In need of some advice on how to say the right things

I'm a parent of a type one diabetic I also have type one diabetes as well my son is 21 yrs old was diagnosed at 9 yrs old. He was very responsible in the care of his diabetes at such a young age however he has gotten so far off track I'm so sick w worry . He is currently on an insulin pump but doesn't check his sugar often maybe once a day he bolouses on a guess so therefore his sugar is always high.The more I gently remind him of how important it is for him to check his sugar or take his insulin he responds by telling me he is grown and I don't need to tell him what to do . His past a1c was 11 which is really high. He currently has diabetic retinopathy not severe enough to require surgery but has been warned that he needs to get his sugar under control asap . It seems the more I tell him to please take care of himself the more he resists I'm totally heartbroken watching my son destroy his body and I can't do anything about it . I see a therapist weekly who recommends that I back off and not tell him anything regarding his diabetes but how can I pretend it doesn't bother me ? Please any feedback will be appreciated!

 

Take heart because you are certainly not alone!! At FFL this year I attended a workshop on communication and parenting teens with type 1 diabetes. It was really fantastic. They shared things like:

- Instead of asking “What did you eat?” and “What did you do wrong?” after an out of range reading, say, “Thank you so much for checking,”. Focus on how to address the out-of-range number in the moment later brainstorm ways do better in the future.
- Try to stay positive and avoid words like "cheating" or "being bad"

Dr. Jill Weissberg-Benchell is a CDE and CWD faculty member talks alot about this topic and taking a look at her teachings might be really useful. Or Marissa Town CDE (Jeff, founder of CWD's daughter). JDRF also has a guide for parenting teens with T1D. I can't post the link here but if you google it the pdf link should come up. That might have some useful tips.

Hopefully others can chime in with what's worked for you them!

-Melody

 

Well, he's 21... nagging isn't probably going to get you anywhere. Does he have a CGM? It can be a game changer. Perhaps he could discuss it with his endo, if they haven't already suggested it. The dexcom G5 is user-friendly, virtually painless to insert and long lasting for most people. I'd try that route.

Good luck.

 

I can totally relate......

I am so sorry to hear of your worry and really wish I could give you the advise that you need. What I can say is that I completely relate to what you are experiencing and as another responder said, you are not alone. My son was diagnosed at age 7 and is also now 21. His compliance is as you describe with your son. He does have a CGM (they really are great) but does not wear it all the time. He is struggling with having this disease so seems to cope by being in denial. He was starting to be more accepting of it but then was diagnosed with Celiac Disease as well. I know he is overwhelmed but he absolutely does not want my input. He becomes very annoyed and, like your son, says things like, "Mom, I'm not five!" I am extremely anxious about his health situation and really don't know what to do either. I have seen a couple of counsellors. One said to back of completely. The other said to set limits (take the keys to the car etc.). I am currently looking for a new therapist to help me to cope with the stress, guilt, sadness.....and see if they have advise on how to support my son in a way that he will not resent. I have tried backing off completely for long periods of time, positive feedback, getting my husband to do the communicating, offering that he see a counsellor, ..... I think that these things (or just his maturation) have resulted in his making small improvements. He attends his clinic appointments, gets his blood work done and communicates with his nurse on his own. There is still a very long way to go and, of course, I worry about long term damage to his body by the time he really takes control of both of his diseases. Reading your post did help me a lot because so few people understand what we parents of T1D kids go through (especially when they are non-compliant) and at least I don't feel so alone now. I hope that you feel at least a small bit of comfort in this as well. Watch for small improvements and celebrate those. Be good to yourself. If I find any answers with my new therapist, I will certainly share them.

 

At 21, he is an adult and you can't make him take better care of his T1D. The same can be said about teens (I can't force my 14-year-old daughter to actually count carbs instead of SWAG-ing, pre-bolus, check her Dexcom more often and correct, utilize temp basals when appropriate, etc.); I can only remind her. Since I am not physically with her 24/7, I cannot physically make her do anything. (Even if I spent every waking moment in her presence, I doubt I could, physically-speaking, force her to do anything: she is already 6 inches taller than I am and is likely stronger than me.) She already knows about all the consequences that can occur as a result of poor management. Unfortunately, many young people are simply not able to envision needing to deal with complications "x" years (or even months or days) down the road. A good example of how "Youth is wasted on the young." All you can do is set a good example and positively reinforce responsible behavior by complimenting it. At 21, I assume your son is not still living under your roof or is being financially supported by you, so you can't exactly ground him or take away his car keys, etc. So, as hard as it is, you simply have to let go and let him make his own decisions and deal with any consequences he may experience due to poor choices. I have a 27-year-old daughter, and I know how difficult it is to watch an adult child "learn things the hard way". I have found that things work out better when I remind my daughters that I am available to assist them (if possible) and will offer them guidance or an opinion when asked. But I try to stay out of my adult daughter's life unless asked (for the most part.) When I absolutely cannot keep my mouth shut when I observe her making a poor choice, I try to speak my mind briefly and say something along the lines of "I'm concerned that "y" may happen if you choose to do "x", so I'm going to give you my unsolicited opinion and then shut my mouth because you are responsible for making your own decisions. And regardless of what you choose to do, I will always love you."