By Jean Roemer, MSN, MN, CPNP, CDE | December 3, 2011 9:00 am
Virtually all parents and their teens have conflicts at some point. Teens are at the stage in life when they want and need more independence to explore who they are and who they want to become as adults. This exploration often includes questioning (or outright rejecting) their parents’ beliefs or lifestyle and trying out new ways of thinking and behaving.
Parents, while often proud of their teen’s growing maturity and independence, may also disagree with some of his new attitudes or fear that his behavior is destructive or will have negative consequences down the line.
In teens with diabetes, the topic of diabetes care often becomes a focal point of parent–teen conflict. Parents may want their teen to take on more responsibility for his diabetes care, and teens may want that, too. But the stakes are high, since not caring for one’s diabetes properly can lead to serious consequences. And even a motivated teen may feel overwhelmed at times by all of the daily tasks that need doing or forget to do certain things. What’s more, many teens are not motivated to take on their daily diabetes care; they may feel embarrassed or unfairly burdened by having diabetes, they may be preoccupied by other interests or concerns, or they may simply not feel like doing the work it takes to manage their diabetes. Whatever the case, when diabetes tasks don’t get done and parents find out, conflict typically erupts.
Nothing will make diabetes care or getting through the teenage years smooth sailing all the time. But there are ways for parents and teens to work together for better diabetes control without continual nagging or frequent angry outbursts.
The following story is a composite of several real cases that I have dealt with at the large pediatric hospital diabetes center where I have worked for the past 30 years. As you read it, think about whether you and your teen are in a similar place and whether the approaches modeled here might be helpful to you.
Fifteen-year-old Jake and his mother are waiting in an exam room for his regularly scheduled three-month appointment to follow up on his Type 1 diabetes. When I walk into the room and greet them, there is nodding acknowledgement of my presence, but otherwise complete silence. The air is thick with tension as Jake sits slumped on the exam table with his face hidden under his ball cap and Mom sits on a chair with her arms crossed in front of her.
“How are you doing today, Jake?” I ask. Usually a somewhat quiet but articulate young man, Jake mumbles something that sounds like, “OK. How are you?” At the same moment, his mother begins to speak.
“Jake has things to tell you. He’s not counting his carbs or measuring anything. I find candy wrappers in his room and under the sofa, and last night we uploaded his pump and I see that he’s not taking all his bolus insulin. I am so frustrated with him. I remind him all the time, and he tells me he is doing it, and I see that he’s not. He falsifies numbers and tells me he’s taken his bolus insulin when he hasn’t. I am so afraid that he is going to lose his kidneys or his foot or something. I can’t stand by and watch him get sick and die, but I don’t know what else to do. I’m not with him all day, and even if I were, I can’t do it for him anymore. I just worry all the time. He yells at me for reminding him, lies to me, ignores me.”
I glance up at Jake, who remains silent. Other kids at this point might argue with their parents, blame them for the missed blood glucose checks or boluses, roll their eyes, or even start crying. When that happens, I try to help both parties calm down, stop yelling or crying, and agree to listen quietly while the other talks so that constructive dialog can take place.
“OK, OK,” I say. “I’m getting the picture. Let’s step back for a minute. Jake, how do you respond to that?”
Being willing to hear your teen’s perspective — without judgment or interruption — is an important step toward working as partners in his diabetes care. He may be having problems you don’t know about: Maybe he’s depressed, doesn’t want to (or know how to) share his diabetes with a girlfriend, or is afraid of becoming hypoglycemic when he’s active. Maybe he’s just had enough of diabetes and needs a less complicated diabetes-care regimen for a while. (His health-care team should be able to help with that.) Some kids cannot verbalize why they are not taking care of themselves, but others are surprisingly self-aware.
Given the opportunity to speak, Jake begins, “It’s not like that!”
“What is it like, Jake?” I ask.
“I don’t know; I mean to do it. I think I’ll do it, but I forget.”
I say, “But I’ll bet you do remember to do the things that are important to you. Am I right?”
Mom says, “Oh, yes!” Jake nods in affirmation.
“So that tells me that you don’t really believe this is that important right now?” I say.
Jake is silent.
“So,” I say, “Let’s see if we can figure out some ways to make this more important so that you will take better care of yourself.”
You may not like what your teen has to say, or you may feel that it doesn’t get you any closer to a solution. Now what do you do?
Before voicing your disappointment or disapproval, find something positive to say. When I ask Jake’s mother whether there is anything that Jake is doing well, she reflects for a minute then smiles and says, “He’s really a good kid. Never gets in trouble, is a good student, practices his drums and trumpet, and doesn’t do anything wild.”
