitalized once for a severe hypoglycemia and the next week was in a DKA coma from severe hyperglycemia. By the grace of God I didn't kill myself. I lived in diabetic craziness until I was about 25 and started to mature. At some point I realized it was stupid to waste so much of my life recovering from highs and lows. It was about the same time I realized binge drinking and partying was not worth it.
I don't know how to encourage someone to do better in this situation. The only advice I can give is to tell your son you love him and offer to help if there's any way you can. It's also fair to put limits on him, like that he needs to test his blood and be between 100 - 220 before driving a car.
Fear of complications and "helpful" advice from my parents and doctors did little to help me. Instead I realized I felt better when my blood sugars were better overall. I stopped feeling overwhelmed by the need to be perfect and focused on testing to see if I needed a little insulin or a snack so I had the energy to live my life.
Know too that a lot of us survive the stupidity of our youth. I'm 40 now and have no diabetes complications and test and bolus appropriately. Wish I could have come to peace with my diabetes earlier, but it took a while for me to do it.
Thank you for your response, and for including the link to diabetesmine.com. Both were very helpful. My son will be home this weekend from college, and I plan to discuss all of this with him. Your words, and those from all the other posts gave me some hope that he will be okay. It's very hard to watch someone you love go through this. I would take his diabetes in a second if I could, but obviously it doesn't work that way. Thanks again for taking the time to respond. It helped a lot.
Your son is lucky to have a good dad like you. He'll realize that in a few years!
It's hard to watch your kids struggle and I can't imagine how stressful it must be when the stuggle is life threatening.
Take care. -Jenna
Thanks, Jenna. Very kind of you to say. I appreciate your help, and we will be ok. Take care of yourself.
I read this post the first night you posted it and I've been thinking how to respond but the only thing I can think of to tell you is that sometimes just knowing that you have family that cares about you is enough. It may take him a while to come out of what he is feeling. Personally speaking; I needed to go through all of the motions... even though I knew my family was suffering while they were watching me do harm to myself. And like you they tried to help me with all different methods but, it didn't matter because in my head I hated everything about diabetes, I wanted it to disappear and the only control I had with it was to be "out of control". I know that sounds sick but at the time that is how I felt about it. I was diagnosed in November 2000 at the age of 25 and I was in denial of my diabetes for probably 11 out of those 13 years.
Things that helped me to get through it were forums and messages boards like these, and talking to other people who were living with diabetes. Hearing that others were going through the same things as me, made me feel less alone and more normal. The only other person I knew with T1D was my moms sister and at that time she was going through kidney failure for the second time.
Having my son also put things into major perspective for me. It was the first time since my diagnosis that I was concerned about living a long healthy life WITH diabetes. That I had to take care of myself for my family, so I could see my son grow up.
Sometimes, things all come into place out of no where. I hope and pray that your son will have something to strive for in his life that will help him overcome what he is feeling.
Maybe try encouraging him to join TypeOneNation to talk to other teens? Have you ever heard of the Friends for Life Conference? It is held down in Florida every year during July and a great place for teens with diabetes to meet other teens. Or check out your local JDRF chapter using our chapter lookup tool to see if there are support groups for teens in your area.
In the meantime if your son ever needs someone with diabetes to talk to I am available through email gina(at)t1n-migration.10uplabs.com
Hang in there! I hope everything gets better for your family very soon.
Thanks for the response. Much appreciated. We will continue to do all we can to support our son, and we are fighters, not quitters, so we will persevere. Again, thanks for taking the time to respond, and I wish you all the best in your daily management of T1D. We will also continue to work towards a cure, for our son, and everyone who's lives are affected by T1D. Keep the faith.
I have three boys with T1. The older two do a decent job with their diabetes. #3 doesn’t. He is 18 and will go away to college next year. I think his highest A1C was in the 11’s, a year or so ago. Working as a counselor at the local diabetic camp helped some, but there’s nevertheless a fundamental disconnect. The adolescent mind just doesn’t work like an adult’s. I don’t have anything specific to offer except I hope you will tell him you love him as often as possible.
I know its hard. My 18 yo lies a lot and its hard work to hang in there with him. He rarely qualifies for his allowance, and stays chronically short of money. I worry about enabling him. He is a decent student and will go away to college next year. He still doesn’t have his drivers license. You might see my posting about that earlier today. Non-compliance with an 18 year old man is tough problem. I have older brothers and a passel of nieces and nephews, and my observation is, that while it takes longer for some than others, most everyone grows up sooner or later. I am very worried about next year so I will be following this thread and thinking about you.