“What about with his diabetes?” I ask. “Can you think of anything he does well there?”
“Well, he’s good about changing his pump site regularly and knows how to work the buttons and pump better than me. He doesn’t sleep until noon, like most of his friends, but gets up, takes insulin, and eats early without much urging every day.”
Hearing what he does well is much more motivating to a teen (or an adult) than hearing what he does not do well. It may help him to say more about why he’s not carrying out his diabetes care plan, and it may encourage him to try to do better at some of the tasks he is not currently doing well.
In addition to stating what your teen does well, acknowledge that caring for diabetes involves a lot of work.
As I say to Jake and his mother, “There are so many areas of diabetes to consider — carbohydrate counting, eating well, monitoring blood glucose, monitoring ketones, preventing or treating lows, keeping records, taking insulin or maintaining a pump, getting in for appointments, and a lot more. It’s rare for kids and even adults, too, to do all aspects well. In fact, I don’t know anyone who does everything perfectly.”
It’s important for parents to remember that diabetes management can get tougher in the teenage years. The hormones that cause teens to grow and develop also cause insulin not to work as well, so the diabetes regimen that has worked well for years may need to be adjusted just as the teen is taking over more of his own care.
In addition, going through puberty involves more than just physical changes; it’s an emotional time, too, and many kids have difficulty doing what they need to do at this time of life. It’s pretty common for kids with diabetes to slack off in their self-care efforts when they reach adolescence.
This is stressful for parents, but it may be reassuring to know that it’s a normal stage that won’t necessarily last forever or lead to long-term diabetes complications. On the other hand, it’s not an excuse for teens to ignore or neglect their daily diabetes care. Parents and teens need to negotiate how critical diabetes tasks will get done, where, when, and by whom.
You may think your love for your teen is obvious, but it never hurts to state it out loud. For example, you might say, “I care so much about your diabetes care because I love you and want a long healthy life for you!” Even if your teen rolls his eyes at this, it’s likely he’s taking in the message.
Let him know what the rules are: “The only way I am going to relax and get off your case about all this stuff is for you to do what you need to do to take care of yourself. Therefore, the ball is in your court. You have some choice about whether to live with harassment or not.”
Assure him that you’re there to help: “Your father and I, your sister, your medical team, and maybe some of your friends are here to help. We are your support team! We are rooting for you and want you to do well. But you’ve got to be the team leader. You need to tell us how we can help you take charge of your diabetes.”
Often, teens have their own solutions to problems that are more creative or practical than anyone else’s. In addition, if they are the ones to suggest it, it is more than likely an acceptable solution.
Back in the exam room, I say to Jake, “So, Jake, how would you like your Mom and Dad to help you? What could they do that would help you stay on track?”
Jake takes some time to reflect, then says softly, “I really hate looking up carbs and figuring it out. You used to write it down for me, Mom.”
Mom responds, “I know I did, but how are you going to learn to do it for yourself if you don’t do it?”
I interject, “Well, Mrs. P, he’s telling you how you can help him right now. And I agree that he is not going to learn to do it if he doesn’t do it. But for right now, in an effort to improve his control, and because this part is hard for him, do you think you could talk about how you might give him some help in this area?” Mom nods.
“Anything else, Jake?” I ask.
He says, “Just keep reminding me.”
Mom laughs at that. “You get smart with me and nasty! And you don’t do it!”
I say, “But you are hearing that in spite of his immediate response, he really wants you to remind him. And Jake, when your Mom reminds you, she is doing so because she loves you, so your job is to treat her with respect and do it.”
Jake says, “OK, I’ll try.”
Scare tactics — threatening your teen with kidney failure or blindness, for example — don’t work for anyone. But it’s still important for teens to know that their actions now can have both short-term and long-term effects.
People with frequent or chronic high blood glucose over many years are the most likely to develop the devastating problems of eye, kidney, cardiovascular, and nerve disease, which can potentially lead to erectile dysfunction, heart attack, stroke, and amputations. Every little bit a person does to keep his blood glucose level in the near-normal range can lower his risk.
It’s hard for teens (and often for adults, too) to believe these things could happen to them. But often, teens can be disciplined about doing something today because it will benefit them sometime in the future. For example, many kids are willing to work hard in school so that they graduate from high school and can go to college. Or they are willing to save money over months or even years for a big expense such as college, a computer, or a car. Student athletes train and go to practice so they’ll do well later in competition. So it’s not unreasonable to ask teens to take steps now to raise the likelihood of good health in the future.
Remind your teen of the short-term benefits of good blood glucose control, too, such as feeling better generally, having more energy for school and other activities, and receiving more privileges when parents are confident that the teen’s diabetes will be taken care of. You might also choose to reward your teen in some way for performing certain tasks or maintaining certain behaviors over a set period.
Taking ownership of one’s diabetes means accepting it and making it a priority. It doesn’t mean dealing with it all alone; even adults with diabetes need help sometimes or with some tasks. But it does mean being ultimately responsible for making sure it gets taken care of.
Jake, who was diagnosed with diabetes at age seven, had never really taken charge of his diabetes because his parents had always done it for him. Now that he was 15, however, and spending more time away from his parents, it was time for him to take charge.
Here’s what I said to Jake: “You are now at the point where you have to own your diabetes. It is your diabetes, not your parents’. You have think about doing this for yourself because you want to stay healthy and have a long, healthy life, not because Mom or Dad wants it or because you want to please your doctor. You have to do it for you. We’re here to support you as you take charge and figure it out. It won’t happen overnight, but one step at a time.”
To get the process rolling, I ask Jake what level of effort he is currently putting into his diabetes care on a scale of 1 to 10 and how he might “kick it up a notch.”
To the first question, he says, “3 or 4.”
To the second, he says, “I dunno. I guess I can test more. I can remember my bolus insulin. Eat healthier.”
“That sounds good,” I say, “Let’s focus on one or two of them for now and talk about how you can start doing them every day.”
Jake sighs. “OK. If my Mom helps me with the carbs, I promise to put them in the pump. And I can set the alarm on my pump to remind me to test.” (All pumps have a feature that allows the user to enter the number of grams of carbohydrate to be eaten. The pump then suggests a bolus amount of insulin based on preprogrammed carbohydrate-to-insulin ratios and on the amount of insulin currently active in the user’s body.)
I then ask Jake if he can identify any personal benefits he might get from making more of an effort at diabetes care, such as improved athletic performance or feeling more confident about his diabetes when he’s away from his parents.
After giving it some thought, he says, “Well, here’s one. Whenever I go on a long bike trip with my friends, I just eat a lot so I don’t go low, and sometimes I cut my insulin, but I don’t test. Then I get dehydrated and thirsty and have to stop, then I’m high and take a whole bunch of insulin and end up getting low and holding everyone up. If I do a better job, maybe I can finish the bike rides without stopping or having everyone hover over me.”
“That’s a great goal. Anything else?”
Jake shakes his head no.
“Mom? Anything else?
“No, this has been good. This has been helpful. Jake, I want you to tell me and Dad what is helpful and what is not. Can you do that?” Jake nods yes again, although I’m not sure that he will do it without encouragement. Like most teens, he will probably take one step forward and two steps back as he works toward taking on these new responsibilities. With that in mind, I make one more suggestion, and that’s for Jake and his parents to have weekly meetings to go over his diabetes self-care.
It’s well known that kids of all ages do better with their diabetes self-care when their parents stay involved. For Jake’s family, I suggest the following, “What if Jake uploaded his pump information into the computer or smartphone every week and you looked at the data together? Jake can tell you what changes he thinks should be made, and you can tell him what you think, so that he can take on the responsibility of doing his own management. Knowing that you’ll be going over his numbers every week will make him more accountable, and a weekly meeting is also a chance for him to let you know how he’s doing and where he needs help. However, you, Mom, have to promise not to freak out if he isn’t doing a great job, because that might happen. What we are looking for is progress! Jake, is that OK?”
Jake says, “Yeah.”
There are many variations on this story, and your teen may need help in different areas from Jake. But the approach described here — initiating a dialog, listening to what your teen has to say, and offering positive reinforcement and encouragement — can often get things moving in the right direction.
However, if you find that you and your teen continue to struggle in spite of your efforts, it might be helpful to talk to a counselor or to ask your teen’s diabetes care provider for a referral to a mental health care professional. Sometimes a few sessions are all that it takes to get over a tough spot and start moving forward again. A counselor would also be able to evaluate your teen for depression if that is a concern.
The good news is that often, as teens turn 18 or 19 and move into the adult world, their attitude shifts, and they come back and say, “Could you go over that one more time? I’m now ready to hear it!”
So to all parents who are in the middle of it, have faith and hope that with perseverance, patience, love, and encouragement, your teen will do well.
For a listing of books and online resources to help your teens take charge of his diabetes and to reach out to other parents facing the same challenges, see “Resources for Parents and Teens.”
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